Tag Archives: Hospitals

Hospital Emergency Room – “Love em’ & Leave em”” – The Patient Consumer

2013-03-26 19.12.03

What Exit in New Jersey are you from?

This is a picture of MY “ROOM” IN THE EMERGENCY ROOM (”ER”), taken by me on Tuesday, March 26, 2013, at a New Jersey Hospital’s Emergency Room (“ER”).  That hospital’s security personnel demanded I delete this picture from my phone under the guise that the hospital has a policy of no pictures being taken in the hospital.  While I am certainly sympathetic to such policies, the reasoning behind such polices is to protect the privacy of anyone getting treated inside the hospital.  In that regard, I would NEVER take a picture of a patient or of any person; but as a Consumer I felt it appropriate to capture the essence of how I was mistreated in this emergency room and this image of my “room” seemed to safely capture that mistreatment.  I was not deleting the picture.  I also was sensitive to the security guard’s concerns about me somehow “identifying” the hospital and thus possibly picturing it in a false light.  To that end I agreed with him and that’s why this picture is simply of an EXIT SIGN and I defy anyone reading this to possibly associate this EXIT SIGN picture with the hospital ER in which I took it in – i.e., based strictly on the picture.  This was reason number 2 I was not deleting the picture.

I had several other similar “generic” and unidentifiable hospital/ER pictures on my phone which also captured how I felt I was mistreated but because the security guard was so kind, logical and reasonable, I deleted all of them except the ones above and below because I was not, and am not, looking to castigate this particular hospital or its personnel since I envisioned this particular emergency room nightmare experience as merely symptomatic of a system overtaxed by many Uninsured Patients who look to their local emergency room as a source of Primary Care.  That said, emergency rooms in the United States are designed to render triage medicine but the ER “triage medicine model” is on steroids out of bare necessity to keep up with the demands of serving its respective local community.  If the New York Yankees slugger Alex Rodriguez is any example of what happens to steroid users over the long run, it is no wonder why our ERs are consistently providing unsatisfactory “consumer” results.  Still, in Forty (40) years of going to hospitals and emergency rooms, this was BY FAR my worst experience in over 200 hospitalizations and ER trips.

 Cropped IV Pic March 31 2013

This second picture depicts my status when, after 6 hours or so, I was escorted out of the ER, and was forced to remove my own Intravenous Line (“IV”) causing my blood to squirt so high it almost hit the ceiling,  Ergo, this picture, which was actually taken 2 days later to show the bruising of my obviously poor medical technique.  Combining the two (2) pictures to create a collage of sorts; there was no door, no curtains, no privacy; no HIPAA compliance since I was barely being treated; just a gurney, under an Exit Sign, in a hallway in the ER, where I was essentially IGNORED for 5-7 hours.  My medical problems and responding treatment had dehumanized me to the point where some might say I was now just a lyric in a great Bruce Springsteen song like “Jungleland” where its characters agreed, “they’ll meet ‘neath that giant Exxon [i.e., Exit ] sign, that brings this fair city light.”  If that doesn’t typify the stereotype about New Jersey, …  Still, my experience at this particular ER, at this specific hospital in New Jersey, on this particular night and for my rather complex condition, is not at all representative of other fine medical institutions in New Jersey or even of this particular hospital’s ER since it’s not fair to judge the quality of an ER based on one person’s experience on one given night due to the variety of subjective parameters.  Now that the Disclaimer is out of the way, …

The Patient Consumer in a Hospital Emergency Room

Now that I’ve set the stage for this ER debacle and in my previous Part 1 of 2 Blog Post detailed how serious my last bout with the Lung Condition BOOP was to provide some context for said debacle, please note this Part 2 of 2  details the “consumer” side of things which prompted me to call my credit card company to cancel the $100.00 ER fee I had to pay pursuant to my Health Insurance Plan.  More specifically, just as I might revoke a credit card charge to a shady automotive repair shop which I thought had ripped me off, I did the same with this $100.00 Emergency Room charge as I believed the services rendered to me were almost non-existent and I thought it was unreasonable to pay for being either mistreated or treated like an animal.  I don’t blame any one person in that ER but my experience made me re-think how I must use a hospital ER moving forward.  I hope you come to the same conclusion after reading my story.

“Alice’s Restaurant Massacre” by singer-songwriter, Arlo Guthrie

Yes, this has been a rather long Post but I beg you to hang in there with me because you need to understand the complexities of the past when you try to find an answer to a difficult medical problem once resolved but nevertheless presented again.  I chose the “Alice’s Restaurant” subtitle above because writing this Post reminds me of listening to that song every Thanksgiving.  It goes on and on yet I always find the storytelling compelling.  I hope I’ve carried on that tradition.

Passed out on a Treadmill

So, approximately 6 weeks ago, I passed out on a Treadmill while walking VERY slowly and figured I was getting sick.  Each day I woke up I seemed to have absolutely NO ENERGY and it felt like each leg weighed 1,000 pounds.  That’s happened frequently throughout my life because of my Crohn’s Disease but this episode seemed particularly disabling.  Soon thereafter I developed a cough, saw my Internist, took cough medicine and basically was being treated for Bronchitis/Pneumonia.  I didn’t even relate it to a possible recurrence of the Bronchiolitis Obliterans with Organizing Pneumonia (“BOOP”) because I did not have Shortness of Breath, YET.  Once I developed a difficulty breathing and talking at the same time, it was as if my body was following the same exact pattern when I had BOOP in 2011 (see Part 1 of this Blog Post).  This time, however, the lovely NYC pulmonologist no longer practiced in NYC and due to being disabled and financially broke; I needed to find a NJ pulmonologist in my Health Insurance Plan who was qualified to take on my very complicated case.  Thankfully, a close friend recommended a female NJ pulmonologist who happened to be in my health insurance plan so I made an appointment.

The New NJ Pulmonologist

While pursing the pulmonary aspects of my present situation, I kept my NYC Crohn’s doctor in the loop and promised to see him after I secured the most appropriate NJ pulmonologist and had obtained all the test results needed to devise a collaborative treatment plan.  I didn’t want to believe I had BOOP again but my breathing quickly began to feel like I was sucking air out of a toothpick-sized straw and I had difficulty breathing and talking at the same time.  I went to the 1st appointment with the NJ pulmonologist with an open mind and a positive attitude and I’m glad I did because she was GREAT.  She knew all about BOOP and its potential relationship to Crohn’s Disease and other autoimmune diseases in addition to its possible connection to these “Anti-TNF Agent” drugs such as Remicade, Humira and Cimzia.   More importantly, she LISTENED for quite a while as I felt the need to impress upon her how complex my 2011 BOOP case was but how towards the end of that journey there was a Pathology Report from Mt. Sinai Hospital which cast some doubt as to whether I actually had BOOP even though the Prednisone clearly failed and the chemotherapy drug, Cytoxan, clearly worked.  She took notes and then handed me a list of the Medical Records and copies of the 2011 Diagnostic Tests and Reports she needed for comparison purposes for all new 2013 tests.  THAT is how to practice medicine.

Because I felt I was getting worse VERY QUICKLY and my physical symptoms echoed that sentiment, the NJ pulmonologist quickly ordered all the correct diagnostic tests and insisted that I at least try the 60 mgs of Prednisone until she got more data in and observed my response to the Prednisone.  I trusted her so that’s what I did.  That afternoon I somehow garnered up the strength to get her all the pertinent test results and records she had requested and a day or two later I had the definitive 2013 CT scan.  It is VERY IMPORTANT for Patients to keep such good and accessible records because when you have a complex medical condition the quality and speed of your care will ultimately depend upon how quickly and comprehensively you are able to provide these records to your current doctor.  This includes copies of Film studies, Reports, Operative Notes, Pathology Reports, Blood Work and Physician Notes.  My new doctor, like any thorough physician, wanted to be able to compare my 2013 CT Scan with the worst Scan I had in 2011 to provide her with the proper context and I was able to accommodate her in an efficient manner.  Chronic patients don’t like being sick but that’s inherent in the “job description,” but I have found that one of the most effective ways to ensure longer periods of good health (i.e., the best we can hope for) is being an Assertive and Engaged Patient.  In this context, that meant facilitating my doctor’s polite requests for DATA.   The doctor called me with the results of the CT scan and it clearly showed I had BOOP again but compared to the CT scan I had in 2011 just before the lung biopsy surgery, it did not look nearly as bad.  However, my symptoms were at least as bad or possibly headed to worse.  Unfortunately, BOOP is microscopic so there was no telling if I was at the very beginning of this BOOP episode or if it was as bad as it was going to be.  Regardless, it was time to batten down the hatches.

BOOP Take 2 – Treatment Plan 2013

The plan was to take the 60 mgs of Prednisone for 2 weeks until I saw my doctor for a Follow-up visit.  In the interim, I made appointments to see my NYC Crohn’s doctor and on the same day I had a long-ago scheduled follow-up with my NYC Pain Management doctor.  I have been on and off of narcotic pain medications so many times over the past 30 years that I most recently decided to try and go on a “Painkiller Vacation” despite always being in significant pain because I wanted to see how it would affect my life.  It took a while to wean down but “we” did it (i.e., my doctor and I) and I was narcotic-free for a few months.  The problem was that I was much more disabled as a result because the pain I got from the multitude of medical issues I have can be unpredictable and so intense that sleeping is the only way to get through them, i.e., without medication.

The Pain Management Plan

Up until a few months ago, I had always decided that I would take whatever drug I needed so long as it was prescribed by a duly licensed and responsible physician in order to minimize the disabling effects Crohn’s Disease would have on my life.  My attitude recently changed on that ever since I started being recognized as a leading Patient Advocate and asked to speak at different Healthcare Conferences around the world.  I also just launched a Peer-to-Peer “Patient Visitor Ambassador” program so that Veteran or “Warrior” Crohn’s, Colitis and Inflammatory Bowel Disease (“IBD) patients could be matched up geographically with “Patients-in-Need” so they could provide them with some “TLC” which is much needed with these tricky and often pervasive autoimmune diseases like Crohn’s.  It is called the “Crohn’s Disease Warrior Patrol.” I also got sick and tired of fighting with my health insurance company about how many pain pills I can get in a month and how many “Prior Authorizations” I needed to move forward with my life.  The insurance paperwork involved with trying to live and be productive with chronic pain became a full-time job and all that did was reinforce my underlying pain and physical limitations.  I simply wanted to try something different all the while knowing that it may not be possible for me to painkiller free.  But I’d only know if I tried.

That said, this episode of BOOP was getting worse and the very thorough NJ pulmonologist told me to carefully monitor my situation and if it got worse before our next appointment on April 2nd, I should go to the Emergency Room (“ER”) at her hospital.  Unfortunately, the Prednisone again didn’t appear to be working as planned and not only did my breathing get worse but last weekend I started to get that dagger-like pain in my lungs.  The front of my chest felt like a Piano was resting on it while my back felt like it was being stabbed whenever I tried to “pull” on a deep breath or sometimes for no reason at all.  Still, I was determined to stay out of the ER and make it to our follow-up appointment on Tuesday, April 2nd to reassess my options.  I just had to get through these doctor appointments in NYC on Tuesday, March 26th but the pain was getting worse and worse and I began to question how safe it was for me to even get in the car and drive.  However, it is VERY difficult to obtain timely appointments with these two (2) leading NYC doctors so I couldn’t reschedule them given the potential severity of my BOOP situation.

Tuesday – NYC then the New Jersey “ER”

The day started with me being the 1st appointment with my NYC Crohn’s doctor and he explained that the NJ pulmonologist had already made contact with her (which impressed me very much) but given how much pain I was obviously in, his initial take was that I belonged in the ER of the hospital in which she has privileges, which is in New Jersey.  Then he examined me and I saw that grave look of concern in his face which I have only seen a handful of times in the 30 years I’ve known him and it scared me.  He suspected I had Pleurisy, which would explain the severe “back” pain but he’s not a pulmonologist and instructed me to GET TO THE NJ ER.  Before I left his office, we discussed the efficacies of the Prednisone and how this BOOP episode seemed to be following the same exact track of the 2011 BOOP episode.  He concurred but also added that being on Prednisone for only 2 weeks in such a high dosage is not the end of the world especially if by doing so we were trying to avoid chemotherapy.  I told him I had to see the NYC Pain Management doctor before I headed back to New Jersey because I was in too much pain and wanted to make sure I had medication if I was not admitted to the hospital or for when I was discharged, if I needed it.  He understood and concurred since he had recommended this Pain Management Doctor to me many years ago.

The Nuances of Pain Management

I then went to see the NYC Pain Doctor and he also was intimately familiar with how I was “presenting” because he treated me for Pain during the 2011 BOOP episode, both IN and OUT of the hospital.  I told him that as per my NYC Crohn’s doctor, who has been in close contact with my new NJ pulmonologist, I was going back to New Jersey after we were done to go to my doctor’s emergency room. He also thought I may Pleurisy based upon the location, severity and “background” of the situation.  He then gave me a prescription for Oxycodone, which I have taken many times before.  I filled the prescription but didn’t take any pills because I didn’t want to “mask” whatever problem I had and I knew how complicated this could get so I thought it best to try and manage the pain until I got to the ER.  For those of you wondering why I just don’t see a New Jersey Pain Management Doctor, you don’t understand how hard it is to find such a compassionate doctor who nevertheless helps you straddle the fence between Dependency and Addiction and is stern with you when you steep too far one way or the other. I’ve tried to find a more convenient NJ Pain Management Doctor but they are getting harder to find all over especially after TV shows like Dr. Sanjay Gupta’s well-intended “Deadly Dose” which highlighted how people abuse Narcotic Painkillers.  (I produced a respectful Video Retort to Dr. Gupta’s show as a “voice” for those in chronic pain who don’t  abuse Painkillers and I’ve been contacted by MANY people associated with that TV show thanking me for showing “that side” of the situation.)

You also aspire to find a Pain Management Doctor who will help you maintain the best possible lifestyle given your physical limitations.  But there are also too many Pain Management Doctors who easily prescribe pills and patches without worrying about the consequences once the patient needs to “get off” these medications, for one reason or another.  There is also Health Insurance issues to consider as while it is counter-intuitive, many Health Insurers put limits on the number of Pain PILLS as opposed to paying attention to the Strength of the Dose prescribed.  Accordingly, in order to not have to be more dependent than necessary on the Pain Management Doctor, you need one who can help you navigate the almost barbaric and arbitrary rules set by each Health Insurer so that you can live your life without worrying about having taken one or 2 extra pills in a day and how that will affect your remaining monthly supply of pills.  In summary, it is a wonderful alternative for those battling chronic pain but everything comes at a price.

Entering the New Jersey Hospital Emergency Room

I had never been to this hospital before and was very impressed with how clean and organized the ER admission process was.  As a chronic patient, I felt like a Tourist “on the road to find out.”   But I was also intermittently writhing in pain as my back felt like it was on fire.  I had called my NJ pulmonologist’s office ahead of time hoping she could meet me there or at least leave a detailed message for the doctor in charge of the ER because it has been my experience that any personalized patient information communicated to the ER greatly facilitates the speed and quality of your patient care in the ER.  In that regard, she was made aware of my situation and I trusted that all would naturally work out.

However, once they “admitted” me into the ER, the only place or room they had for me was a gurney underneath the Exit Sign pictured above.  Recalling it aloud makes it sound like a line from Bruce Springsteen’s “Jungleland” but often times truth is in fact stranger than fiction.  At first, I didn’t really care about being “stationed” in such an open area because I was just happy I was going to be seen by a doctor.  But that logical approach changed after a nurse who claimed to be assigned to me examined my back with her hands and concluded with her secret diagnostic powers that it is only a muscular problem and that I should be fine.  I thanked her for her help but also tried to explain my history with BOOP, the most current findings of BOOP from a doctor on staff at this, HER, hospital and why I was in the ER but she had already made up her mind about me and my apparent “muscular problem.”  She did not listen to one word I said.  She had apparently made her diagnosis and in the interests of TIME and checking off each and every one of her responsibilities,  she was intendant to communicate that to the doctor in charge, as they grew very busy, so that me and my case could be quickly taken care of.  Who needs a CT scanner when Wonder Nurse works at the hospital?

Being labeled a “Drug Seeker” in an ER

I love nurses because they provide the last bastion of “continuity of care” in our chaotic healthcare system and they are usually incredibly compassionate no matter what mood a patient is in or how much frustration he or she demonstrates as they try to come to grips with their medical situation. But this nurse didn’t even listen to me explain that I was only in the ER upon the STRICT DIRECTIONS of the most experienced doctor I have ever known AND I have had this condition before and it feels like I have it again.  In retrospect, she apparently processed me as a “Drug Seeker” because from her perspective all I had was back pain and I was seeking to be seen by the doctor to help alleviate it, in the ER.   That’s not at all true because I was in the ER so that my entire BOOP situation could be re-assessed even if that meant admitting me because the high doses of Prednisone were not alleviating my breathing problems, and, now on top of that, I was experiencing severe pain in my lungs.  However, in due deference to Wonder Nurse, she too had to triage patients and I guess she had this full-proof system of applying her hands to a patient’s body to diagnose medical problems.  I have a friend who has a Blackjack Card-Counting System which works in a similar fashion.

What did I seek to Achieve by Going to the ER?

In all fairness to Wonder Nurse and to the ER doctor whom you will soon meet, it wasn’t really fair for me to “present” in the ER with such a complicated history and diagnosis and expect a successful outcome.  But where was I to go when my NYC Crohn’s doctor and my NJ pulmonologist instructed me to go to the ER if my symptoms changed, and they had?  This is a rhetorical question because I was now in pain but if the pain was just par for the course with the BOOP, I had already been given pain medication so all I had to do was stay the course at home and my NJ pulmonologist would soon devise the appropriate  treatment plan.  That’s easier said than done, and I’m just thinking out loud here, because the combination of struggling to breathe, severe back/lung pain and a history of serious systemic medical problems from such a high dose of Prednisone was like the devil on my shoulder telling me to go to the ER.  That devil got nudged a bit when my longtime NYC Crohn’s doctor INSISTED I go to the ER.  There’s something about being unable to breathe normally which empowers a patient to want to be seen by a magical doctor who could waive his or her wand and make it all better.  But, as also pointed out to me by my NJ pulmonologist when I was forced to call her FROM THE ER, what did I expect, the ER doctor to start infusing Cytoxan into me?  She was right, as I wouldn’t have let Wonder Nurse or the ER doctor pop a pimple for me let alone administer chemotherapy.  And I write that with all due deference to the magical diagnostic skills of Ms. Wonder Nurse.

Waiting for the ER Doctor was like waiting on a line for a Concert Ticket Bracelet

Despite my utter frustration, I tried to maintain a positive attitude in the ER and I know, probably better than most, how hectic an ER can be and that there are ALWAYS patients sicker than me.  However, with the knowledge that I was already under the active care of a Hospital pulmonologist and had already been diagnosed with BOOP, and if the ER doctor had read my file he would have seen that I also had it in 2011 and went through hell as a result, you’d think I’d be seen within an hour or two but it took almost 3 hours for the ER doctor to grace me with his presence.  During that much anticipated wait, I was left to lie on that gurney writhing in pain BEGGING for someone to help me.  I felt like a DOG who had been run over by a car who now posed such an ugly picture and stench that people just passed him by.  Whenever Wonder Nurse would walk by to get access to see another patient (after all, I was in the middle of the hallway so it was impossible to avoid me) and hear me politely ask for help, she would patronize me with false claims that “the doctor knows all about you and will be here soon.”

“Soon” came a few hours later when a very polite and kind doctor INTERVIEWED ME.  He never touched me or examined me.  I suppose he had grown accustomed to relying upon the magical diagnostic prowess of his Wonder Nurse.  I asked him to PLEASE call my doctor and I also succinctly explained the BOOP situation – both past and present. He said he would come back and give me some medication to make me “comfortable” and then he would examine me.  He then asked me about which medications work for me and I explained how I’ve seen a Pain Management Doctor on and off for 30 years so I know exactly what works and what doesn’t work.  But in-between sharing this information with him, I could barely breathe and I was also interrupted by severe pain.  He then darted off and I assumed he was going to call my doctor and start the process of addressing my pain and then taking an x-ray, blood work, EKG, etc.  It seemed I couldn’t exist outside a hospital with all of these symptoms and needed some relief or answers.

I was getting scared by the progression of the BOOP, or whatever else was wrong with me, yet for some odd reason after being “interviewed” by the ER doctor and “diagnosed” by Wonder Nurse, I didn’t feel as if I were in the right place.  I couldn’t put my finger on why or when I felt I didn’t belong in THAT ER but I think it began when no-one seemed interested in my medical background and current diagnosis of BOOP.  Another hour went by when Wonder Nurse came back to start an IV line (which she did very well) and then she gave me a dose of the drug Toradol.  Toradol has never worked for me and with the intensity of the pain I was in, it was as if they again weren’t listening to me or reading my file.  Immediately after the blood work and administration of medication, a Male Technician then performed an EKG test on me while I was on the gurney.

The EKG Test which won’t Wash Off

The Male Technician had to stick several sticky “connector” pads onto my body mostly around my heart so that he could obtain a reliable EKG reading.  He then applied some type of “paste” or glue which I imagine acts as the conductor.  He was polite and did not hurt me at all but when he was done he had left AT LEAST SIX (6) sticky “connector” pads glued to my torso and back AND the paste/glue was never wiped off my chest so it solidified and became entangled with my chest hair.  I now had Glue Soup on my Chest and was perplexed at how sloppy his work was.  Was his interpretation of the result just as sloppy?  I wondered.  I know it is a relatively small detail but after showering 7 times since Tuesday, I had to shave off ALL MY CHEST HAIR just to get to the bottom of the Glue Soup entanglement and I am still not done because as the hair grows back the glue starts to pull again and it now hurts such that I must shave it in the morning.  Again, not a big deal but how does a Technician leave so much glue on a patient without thinking about wiping it off and completing his job?  How does a Technician affix EKG connector pads to a patient’s body and then simply leave them there after he gets his test results?  Patients are also Consumers and based on any objective scale of quality of service, that’s akin to a restaurant customer ordering soda or coffee for dessert and having it spilled on them while the Server smiles, turns around and heads to pick up his or her tip at the next table.  This little EKG sloppiness was indicative of my entire horrific evening at this hospital’s emergency room.

Trying to get “Treated” in the Emergency Room – What does that mean?

Whenever I caught a glimpse of Wonder Nurse, I tried to explain to her that I am NOT comfortable and she, again, in the most patronizing manner said she will communicate that to the doctor and he will take care of it.  Another 90 minutes went by and NOTHING HAPPENED – no Nurse, no Doctor – NOTHING.  I think they took me for an x-ray during this period of time and then dumped me back on the gurney beneath the “Jungleland” Exit sign.  Trying to divert my attention, I made believe I was writing the song “Jungleland” and the lyrics were coming to me out of thin air

“Outside the streets on fire in a real death waltz
Between flesh and what’s fantasy and the poets down here
Don’t write nothing at all, they just stand back and let it all be
And in the quick of the night they reach for their moment
And try to make an honest stand but they wind up wounded, not even dead
Tonight in Jungleland”

Lyrics/Music © Bruce Springsteen

After I hummed the phase, “tonight in jungleland,” that’s when I CALLED MY NJ Pulmonologist and explained to her that “this medication was not helping me and I’m being ignored.  Moreover, I feel as if they all think I’m here seeking drugs when I am here because you told me to come here if the symptoms get worse.  Yet, I have, and they are doing nothing about it.”

It was a frustrating conversation because I was in pain and annoyed yet I have great respect for this doctor.  She then said there’s only so much she can do because she is not there and there was no way the ER doctor was going to start giving me Cytoxan so what did I want done?  I thought about her answer and realized that even the best of ER doctors is not trained to “treat” me or my complex condition in the ER.  They are trained to deal with life-threatening or painful situations so they could patch up patients for the purposes of getting them healthy enough to leave and see their specialty doctors.  But I still couldn’t breathe very well and was in severe pain so I didn’t know where else to go.  I didn’t even know what to ask my doctor to do for me because I had come to the ER almost on automatic pilot based on the recommendation of my NYC Crohn’s doctor and also on the overriding opinion of the NJ pulmonologist yet she now was both confused and powerless although I’m sure she felt bad for me.   I have a great deal of experience with these types of medical/ER situations but I can’t even imagine what someone without Health Insurance goes through when they decide to come to the ER.  In any event, I then decided to just ask her to do whatever she could to help me – whatever that meant – and then I conveyed my appreciation for any assistance she could offer.  It was at that moment I began thinking that going to the ER was a big mistake.  But, again, where else should I have done?  Rhetorical.  Maybe Wonder Nurse knows.

HIPAA Patient Privacy Rules in the ER

Another hour or so went by while I moaned and groaned and everybody watched me lie there like a dog who had just been hit by a car because there were no curtains or even attempts to afford me ANY privacy.  Under HIPAA Patient Privacy rules, ERs are afforded greater latitude in blurring the lines between Patient Privacy and providing Public Healthcare because it is very “situational” and they must do the best they can with what they are presented with and it’s better to save lives and treat more people than it is to possibly violate some technical HIPAA Privacy laws.  I “get” that but such latitude is only afforded to the ER when Patient Care is actually being given.  In my situation, I was being patronized and ignored.  I suspected the flat x-ray did not show much but that is not uncommon with BOOP and it is EXACTLY what happened to me in 2011 which is why they had to operate on me to see for themselves, just how bad it was.  I tried to communicate this to ANY nurse or doctor who would pass by but they just kept on walking as if I were a piece of toxic waste lying on a gurney waiting for the Disposal Service to pick me up.  That damn neon Exit sign was broadcasting my emotions like a 1970s Peter Lemongello Mood Ring.

The ER Doctor returns – and this time with Attitude

The ER Doctor came back after approximately 50 doctors and nurses passed me by during the previous 2 hours or so without uttering a word.   He obviously had seen my x-ray and consulted with Wonder Nurse about my muscular diagnosis because this time he brought an attitude with me.  It was as if he had introduced himself to me as Mary Tyler Moore but had come back as “Maude.”  I wonder if he knew had he hugged me that the EKG glue would have bound us together like Matt Damon and Greg Kinnear in the Farrelly Flick, “Stuck on You ?”  Come to think of it, I should have hugged him and thanked him for the Toradol just so he’d have to shave all his chest hair for 1 week straight!  Anyway, in my own ROOM, I could defuse this apparent situation-in-the-making but lying on gurney beneath an Exit sign while other medical professionals were laughing at me under their breathe, well, this was going to be a challenge.  It was almost as if he suspected something about me and something, or someone, confirmed that suspicion.

I initiated the conversation and conveyed to him that he had previously said he would make me “comfortable” but whatever he gave me did not work “and for the past 2-3 hours I have been lying here moaning and groaning in pain.”  While I did not ask specifically for narcotics, he said there was no way he was giving me narcotics for muscular back pain and that there is NOTHING WRONG WITH ME.  He carefully and loudly annunciated that there was “NOTHING WRONG WITH ME.”  His attempt to belittle me was as subtle as Maxwell Smart testing a listening device planted on the tip of his nose.  I ignored his unprofessional behavior to try and get to the matter at hand, which was TREATING ME, and asked him if he spoke to my pulmonologist on staff at the hospital and if he was familiar with my diagnosis and my 2011 similar diagnosis of BOOP which required chemotherapy.  He didn’t answer almost as if to purposely try to embarrass me in front on MANY PEOPLE, since I had absolutely no privacy and this included Health Care Providers, fellow patients and their families, and then he simply reiterated that all he could do was give me muscle relaxers. I again asked him if was familiar with my BOOP diagnosis and he said he spoke to my doctor and it is no big deal and there is nothing he will do for me.  I then tried to demonstrate how difficult it was for me to breathe but his interest in my breathing patterns were similar to my interest in his.

The STIGMA of Pain Management

I then explained to him how painful BOOP and Pleurisy can be and that in 2011 it was so bad that I had a Pain Management Doctor treat me.  The SECOND that phrase “Pain Management Doctor” rolled off my tongue he whipped out his cell phone as if he had been waiting to hear a prompting secret phrase about Richie Sambora from a cheesy FM Rock Station giving away “Bon Jovi” Concert Tickets so he could call into the radio station for concert tickets and he said something to the effect of: “Really, I want his name and I am going to call him right now.”  In front of MANY people, this ER doctor was trying to threaten me with some type of exposure for being what is referred to as a “Drug Seeker,” which is a patient who goes to ERs just in search of narcotic pain medications to get high.  It then hit me that being labeled a “Drug Seeker” was what had happened to me ever since Wonder Nurse “diagnosed” me with muscular pain because according to her she was able to “replicate the pain on touch.”  I told the ER doctor to please put the phone down because I can do him one better in that I saw that Pain Management Doctor earlier in the day and he actually gave me a prescription for Oxycodone.  Strangely, the doctor then said, and asked me, the following: “I want to see that prescription bottle right now and why haven’t you taken any if you are in so much pain?

Standing up for your Rights as a Patient, Consumer and Human Being

Again, I had an audience of many people and I could barely breathe but I was laughing at his ridiculous suggestion that I would take my own narcotics in an ER before I was diagnosed by a doctor in that ER.  I then tried to remember where I had put the prescription (I had come in with a Knapsack as I thought I might be admitted) and then I found it, showed it to him and also conveyed the above statement that I would never take narcotics prescribed for me to take AFTER I LEAVE the hospital – if I needed them – while I was in the ER under the care of another physician.  My ethical intent notwithstanding, after looking at the prescription bottle the ER doctor started walking away and I asked him to, “Please stop because by walking away I am assuming you are done treating me.  If that is the case, then I have wasted 5-7 hours of my time and I want this Intravenous Line REMOVED ASAP so I can leave.“  He kept going but not before I told him I want his name so I can file a complaint as both a Patient and a Consumer.  He said it would be on the Discharge Papers. Then a few nurses kindly nodded and indicated they would facilitate removal of the IV.  I waited approximately 20 minutes and nothing happened.  I then asked at least Five (5) different Health Care Professionals to help remove my IV and not one even looked at me.  I felt like a pariah who was somehow guilty of something, yet I still couldn’t breathe and was still in severe pain.  But that is no time for a pity party as a patient must stand up for him or her self even though it’s very hard to do when you are so physically compromised.

The Extreme Measure of Removing my Own IV

After a few minutes of taking in how bizarre this experience had been, I “announced” to the significant number of health care professionals walking in and around my Exit Sign, or Room area, that I was going to take out the IV line myself and would greatly appreciate if someone would simply provide me with some gauze pads and a Band-Aid.  I was tethered to my gurney because of the IV line so I was unable to access any such supplies.  No-one even looked at me.   I waited another 5 minutes to see if perhaps they would send over the Charge Nurse or even Security but NOTHING HAPPENED.  Then a very kind Male Nurse placed some gauze on my gurney along with a Band-Aid and told me he couldn’t physically touch me because I was doing something I am not permitted to do under hospital policy and he advised me I should wait for my nurse to remove the IV but he understood why I needed this material. I found his “participation”  interesting for two (2) reasons:  1. Wonder Nurse had somehow made it to my gurney to drop off my Discharge Papers but yet did not offer to take out my Intravenous line; and 2. Given that I was being ignored by everyone else, why didn’t this male nurse go one step further and stick up for me and try to have the IV properly taken out by him or by someone else?

Perhaps that is presumptuous of me because I did truly appreciate his act of pure kindness but I imagine the overriding rules of the ER prevented him from taking care of me since I was Wonder Nurse’s patient.   But I had a better chance of Bruce Springsteen coming into the ER specifically to remove my IV than I did of Wonder Nurse helping me in any way whatsoever.  It was like a lost episode of the Twilight Zone which in a strange way made me think Mr. Springsteen might literally appear.  It was as if whatever I needed or wanted I was not going to get in THAT ER.  I then carefully removed the IV but since I am NOT a medical professional, blood started spurting all over the place and it may have even hit the ceiling.  But, I knew how to stop the bleeding and did so and placed the Band-Aid on the bloody wound.   That same kind male nurse told me that I should use the restroom to freshen up as I had blood all over me.  I thanked him.  The wound is pictured above (albeit 2 days later to highlight the bruising)  and I can confidently say that had the IV been taken out the way it was supposed to be removed, I would not be at all black-and-blue.

Interlude – When your Frustration gets the best of you – APOLOGIZE

Incidentally, this was the same male nurse who correctly chastised me hours earlier for cursing on my cell phone when I was improperly venting my frustration to my Mom when she called me in the middle of this fiasco.  It was the 2nd night of Passover and I missed my family and my anxiety turned into intense frustration from the way I perceived I was being mistreated in the ER.  I was trying my best to be polite to everyone in the ER, even Wonder Nurse, but the increasing hopelessness of the situation and my fear of what I was to do if they couldn’t help me in the ER, got the better of me along with the aggressiveness which comes along with being on 60 MGs of Prednisone for 10 days.  Thus, all I could do was apologize to this male nurse and stop cursing.  I did that, I feel bad about it, but it happened while I was out in the hallway under that Exit Sign, on a gurney all alone, not being able to breathe very well and often in severe pain.  It’s not an excuse because there were families all around.  I am just trying to provide context for what was inappropriate behavior by me. I never cursed at ANYONE in particular and all of my profanity was “frustration-based” and not at all directed any person.  To the credit of the male nurse, he accepted my apology and hours later when I needed help with the IV, it was HE who help me.

You must delete the Pictures of your “Room” in the ER!

I then thanked the male nurse for the gauze and Band-Aids, used my phone to take some pictures of my “ER Room,” being extra careful to NOT photograph anything or anyone that could be identified as the Hospital, the ER or as any Person.  I respect people’s right to privacy and I wasn’t looking to embarrass the hospital, the ER of its staff.  I just wanted to get a picture of the “Room” I was kept in at the ER while they treated me like a Drug-Seeking Animal.  I then went to the bathroom to freshen up and when I got out of the bathroom and headed back to the gurney, there were two (2) Security Guards standing in and around my palatial ER “Room” demanding that I delete all pictures I took with my cell phone. I initially told them, “No,” but the main security person seemed to be very reasonable so I decided to explain my intent and offered for him to LOOK at the pictures on my phone and I said I would delete whatever he thought was contrary to hospital policy unless I disagreed with his interpretation of that policy.  Before I could engage with him, however, his colleague was too aggressive for my tastes when he tried to “grab” the phone from me so he could impose his will on me and my cell phone.  Having just pulled out my IV by myself, the sight of blood didn’t scare me so I pulled the phone back from him as I looked him directly in the eye and said, “I am trying to cooperate here so please don’t make this a scene.  I have offered to reasonably cooperate so either get your hands off my phone or I will keep all the pictures.”  His partner calmed him down and I got back my phone.

The calmer and Head Security Guard starting explaining to me the hospital has a policy of no pictures and as a trained attorney I asked him for proof of that policy. While he sent someone to get it, I did exactly what I said I’d do and politely showed HIM every picture, including the above Exit Sign which denoted my very special place in the hallway. He respectfully requested that I delete EVERY picture and I told him I would only delete pictures which identified the hospital and there were no pictures of people since I would never even do that.  But because he was so nice, I told him I would delete all of them EXCEPT the Exit Sign.  He wasn’t happy but at least we settled our dispute in a quick and amicable fashion.  The other security guard is still looking for the hospital’s policy on no pictures.  Then the Security Guard began escorting me out of the ER and we had a pleasant conversation the entire time, although I still had pain and problems breathing as I walked.

Illegible Discharge Instructions – I wanted ER Doctor’s NAME

On the way out of the ER, I told the Security Guard I wanted a legible printing of the ER doctor’s name and he brought me to the Charge Nurse.  This particular Charge Nurse had just gotten on shift and said the doctor’s name is on the Discharge Instructions.  I told him it was NOT, or if it was, it was “coded” so that hospital personnel knew who treated me but I would have NO IDEA.  Therefore, I wanted him to please print it legibly for me.  At first he just printed the last name and because it was a foreign name I was unsure whether I had the first or last name so I asked for the full name.  For some reason, this Charge Nurse took issue with that but I persisted and he gave it to me.  What is the big secret about getting the name of the ER doctor who treated me and charged me money for that treatment?   I just looked at the Discharge Instructions again and now that I know his full name I see that the first initial of his first name and then his last name is printed next to “Attending” in the upper-right-hand-corner of the Discharge Instructions.  How in the world would I have been able to decipher that code? Clearly, this methodology of  “transparency” is  not that at all and is simply a way for the hospital to keep track of which doctor treated me – just in case.  That policy MUST CHANGE and Patients must demand that it change.   When you get your hair cut, don’t you know the NAME of the hair stylist?  Then I asked him to identify the Charge Nurse who had been on duty during my ordeal and he gave that to me as well.  I wanted that person’s name because in my experience he or she should have come over to at least investigate what was going on with me, if not to help me, beneath that neon Exit Sign in the hallway.

What’s next after Emergency Room – who do you see when the ER doesn’t help?

When I left the hospital and got to my car, I started crying.  I didn’t know what to do next and I felt as if I had no one to turn to.  Besides my immediate symptoms, I was worried about what was going to happen going forward as that 2011 episode of BOOP is still so fresh in my mind.  Then I got angry and that was most likely due to the Prednisone because I am NOT an angry person.  I’ll admit to being in Pain and Scared but Angry I am not.  I am frustrated at times but always POSITIVE.  I knew I needed to talk to a friend and thankfully I have several of them and this particular person just listened to me describe what I had just experienced and how scared I was of what was going to happen to me next.  It felt good to “unload” all of this information, I also shared it with a fellow Patient Advocate who I have great admiration for and her compassionate response also made me feel better.  But I could not sleep and I started to think I was going to have to wait until my follow-up appointment next Tuesday to speak with my NJ Pulmonologist, and whatever might happen to me before then, was just going to happen.

Don’t WIN the ER Battle & LOSE the Treatment War

At approximately 11 AM on Wednesday (the very next day), I received a phone call from my NJ Pulmonologist’s office telling me I had a Wednesday, 3 PM appointment with her.  I was puzzled as I never made that appointment.  This office person told me it was in the Discharge Instructions.  I double-checked, it is not.  Regardless, I needed help so I went to see her.  She could not have been nicer or more compassionate and I chose to use my time with her to focus on getting me better.  My experience in her ER really had nothing to do with her and any time I spent belaboring that point was wasting time that could be used helping me get better.  This is important for other patients to understand because you might win the ER battle, but lose the Treatment war.  This is also why you must choose your battles carefully.  The ER is by necessity a tough place in a world of “love em’ and leave em’” medicine.  But when you are in your doctor’s office, focus on what’s really important; YOU.

The Battle was how badly I was mistreated in the ER; the War was getting me better from the BOOP.  My doctor really had nothing to do with the battle and given how complicated my case is, conceivably only Wonder Nurse could have helped me.  :)   I did, however, point out how I resented being labeled a “Drug Seeker” when the ER doctor CLEARLY knew NOTHING about me or my situation and he had completely misunderstood whatever she had told him.  To my surprise, my NJ Pulmonologist told me I was right and then we moved on.

Patient Input alongside Science & Medical Experience

She concluded after 10+ days of observing me that the Prednisone is NOT helping me and she began decreasing it AND she informed me she would be  “scoping” my lungs on Friday.  Not that she wasn’t “listening” to me before, but when we SPOKE on the phone in the ER I had commented that at some point my patient input has to start counting for more because I’ve lived this BOOP fiasco in 2011 and I don’t care to re-live it, if that were at all possible.  I think that made her shift a bit in making room for my patient input amongst her scientific mind and medical experience.  It’s a difficult journey for an experienced patient and smart doctor to go through together but science hasn’t yet evolved to the point where patient input is irrelevant and I was glad to see how adaptive my doctor is as she pivoted her approach a bit.

Post Friday’s Bronchoscopy

I had the Bronchoscopy on Friday under General Anesthesia.  In 2011 I could not have this endoscopic procedure because the doctors thought my lungs were too far gone to substantiate its risks.  The test went well and the doctor excised a number of biopsies but she is concerned.  She is concerned because BOOP is microscopic and while we are waiting on Pathology Reports she might have to also facilitate an operation on my lungs so she can take larger biopsies.  She’s just being thorough so that when and if she decides to administer some type of Treatment Drug, it is the safest one best suited to healing my lungs.  A patient can’t possibly expect to get such treatment in an emergency room BUT sometimes symptoms get so bad that staying at home seems dangerous.  I am accustomed to making such decisions with my Crohn’s Disease when the prospect of a perforated bowel is the touchstone for grabbing that medical “go bag” and heading to the hospital.  But with my lungs, I guess it’s a different standard. Again, the amount of Prednisone I am on could also get me VERY SICK so I’m simply trying to be true to myself and also follow the directions given to me by doctors.  I think my NJ Pulmonologist finally gets that and she finally gets me.  I can’t ask for more unless Wonder Nurse can see through my lungs.  :)

Leave A Comment BUTTON

MAW PPP Dec 21 2012

There is a Need for the “Crohn’s Disease Warrior Patrol”

Cropped CDWP Pic Dec 31 2012

For those faithful readers of my Blog and my other Health Care Social Media (“HCSM”) Platform journalistic contributions, I apologize for again writing about this “Crohn’s Disease Warrior Patrol” but something magical is happening relating to it and I need to share the experience.  It quickly went from an idea to a Blog entry to an aspiration and then to reality, when a very sick hospitalized 9-year old boy named Damon was understandably having difficulties coping with having to deal with two (2) Ostomy Bags while being treated for a variety of emergent digestive disorders.  More specifically, I had coincidentally recently written a Blog entry about the idea of this Crohn’s Disease and Inflammatory Bowel Disease (“IBD”) “Hospital Patient Visitor Ambassador Program” when I was contacted via Facebook about Damon and how it would be great if I could find someone with an Ostomy who could come with me to visit with him in the hospital to cheer him up and let him know that there is life after such an experience or diagnosis.  That’s when I met up with Marisa Lauren Troy and Jeffrey LeVine and we had that lovely visit with Damon last Sunday, December 30, 2012, at a Children’s Hospital in Westchester, NY.  Since then, Damon’s spirits are MUCH better and it seems his physical problems are also beginning to improve.

Overwhelming Encouragement & Participation by “Crohnies” and “IBDers”

Once we began to post pictures of our visit with Damon, I began to receive emails and HCSM communications from Crohn’s and IBD patients from ALL OVER THE WORLD encouraging me to move forward ASAP because they saw this as a wonderful response to a sorely needed service.  Everyone seemed to remember the horrors of their hospitalizations and the terror they would have avoided had they been visited by veteran “Crohnies” and “IBDer” folks like me, Marisa and Jeffrey.  I was overwhelmed by not only the sheer amount of messages and HCSM postings but also by the 100% POSITIVE and ENCOURAGING nature of each and every message.  I felt like I was witnessing the moment when someone’s Chocolate met someone else’s Peanut Butter and Reese’s Peanut Butter Cups were born!  It was a warm feeling knowing that I had conceived something that actually made a difference for hospitalized Crohn’s and IBD Patients, their doctors, hospitals and various related organizations such as Pharmaceutical Companies, and Crohn’s and Colitis Foundations, Chapters and Charities.  I was also constantly reminded of the “business side” of forming the “Crohn’s Disease Warrior Patrol” when incredibly altruistic people in HCSM contacted me with invaluable knowledge and experience encouraging me to seek funding via “Crowd Funding” methods on the Web such as Kickstarter.com, Indiegogo.com and MedStartr.com.

Moving forward with Crowd Funding, Sophisticated Website and forming a Non-Profit

With only so many hours in the day and me having to also battle my own Crohn’s Disease issues, it’s been quite the challenge to keep up with the seemingly 24-7 barrage of people from all over the WORLD who have already signed up to be veteran members of the Crohn’s Disease Warrior Patrol.  Accordingly, I had no choice but to make this my top priority so you may not hear from me as frequently while I fill out forms, design a Business Plan and produce a Video which conveys the genuine need for the Crohn’s Disease Warrior Patrol and the intense participation interest already articulated by Crohn’s and IBD veteran or “warrior” patients.  While more ideas come to me whenever I can “steal away” some time from my computer to reflect upon this exhilarating experience, set forth below are my main objectives:

  • Hire my Web Designer to customize the present, very basic, website so that veteran patients can be matched with interested hospitalized Crohn’s Disease and IBD patients by zip code, while at the same time collect important data about the hospitalized patient so that hospital visit matches are age and Crohn’s/IBD condition/issue appropriate;
  • Professionally promote the website and service so that veteran Crohn’s and IBD patients Sign-up to be “warriors” and interested hospitalized Crohn’s Disease and IBD patients are aware of the “Crohn’s Disease Warrior Patrol” service;
  • Professionally promote the website to the various Crohn’s, Colitis and IBD Chapters and Charities and to the National Healthcare Media to raise the public’s awareness of the potentially severe and disabling aspects of Crohn’s Disease and IBD;
  • Through the growing National Publicity of the “Crohn’s Disease Warrior Patrol” and due to certain connections I have from practicing Entertainment Law for several years, recruiting certain Celebrities to make surprise inspirational personalized phone calls to hospitalized Crohn’s and IBD patients, where/when appropriate, and if possible;
  • Create memorable promotional giveaways for hospital visits such as a You’ve just been visited by the Crohn’s Disease Warrior Patrol t-shirt to give to hospitalized patients;
  • Develop an aspect of the “Crohn’s Disease Warrior Patrol” which generates money (e.g., selling t-shirts, mugs, educational speaking events, etc.) for the purposes of paying operating expenses and to donate the rest to help finding a cure to Crohn’s Disease and IBD; and
  • Creating an HCSM platform area of the “Crohn’s Disease Warrior Patrol” which educates Crohn’s and IBD patients, old and new, about the latest diagnostic and treatment advancements.

My Hospital Visit this week which galvanized my Determination

This past week I made a hospital visit to a “friend of a friend” who, as I was to pleasantly learn, is like a kindred spirit.  We like the same music, went to the same Summer Camp as kids and now, both unfortunately know what it’s like to languish in a hospital for weeks at a time with Crohn’s Disease diagnosis difficulties and Treatment Plans no more sophisticated than compassionately treating pain and hoping a miracle happens and all the Crohn’s symptoms magically go away.  I sat with this patient for almost two (2) hours and we bonded over many things but when she asked me my opinion I couldn’t help but be candid when I told her she’s being seen by the wrong doctor if after two (2) LONG hospitalizations within the past 3 months her doctor has no specific diagnosis and no Treatment Plan.  She’s very resilient, smart and has a great husband advocate who totally understood my point so plans are in the works to soon get her to a New York City doctor for a 2nd opinion.

It’s nothing personal against her present Long Island doctor and it’s not my bias toward Mt. Sinai Hospital in New York City but it has been my experience that diagnosing and treating complex Crohn’s Disease cases like hers, and mine, come down to numbers: i.e., the greater the number of these types of complex Crohn’s Disease cases seen by a doctor, the greater the likelihood of a quick, accurate and effective diagnosis and treatment.  In the New York City gastroenterology practice I was referring her to, they see more Crohn’s Disease cases than any other medical practice in the world.  With that increased patient interaction comes exposure to the strangest and most complex of Crohn’s Disease cases and that provides the patient with the best chance of being diagnosed and treated most effectively and efficiently.   Once she committed to implementing this 2nd opinion plan, she became hopeful that she will soon get an answer.  I was proud for having contributed to that new outlook because there may be nothing worse than lying in a hospital bed with such severe pain and obvious Crohn’s Disease or IBD symptoms only to be doubted by some medical professionals who get frustrated when nothing tangible appears on diagnostic tests to explain the patient’s uncomfortable plight and they then turn to the patient as the possible cause because nothing else makes sense.  That is a logical approach but it has proven time and time again to be counter-intuitive to Crohn’s Disease and IBD cases so I find it to be unacceptable.  Accordingly, my parting words to her and her husband were to be persistent and consistent in seeking answers, a diagnosis and a Treatment Plan.

The Unintended but Barbaric Nature of some Crohn’s Disease Hospitalizations

Not only did last week’s Long Island hospital visit add further validation for the need of a Crohn’s Disease Warrior Patrol, but it also reminded me of many of my ill-fated hospitalizations and that made me think about the thousands of other similar tortuous Crohn’s Disease and IBD difficult hospitalizations.  Please understand that I do not blame anyone for this and I only appreciate the determined and dedicated efforts of all the medical professionals who try to help mitigate the inherent difficulties of a Crohn’s Disease or IBD hospitalization.  It is just that Crohn’s Disease and IBD will always be “Invisible Illnesses” as demonstrated by the well-intended, but almost barbaric, manner in which Crohn’s patients are diagnosed & treated. Most healthy people or even loved ones of Crohn’s and IBD patients don’t know this because they logically assume there’s a definitive “test” and if it’s “positive” – you’ve got Crohn’s or IBD.  NO, nothing can be further from the truth.  You often “present” at the hospital, or more likely the emergency room, with such painful symptoms that diagnostic tests can’t even be conducted on you until you’ve been on horrific (i.e., from a side-effects perspective) Intravenous anti-inflammatory medications (i.e., Prednisone-type drugs) for a few days. Then, because Crohn’s Disease is almost “personalized” in how it affects each patient, the doctors often must work in the “grey” when their scientific training tells them to look for “black and white.”

Sometimes you get lucky and a Picture (i.e., X-ray, MRI, CT scan, etc.) tells the story. But more often than not, you are all alone in that grey area fending off suspect looks from medical professionals, who should know better based on years of Crohn’s Disease and IBD cases being perplexing. In a worst case scenario, if some doctors can’t find what they need in order to substantiate their hospitalizing a Crohn’s or IBD patient, they start “blaming” the patient for either having these strange, intermittent and inconvenient symptoms, making them up or exaggerating them. That’s when Crohn’s and IBD patients must be persistent AND consistent in seeking a Diagnosis and a Treatment Plan. It’s even okay if a doctor admits he’s stumped and refers the patient to a different gastroenterologist who sees more complex cases and thus might be able to provide that diagnosis and treatment plan – even if it’s merely a “trial and error” one.  This is why I always tell Crohn’s and IBD patients that if they are not “collaborating” with their doctors then they are either not communicating properly or they need to be treated by different doctors.

“Network Television” Crohn’s Disease “Biologic” drug ads make IBD seem as innocuous a Disease as Erectile Dysfunction and that is a DISGRACE

What typical people also don’t know is that the drugs advertised on Network Television which portend to “treat” “Severe Crohn’s Disease” and IBD are actually not that successful and, more importantly, they “can” cause side effects which can be lethal (e.g., I almost died from one such “Biologic” medication which eventually caused me to have to go on Chemotherapy to treat a possibly fatal Lung Condition known as “B.O.O.P.”).  Even if they are not life-threatening, the side effects can be as severe as many of the Crohn’s Disease symptoms. So why would a Crohn’s Disease patient take such drugs? My answer was: “I have no other choice because my body can’t sustain more bowel surgery.” But that was several years ago and unfortunately too many more Crohn’s Disease patients have suffered from these side effects such that my blood boils when I see a TV ad for one of these drugs because they casually stigmatize Crohn’s Disease out to be no more than an Erectile Dysfunction problem, which a pill can substantially resolve.  That’s just not true with Crohn’s and IBD as the success rate of the these Biologic drugs varies from 30% to 60% and even those numbers are deceiving because their “success” (i.e., placing the Crohn’s Disease patient into remission) may only last for a few years and then the devastating side effects may set in.  That Crohn’s Disease patient could then have additional autoimmune diseases and, as a result, much more serious and expensive medical problems.

There has been no tangible proof of a direct scientific link of these Biologic Severe Crohn’s Disease treatment drugs to poor success rates and devastating side effects and, in my humble opinion, I think that keeps these Pharmaceutical Companies selling “hope” in the form of a drug.  But if you converse with enough Crohn’s Disease and IBD patients through HCSM, you will encounter horror stories that will bring tears to your eyes.  What started out as Crohn’s Disease turns into several more autoimmune diseases and some patients, like myself, are left with such severe and unpredictable joint pain and decreases in respiratory capabilities that there are days we cannot get out of bed.  Thus, the cost of these glorified Biologic drugs advertised on TV to treat Severe Crohn’s Disease often comes at a price which no-one can afford.

Please SIGN-UP for the Crohn’s Disease Warrior Patrol and help me at least Raise Awareness of the seriousness of Crohn’s Disease and IBD

If you have Crohn’s Disease or IBD, I know you “get” the importance of what I am writing about.  Besides helping Crohn’s and IBD patients through difficult hospitalizations, my goal is to raise the awareness of the seriousness of Crohn’s Disease and IBD so that in the worlds of Research and Fundraising they are given the same amount of respect and attention as such devastating diseases as Breast Cancer, Aids, Multiple sclerosis, Parkinson’s, Alzheimer’s Disease, Rheumatoid Arthritis, Amyotrophic Lateral Sclerosis (“ALS”), etc.  Maybe then, from information acquired via global patient-to-patient communications, a Cure for Crohn’s Disease and IBD will emerge. Until then, please be patient while I set-up the Crohn’s Disease Warrior Patrol and if you haven’t SIGNED-UP yet as a veteran or “warrior” Crohn’s Disease or IBD patient, please do so by visiting CrohnsDiseaseWarriorPatrol.org.  Please provide as much information as possible which will enable me to create a database to make the best matches of veteran patient to hospitalized patient.  Then, once I get a Crowd Funding website up and running, I will spread that word and Donations would be greatly appreciated so that I can start working on achieving the articulate objectives stated above.

Thank you for your interest, support and incredible encouragement.  The global possibilities of HCSM make it a technologically-powered grassroots Patient Movement and I intend to utilize it to help patients with Crohn’s Disease and IBD get the attention they deserve.

Leave A Comment BUTTON

 

 

MAW PPP Banner Dec 15 2012

 

 

Inaugural Hospital Visit of “Crohn’s Disease Warrior Patrol”

In this case, a Picture truly does say a thousand words so I will keep this brief.

A bunch of folks on Facebook with Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), were notified by Ivy Lindsay of “Comfort Ostomy Covers by Ivy” that a 9-year old boy named Damon had been hospitalized SINCE NOVEMBER 1, 2012 with a variety of life-threatening ailments which HIPAA prevents me from disclosing.  However, Damon BEAT THE ODDS and continues to get better although he will be battling for a while.  Part of his battle involves areas which we Crohn’s and IBD veterans or “Warriors” are familiar with.  Hence, the inaugural “Crohn’s Disease Warrior Patrol” hospital visit at Maria Ferari Children’s Hospital at Westchester Medical Center in Valhalla, New York.

Ivy Lindsay orchestrated things on Facebook and she and I spoke on the phone on Saturday, December 29, 2012.  After being told the specifics, Marisa Lauren Troy and Jeffrey LeVine immediately volunteered to come with me on Sunday, December 30, 2012, to visit with Damon and his two (2) Moms.  All we wanted to do was bring some knowledge and comfort to them and help alleviate the enormous stress of being a hospital patient or loving a hospital patient.  Thankfully, our visit seemed to work as we each shared our respective experiences with Damon and his Moms and, before we knew it, Damon was smiling a bit and even willing to stroll on over to the couch with his IV Pole and various other hospital “attachments” to take the above picture.  We also had the privilege of meeting and getting to know some extraordinary people in Damon and his Moms.

In reaction to the posting of the above picture on various Health Care Social Media Platforms, the outpouring of wonderful messages, gestures, thoughts, etc. regarding Damon has been INCREDIBLE.  Some have even responded with wanting to send “care packages” of video games and the like.  If you want to do that for Damon, please just contact me and I will pass it along in terms of where to mail it and whatnot.

If you are interested in helping the Non-Profit Organization we have built to make these hospital visits possible, please visit http://crohnsdiseasewarriorpatrol.org and click on “Donate” / “Sign Up Here” tab.  Or you can just click on the Screenshot Picture below.

Thanks and have a Happy and Healthy New Year. :)

 

 

 

Hospitals “Feel Like Prison”

 

This is a 4-minute Video snippet of a WEGO Health-sponsored  “Patient Panel” which focused on the “Hospital Patient Discharge Process.”  I was asked to participate in the Panel due to my vast and lovely experiences being “Discharged” from over 200 hospitalizations as a result of 30 years battling Crohn’s Disease.

I’ve worked with WEGO Heath before and each time I am more impressed with their corporate style.  It’s probably because they let me, be me, and never filter my opinions.  Let’s just say WEGO Health appears to be a very cool company because they practice what they preach: “Empowering Health Activists to Help Others.”  We need more companies like WEGO Health to provide these types of Patient platforms from which Health Activists can convey the “Patient Perspective.”

Modernizing the Hospital Patient Experience

Perchance to Dream: Improving the Hospital Patient Experience

Earlier this week I was invited by Wego Health (whose unique corporate mantra is “Empowering health activists to help others.”) to participate in a videotaped Virtual Patient Panel to help the company ExperiaHealth (“Experia”) (whose corporate motto is “Humanizing the Healthcare Experience”) in improving the “Hospital Patient Experience,” and in this case, specifically the Discharge Process. Unbeknownst to me, Experia has been doing this for quite some time in at least 15 significant hospitals across the country. Who knew that while I was being hospitalized all over the country being constantly awoken at 3 AM to take a sleeping pill or harassed by the hospital’s television collection service for $6.00 when I was practically in the surgical recovery room, that such an incredibly necessary company was implementing many of the things I had been complaining about after 200+ hospitalizations.  I guess if you live long enough, life will pleasantly surprise you.  That’s why, incidentally, I always tell chronically ill people with incurable illnesses such as Crohn’s Disease that, “the longer you live, the longer you live.” What I mean is that the longer you live, the better your chances are for new and more effective treatments, or even a cure, being discovered.  Hence, this Blog Entry is indirectly about how a dream of mine, i.e., attention being paid to improving the “hospital patient experience,” is now being actualized and I am also involved in helping to carry out this new reality of mine and of thousands of hospital patients around the world.

The Business Side of Healthcare

When I got to meet the Experia Patient Panel Moderator, Elizabeth Boehm (“Liz”), whose title is Director, Patient Experience Collaborative; I was shocked that such thoughtful and compassionate people worked on the business side of healthcare.  Up until now, I had assumed all healthcare executives were solely focused on providing the best patient care at the lowest price paying no mind to the often physically and mentally painful & unnecessarily demeaning experiences patients must undergo to achieve these corporate objectives.  More specifically, I always envisioned the healthcare “business” functioning like the inner-workings of an automobile manufacturing company which always developed the coolest looking, fastest driving and most fuel efficient cars without giving any consideration to the driver “experience” or if a typical-sized driver could even fit into these sleek fast-moving machines without their ever-expanding waistlines rubbing up against the steering wheel and preventing a tight left turn.

Perhaps the car drove too “hard,” the seats were too stiff and the drivers developed hemorrhoids within the first 5,000 miles or the driver’s seat had to be so low and devoid of lumbar support that spine fusion surgery was inevitable within the time frame of the usual bumper-to-bumper warranty.  Despite these rather significant driver inconveniences, the automobile company’s marketing programs for these slick new macho machines created great demand and the general public assumed that drivers just lied or never mentioned the aforementioned downsides because no schmuck complains about being seen driving around in the best vehicle money can buy.  That’s like dating Jennifer Lopez and complaining to the Press about her ridiculously over-sized derriere.

A stretch, maybe; but I’ve always envisioned the business-side of Hospitals operating exactly like this where patients and their friends or families of patients assumed that quality patient care came along with occasional horrific, unsanitary and demeaning personal experiences.  However, I was never convinced that my friends and family understood the frequent lack of humanity and common decency encountered by hospital patients.  It just went unspoken in my world until I wrote a Book about my experiences (see below).  As a case in point about the public’s acceptance of quality healthcare at whatever temporary painful cost to the patient:  Did television viewers ever watch the critically acclaimed show “ER” and even once witness: consistently disgusting hospital food; patient roommates who destroyed shared patient bathrooms almost as if they had a license to live like they were in a monkey cage for a few days; condescending doctors to whom patients had to follow out of their rooms like Peter Falk’s “Lieutenant Columbo” sans rain coat just to finish asking a significant question or two; or nurses with borderline evil bedside manners whose lack of compassion was only surpassed by their robotic personalities?

The Value of being a Professional Hospital Patient

But after listening to Experia’s Liz Boehm explain the Patient Panel’s objectives, style and procedures, I felt like I had been summoned into the principal’s office and instead of being chastised for my bad behavior teasing a girl I was actually smitten with, I was heralded for possessing certain unique knowledge that he found helpful in improving the effectiveness of teachers and education.  I have to admit that during those first few moments of this Patient Panel, the experience felt pretty cool because my Crohn’s Disease had now apparently qualified me for something other than Miralax.  I was so surprised at my almost “reversal of fortune” role in this Patient Panel that it felt as I had been sleeping for 5 years and when I awoke Tom Brady of the New England Patriots was President and Anne Hathaway was making me breakfast wearing nothing but a Tom Brady jersey.

Truth be told, I wrote a Book about this in 2001 called, “Confessions of a Professional Hospital Patient,” because there was so much wrong with the “hospital patient experience” I felt there was a story to be told which could shed some light on significant but subtle problems almost every person in the world would someday experience since everyone gets sick and most people don’t get through life without an adult hospital stay or two.  Thankfully, my Book was critically acclaimed and it continues to sell as “the most accurate and honest depiction of the ‘hospital patient experience’” but to make sure Ms. Boehm’s aim was as true as Elvis Costello’s, I had a few questions for her about Experia and their hospital patient experience venture.

Who is ExperiaHealth?

In short, Experia’s website (see http://www.experiahealth.com/about.htm) lists its description and corporate objectives, which thus far I can attest to being 100% accurate, to be as follows:

ExperiaHealth is a leading experience improvement company that delivers breakthrough services and technologies to improve the patient and employee experience at hospitals and clinics nation-wide. ExperiaHealth’s aim is to accelerate adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Ms. Boehm’s qualifications are also listed on the Experia website and she too is uniquely qualified and dedicated to the cause my life has been dedicated and directed to once I was diagnosed with Crohn’s Disease approximately 25 years ago.   At the risk of embarrassing Ms. Boehm for her impressive and thoroughly focused career of helping to improve various difficult life experiences, below is  the website’s description of her background:

Elizabeth Boehm, Director, Patient Experience Collaborative

Liz Boehm is the Director of ExperiaHealth’s Patient Experience Collaborative where she brings a wealth of expertise on defining and implementing new innovations in healthcare experience, and helping hospitals and care providers create lasting value for patients and caregivers. Through the Collaborative, she helps ExperiaHealth’s clients create a competitive advantage via the sharing and adoption of practices and technologies that improve outcomes, create value for patients, and restore the human connection in healthcare.

Liz joins ExperiaHealth from Forrester Research where she was a principal analyst serving customer experience professionals in the healthcare and life sciences industries. During Liz’s 15 years at Forrester, she worked with the country’s top hospitals, health insurers and life science firms to craft customer experience strategies and drive business value through improved customer engagement. She joined Forrester in 1997 and co-founded Forrester’s healthcare and life sciences research practice in 1999.

Before joining Forrester, Liz was a health extension volunteer with the Peace Corps in Burkina Faso, West Africa and graduated from Amherst College with a degree in women’s and gender studies.

“Patient Experience Managers” are part of an emerging industry. Who knew?

My awareness of the efforts of people like Ms. Boehm and companies like Experia first came to light thanks to a comment I received on my Blog which pointed out that the hiring of “Patient Experience Managers,” or PEMs, is an emerging field in healthcare.  It was also only a week ago during the “Best 60 Minutes on Sunday Night,” a/k/a the “Health Care Social Media” TweetChat at 9 PM EST, when a new Twitter buddy suggested the possible creation or existence of PEMs.  I had responded to what I thought was his unrealistic suggestion by essentially saying, “Dream On.”  Well, thanks to the tenacious efforts of true Patient-centric organizations like Wego Health and Experia, I’ve learned there are actually current formidable efforts to modernize the “hospital patient experience” so that it’s quality catches up to the technology-driven increase in  Patient Care.  Maybe now hospital executives won’t immediately dismiss my idea to create YouTube channels in all hospitals to distribute interesting and entertaining hospital employee-created and hospital patient-created content to replace the almost “stick-figure” and “birds and the bees” videos which are currently looped on “medical information channels” shown on hospital patient room televisions.  Ever see a stick-figure drawn person get a colonoscopy? Check into an old hospital and channel-surf.

Influencing the Hospital Patient Experience

In any event, this Virtual Patient Panel consisting of myself and two (2) other experienced patients, Jody and Alicia.  Wego Health had their technology guru, Aaron, somehow connect each of our computer web cams to one hub such that it seemed we were on stage together being interviewed by Elizabeth Boehm, Director, Patient Experience Collaborative, Experia.  It’s funny but when I first saw Liz’s title, “Director, Patient Experience Collaborative,” I thought I was in the Twilight Zone or had just walked out of the 1973 futuristic movie, Westworld.  But once she began to ask such thoughtful questions to elicit useful information about our respective patient experiences, I began to feel as if all I have gone through in 200+ hospitalizations in various cities around the United States might actually have a certain aggregate value because now someone is listening to me who has the interest, motivation and even the influence to make experience-improving changes in the “hospital patient experience.”

However, since I am always candid and also inherently suspect of think-tank studies and managerial guru bullshit and I had never seen meaningful patient-centric job titles before in the many hospitals I’ve done time at, I asked “Liz” (she insisted we call her by her first name so the atmosphere was very casual) where in the United States are these hospitals who actually care about the quality of the hospital patient experience?  She then listed 15 prestigious hospitals and told me a little about other similar targeted efforts of Experia.  I was sold as she had me at “15.”  Moreover, after hearing my various answers and ideas throughout the 2-hour Patient Panel, Liz later commented that she was purchasing my Book, “Confessions of a Professional Hospital Patient,” for each of these 15 hospitals because I guess she was intrigued by my brutally candid yet respectful approach toward medical institutions and medical professionals despite having survived through so many nonsensical and avoidable demeaning and painful experiences within their respective control.

You’ve Got the Cure, Ooh, it’s your Attitude (the “Kinks”)

In terms of learning from my past experiences, especially those pertaining to the “hospital patient experience,” I try to think like a dog because I don’t want a negative experience to forever taint my intellectual capability to contribute to improving the hospital patient experience.  For non-animal lovers, this means I try to have the memory of a Short-Reliever Pitcher in Baseball so that one horrific experience doesn’t haunt anything I do, say or feel moving forward.  It’s like the lyrics in the Kinks song, “Attitude”:

You might have the illness, but you’ve got the cure
You’ve got the answer, you will endure
You’re the only person that’s gonna pull you through
Ooh, with your attitude

Chorus
Attitude, Oo Oo Oo
Your attitude
Attitude, Oo Oo Oo
Your attitude

In my youth it wasn’t so easy to have such a short memory and pleasantly forget about the times a Nurse Ratchet-type insisted on re-inserting my Foley Catheter because, crazy me, I had been urinating into the toilet and not into a urinal container where they could measure my “urine output” since the doctor had removed the Foley Catheter earlier in the day and that was the hospital’s protocol – which I was never told about – or being hounded by the hospital television payment collection service while I was still in the midst of coming out of anesthesia from spinal fusion surgery.  While the $6.00 collection episode did not leave a permanent scar on me, I will never forget this innocent 17-year-old  kid carefully nudging me to tell me I owed $6.00 for 2 days of renting the hospital’s television.  I do remember, though, motioning him to come VERY close to my mouth to ensure he would hear my painfully strained answer when I said: “Do you really think this is the best time to try and move me, even an inch, to get my wallet and pay you $6.00 when it has to seem patently clear to even a moron that I am not a “high risk” flight patient?”  After contemplating for a few seconds the fallout he’d face from his boss Skippy, he nodded in agreement as if my answer was reasonable, but I wanted to share my surgical pain with him in the worst way.  What was once a painful memory is now a funny story.  It’s all in your Attitude.

Why the Focus on the Hospital Patient Discharge Process?

The questions posed to each of us on the Patient Panel seemed to focus on the Hospital Discharge process because according to Liz various studies had apparently indicated it as either the most troublesome spot for hospitals and/or that the Discharge process was an area most easily quickly improved.  When asked a related question, I politely told Liz that in my humble opinion the studies seem wrong because, and just by way of quick example off the top of my mind, starting Intravenous Lines with the dexterity of a Plumber, among other aspects of the hospital patient experience, seemed a little higher on my priority list for needing improvement since patient IV lines are the standard MO in all hospitals and initiating them is likely the most intimate activity that goes on between a patient and a medical professional besides memorable rectal probes.  My body gets over the occasional over-zealous rectal exam quickly but there are parts of my forearms which are still black and blue from my June, 2012 17-day hospital stay and areas around my wrist still smart and throb if they come into contact with merely fabric while I toss and turn trying to fall asleep at night.

Standardizing the times of Morning Doctor Rounds

Liz duly noted my comment and apparent well-rounded knowledge of hospital problem areas but as per her suggestion I decided to focus on the task at hand.  To that end, I classified the hospital discharge process as essentially one big cluster-fuck which could only be helped if doctors committed to standard “morning round” times so that patients could properly organize the various aspects of their departure which are not under their control.  This includes getting all written orders from doctors, all prescriptions, all warning signs and the patient’s coordination of obtaining a ride home from a family member or friend.  This reminded me of the numerous times when the hospital patient room had a sign on the wall which indicated all discharged patients must leave the room by 10:00 AM and I would tell a friend to come pick me up at 10:00 AM only to have to wait until 12:30 PM when one of my doctors would decide to stroll into my room to finalize my “orders” and write the necessary prescriptions for me to go home.  As a result, my friend or family member would have to completely reorganize their day and me and my Crohn’s Disease became an even bigger pain in the ass to them.   Accordingly, besides the logical implications of a more organized “Discharge Process” which takes patient needs into account, I think a more consistently standardized “morning rounds” physician schedule would give patients back some “control” over their situations which they understandably have to relinquish upon entering the hospital for the purposes of being treated most effectively.  I also think resuming control of one’s life is of therapeutic value and thus an aid toward the recuperative process so that’s another rationale for consistent standardized “morning round” times.

My Worst Hospital Discharge Experience

Liz also asked each of us about our worst experience being discharged.  My knee-jerk reaction left me with no specific answer other than to discuss the myopic almost survival-like state of mind necessary to “do time” in the hospital environment such that a quick re-admission to the hospital is the worst possible scenario and could lead to scarring mental conditions such as post-traumatic stress disorder.  Then I remembered when that happened to me at a world renowned hospital (from which I am now banned for life, by the way, for not letting them treat me a certain way medically when I knew they were wrong and later proved they were wrong by being diagnosed differently at another hospital) and how defeated I felt when repeated projectile vomiting in a hotel room across the street from the hospital left me with no choice but to return to the same floor in the hospital for another 15 days or so.  To that end, I will never forget the words of “wisdom” some moronic Intern rationalized with me when I was initially prematurely discharged and my belly was so distended I looked like The Michelin Man.  He said: “Sometimes you are healthy enough to be discharged from this hospital but not well enough to go [fly] home.”  It was such a load of self-serving crap and literally put my life in serious jeopardy as I almost joined music greats Jimi Hendrix, John Bonham, and **Eric “Stumpy Joe” Childs [from the band “Spinal Tap”] in the “Big House” as a result of choking on their own vomit. [**Technically, Eric “Stumpy Joe” Childs choked on someone else’s vomit but he is a fictional character, as his band, “Spinal Tap,” was created for the hysterical 1984 parody film rockumentary, “This is Spinal Tap.”]

The Perils of Patients Letting their Mental Guards Down

The two (2) other patients had some excellent suggestions for Liz in answering her variety of questions surrounding Improvement of the Hospital Discharge Process but I will leave those for the Video I am sure Liz and Experia will be compiling.  As for me, I brought up how the mental discipline required of hospital patients to maintain their sanity could get loosened up a bit once they start hearing the word “Discharge” (in much the same manner as Prisoners with the word “Parole”) so doctors need to be very careful when broaching the subject and condescending remarks alluding to Discharge could actually be hurtful to patients if they are based on style and not substance.  For some patients, I suppose premature enjoyment of the prospect of being paroled from the hospital is fine but, in all seriousness, it takes such intense mental discipline to adjust to the prison-like privacy parameters of a hospital during long hospital stays that delusions of grandeur can quickly set in if the word “Discharge” is recklessly thrown about by a medical professional in the hospital patient’s room.  This might sound like an exaggeration to folks unfamiliar with the hospital patient experience but some doctors use the lure of “Possible Discharge” to get their depressed patients from one day to another and there are MANY depressed patients in the hospital especially around holidays and before weekends.  Perhaps this is a necessary medical tactic but when it fails, the depression becomes overwhelming.

Identifying ALL Treating Medical Professionals on Discharge Paperwork

I also conveyed to Liz that I believe STRONGLY in receiving written Hospital Discharge paperwork which includes a detailed list of all the doctors and other medical professionals who treated me so that when I receive a Bill for $920.00 for three (3) in-hospital consultations by a Dr. Kardashian, I need to know who is trying to get paid for these services apparently rendered to me.  This has been a problem for me when, for example, I did not ask for the services rendered such as in the case of a psychiatric consultation sought by my condescending surgeon who couldn’t understand why I wouldn’t go along with the premise that he is God and therefore he couldn’t possibly be wrong about why I still couldn’t properly digest food so many days after his surgery.

I have also had situations where a mental specialist comes to “see me” every day I’m in the hospital just to “see how I am doing” all the while expecting to get paid by at least my health insurance company.  Sometimes it has been an honest misunderstanding and the psychiatrist had the purest of intentions.  But, more often than not, it appeared to be a scam once I recuperated and looked through the billing paperwork when the hospital bills started rolling in around 3 weeks after my Discharge.  In such instances, I am crystal clear with the psychiatrist in the hospital that I do not wish to retain his or her services and I denote in writing the date this conversation takes place.  It then becomes comical when the same doctor returns the next day offering to “discuss” why I don’t think I need his services and then weeks later I see psychiatric services “rendered” that 2nd day in the hospital on an invoice from the psychiatrist as if he treated me that day “to discuss why I feel I don’t require psychiatric care.”  Accordingly, I told Liz it would be nice to have a list of the “good, bad and the ugly.”  I also brought up to Liz how the Discharge process and even the entire hospital patient experience can be affected by disease-specific issues and it shouldn’t be.  For example, in some hospitals, Pediatric and Cancer patients get the white-glove treatment during the entire hospital patient experience whereas patients with Crohn’s Disease, Diabetes or Fibromyalgia are treated like the brother on “Keeping up with the Kardashians.”  What’s his name?

“Discharge” by any other name is still a Legal Term of Art

Liz also asked if “Discharge” should be called by another name to downplay its apparent troublesome meaning to-date or to brighten up the Discharge Process for patients who have good hospital patient experiences and positive medical outcomes. However, the attorney in me knows that some type of word or phrase is necessary to transfer medical liability away from the hospital when the patient leaves the hospital to properly apportion potential separation liability so phrases like “Recuperation Time” or “Going Home Time” are good ideas but not very practical because then lawyers wouldn’t know where to draw the line of culpability should the patient relapse or get worse after leaving the hospital.

The Conclusion:  Humanizing the Healthcare Experience

Like I said at the very beginning, in my humble opinion the Discharge Process from a hospital is a cluster-fuck.  While I sincerely appreciate the efforts of companies like Experia and people like Liz, I think the hospital patient experience could be more quickly modernized by focusing on basic human kindness and the logical opportunities for improvement which pop up throughout the hospital patient experience for medical professionals to treat patients the same way the medical professionals would want to be treated if they were patients.  That said, however, this is all finally beginning to make sense and I feel confident that companies like Experia and people like Liz are totally on the right track especially when their stated goal is: Humanizing the Healthcare Experience.

Leave a Comment

Hospitals, Patients, Social Media & Prison

1988 to 2012 – SAME “Hospital Patient Experience

I was recently hospitalized in a wonderful medical facility in New York City for the same surgery I had there in 1988.  The medical technology and level of patient care had surely changed and improved since 1988 but the “experience” of being a “Hospital Patient” hadn’t changed at all but for an upgrade in Patient Room Televisions.  That myopic “patient-centric” way of thinking reminded me of what my parents told me when they were kind enough to “buy” me my first car in college which was a beat-up 10 year-old hand-me-down vehicle with 120,000 miles on it: “Son, with a new pair of front tires, this car will be as good as new!”

Hospital Patients are now Business Customers

The challenge for hospitals from a patient perspective or the task-at-hand with hospitals who claim they are “patient-centric” is that they need to start perceiving Patients as Customers because their motivation for patient-centric ideas should be repeat business, positive word-of-mouth and staving off competition.  Otherwise, whatever is done to improve the hospital patient experience will come across just like the BS speech I was given about my “new” hand-me-down car. Based on my experiences from having been hospitalized over 200 times at several different hospitals over the past 25 years, it is therefore my contention that the “Hospital Patient Experience” needs to be substantially modernized so that it is reasonably commensurate with the technological advancements made in the area of increasing the quality of Patient Care.

But, in Hospitals, optimizing the “Hospital Patient Experience” is not any one person’s job or responsibility so there’s no accountability and the touchstone for all healthcare executives remains the quality of patient care.   This is not a bad objective in a “healthcare vacuum” but now in a much more competitive climate the patient is a true customer and the most successful businesses treat their customers the way they would want to be treated.  Whenever I am hospitalized, this responsibility always falls on my Nurse but he or she is understandably way too busy with their medical responsibilities to make a dent in the quality of my experience.  As per a new Twitter friend of mine Tim C. Nicholson (@timbigfish) said during a recent “Health Care Social Media” [“hcsm”] TweetChat, Hospitals should evolve into hiring “Patient Experience Managers” or PEMs.  I responded by tweeting I’d faint if I ever encountered such a PEM specialist in a hospital during my lifetime; but it would be a superb development.

How Hospitals can feel like Prisons

Unfortunately, my 2012 surgery, through no one’s fault, had many ups and downs so I was incarcerated “doin’ time” for 16 days and 17 nights.  Seriously, it literally felt like I was living in a prison not knowing when I’d get out or what I was to do there except watch repeats of “Law & Order” on the patient room’s upgraded television.  All the while, my doctors, nurses and various medical professionals diligently worked on me utilizing the latest technological tools and techniques.  However, after they were done, I still had approximately 22 hours each day to myself.  My doctors recommended that I walk around the hospital floor to ease the surgical pain and to “get things moving” inside of me.  Ever the obedient patent, I walked for what seemed like miles from one hospital Unit Floor to the next wheeling around my IV Pole which had various machines attached to it for the purposes of infusing different medications into me.  But without visitors on a given day, all I did was listen to my iPod and walk around the different areas of the hospital. With 22 hours of this type of free patient time, there has to be opportunities to enhance both the “patient experience” and the hospital’s patient-centric efforts.

After walking for the length of three (3) or four (4) 30-minute Podcasts, this left 20 hours of time to kill and this is when the “Hospital Patient Experience” feels most like being in Prison.  Call me crazy, but this seemingly close association with the ultimate penalty in our Penal System, can’t be good for the marketing of hospitals or for healthcare marketing in general.  In any event, and not that I know personally, but I’ve been told that in prison, where people are simply “doing time,” the incarcerated criminals use those 20 hours to exercise in the yard, socialize with other prisoners, congregate to watch movies, develop “shivs” for protection or to use to kill other inmates, etc.  I wasn’t crazy about some of my hospital roommates but my displeasure never rose to the level of trying to mold the hospital’s plastic dinner utensils into some type of shiv.  Seriously, with no thinking whatsoever besides security, prisons often offer more patient-centric activities than hospitals.  Is it just me, or is that beyond bizarre?

The Necessary Changes that will improve the “Hospital Patient Experience”

Hospitals are always looking for ways to say they are “patient-centric” but that’s like a supposedly beautiful woman constantly telling people how beautiful she is.  I will know how beautiful she is with my own eyes and the more she proclaims her pulchritude (I have been waiting YEARS to get that word into a story!) the less I believe it.  The same is true with hospitals and patients.

First off, hospitals must start perceiving patients as customers and in the process plan for repeat business, word-of-mouth referred customers and competition from other hospitals and “doc in a box” clinics.

Secondly, as part of this new approach, the various medical professionals in the hospital must LISTEN to patients so long as they are succinct and respectful of that professional’s time.

Thirdly, hospitals should STOP focusing on the phrase “patient-centric” as part of their marketing campaign or as a way of describing a particular hospital because it comes across like a Dunkin’ Donuts Store proclaiming they are “Donut-Centric.”  It’s a given, so hospitals must focus on what else sets them apart from other medical institutions.

Lastly, the most obvious change needed is for hospitals to modernize the “Hospital Patient Experience” to the point where it is commensurate with the cutting-edge medical care provided to its patients because of constant upgrades in technology and research.

Social Media is the most efficient Tool to improve the “Hospital Patient Experience”

The advent and proliferation of Social Media seems tailor-fit to help hospitals ease into the necessary transformation from Patient to Customer.  I just worry when hospital executives or so-called social media experts or consultants start touting “ROI” or “Return on Investment” as a consideration in the implementation of a Social Media strategy to help enhance the “Hospital Patient Experience” when posting Videos on a YouTube channel is free and utilizing a Facebook, Twitter, Google+ or Tumblr account is also free.  Yes, there is a cost for the people devising and managing these social media campaigns but it is negligible given the transformative powers these social media platforms possess.

In my humble opinion, the use, objective and importance of Social Media is different in a Hospital than it is in a typical Medical Professional office setting because being hospitalized for even a few days requires Lodging, Food, Socializing and the possibly of being ostracized from the outside world.   Therefore, I think practicing physicians in office settings need not be concerned with creating social media content for their practices or alternatively creating opportunities for their patients to communicate with them via different social media platforms.  Perhaps I am old-fashioned, but I just want my doctors to be as educated as possible on the newest treatments and then to provide them to me in a manner that is professional and pleasant.  My expectations for hospitals, however, are much different as I have explained above.

Formation of a Hospital YouTube Channel as an Example of a Social Media Tool

YouTube is becoming increasingly important because our society’s attention-span is getting shorter and shorter such that the passive communication medium of Video is preferred over reading by most people.  For the same reasons people want to get their news by watching CNN or “The Daily Show with Jon Stewart,” patients and their families would likely respond to video hospital communications. Moreover, placing videos on YouTube and organizing them by channel is FREE so, besides the costs of filming and personnel, YouTube offers hospitals an inexpensive marketing tool and simply by creating a Hospital YouTube Channel the hospital will be associated with a “cool factor” for participating in what has become the world’s virtual “common meeting area.”  Patients will also relate to the cutting-edge effort made by the hospital to try and make their patients feel more at home.  Accordingly, at a quick glance, creating a Hospital YouTube Channel has many advantages.

Content of a Hospital YouTube Channel

In terms of the particular content to place on a Hospital YouTube Channel, I defer to the creativity of each hospital but as a start I think it should include short “organic” or natural videos from the various medical professionals throughout the hospital so patients know who does what within the hospital environment.  In the process, patients will become more comfortable in that hospital environment.  This is significant since many chronic patients may be hospitalized for weeks or months and this type of familiarity with the hospital environment could help stave off the depression which understandably accompanies long hospital stays.  I think the hospital videos made by the Medical Professionals must also be made from their personal perspectives emphasizing their job responsibilities in a humanistic manner as if to seek a human connection with the patient.  The same way “Patients are People,” so are Medical Professionals.  These types of short videos should include contributions from a Resident, Intern, Chief Resident, Attending Physician, Covering Physician, Hospitalist, Floor Nurse, Charge Nurse, Patient Care Associate, Nurse Practitioner, Physician’s Assistants, etc.  Additionally, perhaps an executive from the hospital could explain what happens on holidays and weekends in terms of medical coverage since those are times which experienced patients have come to dread.  The practice of Pain Management should also be explained from the perspective of its availability, how a patient can initiate it and how these hospital physicians might interact with a patient’s Private Pain Management Physician.   Naturally, Emergency Hospital Evacuation Plans should also be explained.

These Hospital YouTube Channels should also include Patient Testimonials during which patients can contribute their thoughts regarding their hospital experiences, their hospital roommates, what they miss most about being hospitalized, what they can’t wait to do when they get out of the hospital, etc.  Patients should be approached by hospital executives with Flip Cameras when they are utilizing the 22 hours I mentioned above, i.e., while they are walking round the Unit Floor as part of their post-operative recuperation.   Patients should also have access in their room to a simpler way of notifying hospital executives that they would like to contribute a Testimonial to the Hospital’s YouTube Channel.  Patients should never be promised that their contributions will be aired because there will always be an editing process and while the hospital should most definitely post unflattering videos if they are well-reasoned and seemingly a patient’s true and intelligently articulated opinion, the hospital cannot guarantee that all patient content will be aired due to reasonable standards of taste and style.

The goal of all YouTube channel videos, however, should be to humanize the “Hospital Patient Experience.”  By doing that, I can then make the argument that these YouTube efforts towards modernizing the “Hospital Patient Experience” are now commensurate with the perpetual positive contribution of technology and research to improved patient care.

Bringing the Hospital’s YouTube Channel into the Patient Room

During a recent “Health Care Social Media” TweetChat a thoughtful participant asked me about how this YouTube idea could be utilized by an 85 year old Patient?  I thought: “good question with an easy answer.”  After all, hospitals need to update those looped 1950s-styled videos presently on the televisions in patient rooms.  Let’s face it, we no longer need to see how Mr. Main Street Doctor performs a colonoscopy or what open heart surgery looks like – especially when the videos look like they came directly out of the TV Show “Mash” as if they were filmed sometime around the Korean War!  Accordingly, Hospital YouTube Channels should be piped into EVERY patient room and even looped on a channel just like the aforementioned brutally boring shows so that 85 year-old patients will be entertained, engaged and informed.

Conclusion

The power of Video and modern technology is at a stage where it can make a meaningful difference in the “Hospital Patient Experience” and for the most part, it is FREE.  “ROI” analysis needs to be replaced, at least at this infancy stage of Social Media, with applications of Logic and Humanity.  Finally, hospitals who don’t take advantage of this relatively easy opportunity to balance the quality of the “Hospital Patient Experience” with the expensive research and technology-driven increased quality of Patient Care have no business calling themselves “Patient-Centric” when the term “Prison” is more apropos.

Crohn’s Disease Surgery: 17 Days “in the Joint”

On June 11, 2012, I was admitted to Mt. Sinai Hospital in New York City for what was approximately my 17th surgery for Crohn’s Disease.  Like the crew and passengers on “Gilligan’s Island” who set out to sail on the “S.S. Minnow” for “a three hour tour,” I was told to be prepared to spend 5-8 days in the Hospital.  However, due to my extensive surgical history, I knew there was a good chance of complications and that I could be “in the Joint” for several more days.  Sure enough, just like Gilligan and the Skipper, my “three hour tour” turned into 17 extremely challenging days in the Hospital, or “the Joint,” as chronic patients refer to it.  Unfortunately, I also had to survive without Ginger and Mary Ann.

What 17 Days in the Hospital, or “Joint,” Taught Me

More seriously, after a few additional unexpected days of vulnerability, reliance on impersonal medical professionals and overall confinement, the hospital starts to feel like a medical prison of sorts.  The effervescent personalities and supreme competency of most Nurses helps but it’s still human captivity.  Perhaps unlike the “Hotel California,” you can always leave but the various IVs in your veins and the Foley Catheter in your Private Part indicate otherwise.  Moreover, it has been my experience that how one copes with being a medical prisoner most assuredly affects their recuperation and state of mind going forward. Therefore, below is a summary of my most helpful and entertaining thoughts from each day “in the Joint.”  It is my hope this detailed but succinct recollection helps other patients when they are faced with unexpected delays in their discharge from hospitals no matter what the underlying disease or problem.

But First:

Nurses are the Backbone of the Healthcare System

Please also remember that no matter how great your Doctor is, the quality of your stay at the hospital is largely determined by your interactions with the Nurses who are the only medical professionals whom have contact with you 24/7.  These wonderful professionals are also responsible for your “continuity of care” such that tomorrow’s doctor knows about what happened to today’s patient. (Unfortunately, many doctors only believe their own eyes and skills of perception and that’s how they impede the progress of our healthcare system.)  In any event, no other medical professional is responsible for such comprehensive Patient Care so try and appreciate your Nurses and tell them how much you respect their efforts.  Also, hospitals now engage Hospitalists and Nurse Practitioners (“NPs”) to try and simplify and streamline the experience but if you are hospitalized more than a few days you quickly notice how our present Hospital & Healthcare Systems are not your Father’s “Marcus Welby, M.D.”  Rather, they are more like a modern day cluster-fuck, especially for those with chronic illness.  So, try and stay out of the hospital as best you can because once you become a Patient, all bets are off.

The Use of Social Media in the Hospital

My last observation regarding the “hospital patient experience” is that I am tired of listening to hospital executives struggle with how to incorporate social media into their businesses.  All it takes is one executive to stay in the hospital as a patient for 24-72 hours and he or she will realize that there is so much downtime that a hospital employee should ALWAYS be walking around with a Flip Camera or microphone obtaining Patient Testimonials of all sorts.  Some may be good; some may be bad.  Either way, these sound bites will modernize the experience and improve patient care.  Whether patients opine on their surgeons, doctors, nurses or even the facility, there is much to be learned from the new patient consumer and I can’t think of a better way than to capture it in real time using modern-day technology which can be shared across all platforms of social media.  Not everything they hear will be good but patients will understand the hospital’s intention of capturing their insights and thus will more often than not contribute useful personalized nuggets of modern-day information which will help bring hospitals up-to-speed in terms of operating as both a business and a source of patient care.

The Surgery

Based on detailed and exhaustive diagnostic testing of my small bowel, I went into the June 11, 2012, surgery knowing I needed repair of three (3) Strictures (or substantial narrowings) in my small intestine via a surgical technique called a “Strictureplasty” and possibly one (1) “Resection” if the culprit was diseased intestine instead of Adhesions.  My surgeon performed each procedure expertly but he expressed concern that he had to cut through Adhesions (i.e., Scar Tissue) for almost 2 hours before he could even get to my small intestine. With Crohn’s Disease, surgery is not an ideal treatment because the disease typically recurs and thus could warrant additional surgery.  Since each patient has only a certain amount of small intestine, patients should only undergo surgery when nothing else works.  This explains my predicament as no Crohn’s Disease medications have been able to slow down the advancement of my rather aggressive disease.  In terms of Adhesions, scar tissue forms with EVERY surgery and more surgery begets more Adhesions.  In fact, on more than one occasion, I have had Crohn’s Disease surgery simply because Adhesions had grown such that they were blocking my small bowel.  Therefore, having so many Adhesions is unfortunately a part of my life since I’ve already had 16 or 17 Crohn’s Disease surgeries in and around my small bowel and that would explain the cocoon of sorts my surgeon encountered and had to cut through when he opened me up to operate on my small intestine.

A Recent Surgical Memory Made me Anxious

A few days before I was to report to the hospital for the June 11, 2012 surgery, I started to think about my 16 previous small bowel surgeries and the pain and unpredictable ups and downs I experienced while in the hospital and at home after the surgery. I also started to freak out about that particular moment being rolled into that sterile silver-shining surgical suite looking at a Black-n-Decker-type saw joking around with the various medical professionals attending to my surgery knowing that once they gave me the Michael Jackson “juice” I was going to wake up in severe pain with yet another abdominal surgery to recuperate from.

But truth be told, my mind was also playing tricks on me more than usual because of my last abdominal surgery in 2010 which involved a very talented surgeon at a world renowned institution who nonetheless had the personality of a handball and was more interested in his post-operative statistics than in my welfare. I can’t prove this so I am leaving his name out of it but his post-operative actions certainly would make a reasonable person wonder about his priorities.  So, when my body was slow to “wake up” after the surgery in 2010, his staff still started me on the bowel recuperative ladder of clear liquids than full liquids than soft foods simply because I had told them I thought I had “passed gas” in my sleep.  That is partially my fault because after not eating for many days the mind’s inclination is to error toward passing wind but the speed with which I was bumped up from clear liquids to real food was nonsensical, especially with a patient like me who already had 15 or so surgeries in my small bowel.

The Benchmarks of Bowel Surgery

Please follow me on this and trust I am utilizing medical terminology:  Passing Gas after bowel surgery is the 1st touchstone of success like when NASA shoots off a Rocket and it flies straight up to the moon.  In keeping with the NASA metaphor, having a bowel movement is like walking on the moon and returning to the ship without incidence.  Passing Gas also indicates moving ahead with a clear and full liquid diet while “laying a log” means you are ready to forge on ahead to the $99,000 question, or graduate to eating soft foods. This is the logical bodily function measurement of success after bowel surgery so long as your bodily functions kick in normally after you drink and eat.  The exception is if you become “Distended” where your gut starts to noticeably stick out indicating that the liquids or food are not being properly digested.  Gross Abdominal Distension is VERY painful but the body’s natural protective powers alleviate this pain prior to your stomach exploding by Projectile or Violent Vomiting.  This is not the slickest of super powers but the pain of Gross Abdominal Distension after bowel surgery will make you wish you could vomit if only to alleviate the pressure.  (I apologize for the graphic and somewhat gross terminology but in the hospital these words are “terms of art” so please cut me some slack as I’m trying to be 100% honest in the hope that others learn from my misfortunes.)

The Perils of Gross Abdominal Distension

In the days following my 2010 surgery at this world renowned facility, my surgeon’s team discharged me because presumably I was eating and had passed the flatulence and defecating criterion despite looking like Santa Claus after gouging on 35 White Castle hamburgers.  However, on the day of Discharge, when my family was flying home to NJ from this hospital, I begged the intern and resident (the surgeon was too arrogant to meet with me and face his “failure”) to reconsider my Hospital Discharge because I obviously was not ready to be discharged.  I could see their eyes examining my grossly distended gut and their brains beginning to listen to me with cause to be concerned but they told me that patients often are well enough to be discharged from this heavenly hospital but at the same time they may not be well enough to return home as the pressure in an airplane could make a distended or prematurely healed abdomen explode.  Nice.  Their lawyers must have coached them well.

Mama Cass & Projectile Vomiting in a Small Hotel Room

My Mom and sister boarded a plane back to New Jersey but not before getting me a hotel room directly across from the hospital.  Since we were trying to save money, I opted for the smallest room and that is exactly what I got.  Standing in the middle of the room, I could stretch out and touch the 4 corners of the sleeping area with the TV and bathroom only feet away in different directions.  Like anyone hospitalized for a significant period of time, I was relieved to be out of the hospital but I still felt painful pressure in my midsection as whatever I had eaten was forcing it’s way either down my bowels or up through my mouth; whichever was the force of least resistance.  My money was obviously on gravity but I never was that lucky in gambling.  Sure enough, at 3 AM or so, my body decided which way to go and I was awoken while in the middle of Projectile Vomiting all over myself, my bed, the TV and anything within 6 feet of my mouth – and nose.  UGH.  Besides the obvious, I was also Homesick and took no solace in the fact that I was right in not being ready for Hospital Discharge but there was no female to impress and even if there was, I didn’t exactly look like I had just made the winning catch in the Super Bowl.

Please understand that I’m not trying to write salacious details; all I am writing is the truth.  I was all alone, thousands of miles from home and having almost choked on my Vomit, I didn’t want to go out as a Mama Cass-type personality who bought the farm at a hotel room not even 100 yards from this presumably great hospital.  So I cleaned up everything that had even a hint of my insides on it and assumed I had evacuated enough to take a shower and go back to sleep. I was even optimistic that perhaps I could fly back to NJ the next day since there couldn’t possibly be anything left in me after I hit the TV while regurgitating.

While showering, I started to review the events of the past few days and I grew angrier and angrier since had my 2010 surgeon EXAMINED my Gross Abdominal Distension, he would have noticed that something was wrong because my belly was so “blown up” I looked like the Octomom carrying at 8 months.  I also had a very serious incision which ran almost the entire length of my torso so at that time in the shower there was no time for playing the blame game as I had to switch gears back into Survival mode.  In keeping with my reasonable goal of not waking up vomiting, I tried not to think about my horrific experiences at this glorified hospital and went back to sleep.  But at 5 AM I was awoken again in the middle of Projectile Vomiting and it seemed my body was in convulsions since not much was coming out but I was gagging so furiously that I could barely breathe.  Even my Bookie could have told me that I needed to be Re-Admitted to this hospital so I called this “world-renowned” hospital to make the arrangements and in my post-operative state during which I couldn’t lift more than 10 pounds due to my entire torso being cut from top to bottom, I packed up my luggage, called the Concierge and explained my situation. The Concierge could not have been nicer and told me to just leave my luggage outside my door and they will store it for me indefinitely at no cost.  I warned her that the room was nasty but she brushed it off and made me feel like a priority.  She then told me to worry about nothing but getting better and just get back to the hospital safely.   Contrary to my experiences at the arrogant hospital, there are nice people in this world.

The Longest Yard – Back to the Hospital

As soon as the hotel porter arrived, I gave him $20.00 and babbled the least gross details I could muster up to best explain my situation.  He was very cool and insisted I let him walk me to the hospital.  The hospital was only a cross-walk away but it was the longest 100 yards I ever had to maneuver as I was weak, dizzy and still occasionally vomiting or at least gagging.  It was like “The Longest Yard” except no-one would have paid admission to see the ugly show I was putting on.  I looked like the character “Caretaker” had he survived the explosion in his prison cell.  I was running on adrenal because I didn’t want to die 30 feet from this hospital since that would be the way people remembered me.  “So close, but yet so far.”

A Great Hotel Porter & a Schmuck of a Surgeon

It’s funny what you think of when you are seemingly faced with your mortality.  I tried to guide my mind to some of the beautiful woman I have been privileged to know but the prospect of being re-admitted to the hospital drowned my positive thoughts with a very harsh reality.  Anyway, someone from the hospital put me on a gurney and wheeled me the rest of the way to re-admission.  At that point, the Hotel Porter had made the hand-off and was leaving.  I thanked him and warned him to have his underling clean my room.  He smiled and moved close to my ear and said: “Don’t worry, Mr. Weiss.  By the way, how in the world did you hit the TV?”  He smiled, I laughed.  A light moment I so desperately needed in light of what was to come over the next few days and weeks.  When I got back to a Patient room and had my first interaction with my arrogant Surgeon, he ignored the fact that I was discharged too soon and blamed ME for not “opening up” fast enough.  It felt as if he had post-operative surgical statistics and I was that outlier patient who ruined his average.  I begged him to listen to me but he had his mind made up.  It was the worst of post-operative experiences especially since it stemmed from my surgeon NOT LISTENING TO ME.  That worried me and will always worry me with respect to any surgical procedure.

It was this lovely 2010 experience which was etched in my mind as I made my final arrangements for the June 11, 2012 Surgery.  (Note:  My 2012 surgeon seemed like the opposite of the schmuck who operated on me in 2010, and he proved to be so, but my mind was so affected by the aforementioned experience that I couldn’t help but worry.)

Below are contemporaneous notes from my experiences in the Hospital during the day and date indicated.

June 11th – Day 1 – Date of Surgery

I reported at 11 AM for a 1:30 PM surgical tip-off time but as soon as I arrived at the Pre-opt area they rushed me.  Preparations went so fast that I did not have time to contemplate how difficult this hospital stay might be.  Before I knew it, I was dressed for surgery lying in a bed in the “on deck circle” but not knowing my number in the line I was in.  I then saw my surgeon and he was very reassuring and promised me that given my exhaustive experience he would ALWAYS consider my body’s past experience.  His words gave me tremendous confidence.  As soon as he left the pre-surgical area, a couple of anesthesiologists asked me to sit up as they started grooving the Epidural into my back.  It was all becoming too real.

Once the Epidural was secured, I was rolled into the Operating Room and for some reason I did not have a panic attack as the entire crew of medical professionals were nice and funny.  Maybe they hid the Black-n-Decker Table Saw from me?  Strangely, my biggest fear after surgery is being COLD and in Pain.  I think it is the Vulnerability each sensation causes.  Together, they make you feel like that dream when you are in the 6th Grade Assembly on the stage fully naked in front of all your classmates.  They had me on the drug Fentanyl and also gave me a “PCA” Pump which is a Patient Controlled Analgesic gadget which allowed me to give myself doses of the Fentanyl every 6 minutes.  They were supposed to also put Fentanyl in the Epidural but they did not, at least at first.  All in all, though, for the first 10 hours after surgery my pain seemed to be under control and the nurses were fantastic.  They really made me believe that I was getting personalized attention because this was my 17th surgery.

Tuesday, June 12th – Day 2

My sobriety was unpredictable but I do remember my surgeon coming in and explaining that my surgery was a success but that he had worked more on freeing up my Abdominal Adhesions than he had on any other patient.  That freaked me out because as I get older (I’m 49 as I write this), Crohn’s Disease surgery simply begets even more surgery no matter how successful it is.  For that reason I must train my mind to accept that there is a very good possibility I will be back in that Operating Room because of these Adhesions and also because where the surgeon did the Resection the subsequent Pathology Report indicated that it was active Crohn’s Disease and there are presently no Crohn’s Disease maintenance or prophylactic medications I could take having exhausted even the cutting-edge Biologics.  Notwithstanding the foregoing sobering thought, I had to direct all of my survival skills on the matter at hand and that was overcoming this surgery with adequate pain relief and trying to stay even keel throughout the inevitable ups and downs of the hospital stay.

As I began to wake up from the anesthesia, the pain medications started to fail me because with each passing 30 minutes my gut and almost entire torso began to feel raw as if my surgery were performed only a few minutes ago.  I informed my nurse but I was in such intense distress that it was obvious to everyone that something needed to be tweaked to help me.  Having been through this so many times, it is difficult to continue to participate in what I call the “pain management trial and error approach” but I had no choice.  Accordingly, at first the very nice folks in pain management increased the PCA “Bolus” (i.e. a one-time shot of increased medication) which was the amount of extra Fentanyl I could get every 3 hours or so to help myself.

But after a while even that wasn’t enough so they increased the 6 minute dose along with the frequency of the Bolus, i.e., instead of every 3 hours I could get it every 2 hours if I asked.  Then one of the nurses realized they hadn’t put Fentanyl in the Epidural and that seemed to explain why I was still in such discomfort, so once they did, all of these combinations seemed to calm my pain to an acceptable limit.  This is what I mean by the “trial and error approach” because they want to give you the least amount of pain medication as is possible while also resolving your unreasonable pain. I detest this process since my body has established enough data to provide correct starting and increase points but almost all doctors ignore patients in this regard.  Surgeons want the body to work as naturally as possible and narcotics tend to slow down the intestines.  Since increased bodily functions get the patient an advanced diet and subsequent discharge from the hospital, all of the doctors try to keep the amount of pain medications to just the amount necessary to take the “edge” off the pain.  However, for the first 2-3 days of full-blown abdominal surgery, the doctors understand it is amongst the most painful surgeries so they let you take what you need to soon at least get out of bed and stand up.  I’ve always required a large amount of narcotics due to the combination of high drug tolerance and low pain threshold (this is a byproduct of too many surgeries) and I’m getting tired of having to prove it by screaming in pain.  But, that’s the game.

As an experienced surgical patient with this exact surgery, I knew that I would wake up from surgery with 2 IVS and a Foley Catheter (this goes directly into your man or womanhood and prevents the need to get out of bed to urinate so that you could rest), so I needed some help as there’s nothing more frustrating than having all these attached tubes and intense pain but yet needing to move a bit to answer the phone or to change the temperature in the room.  I find it difficult to call the Floor Nurse for such mundane matters when they have more pressing needs with other patents to address so I hired a “Nurse’s Aid” or “Nurse’s Assistant” from Tuesday Night, June 12th (i.e., when I figured I would truly wake up from the surgery) until Friday morning, June 15th when I knew I would have the Foley Catheter taken out; I’d be in more manageable pain; and I would be much more coherent and able to “fend for myself.”

Hiring a Private Nurse was out of the question (although I did hire one years ago when it was patently obvious that the nurses at Mt. Sinai Hospital were overworked with 8-10 patients each) since I did not need a Nurse’s expertise, and, besides, they typically cost $75/hour. But Nurse’s Assistants are only $300 for each 12-hour shift and they are wonderfully trained to help patients with anything and they always seem to show up with enthusiastic attitudes and that helps with the mental recovery.  Also, the Nurses at Mt. Sinai Hospital on Floor 9 East are THE BEST for gastroenterology problems.  The Nurse’s Assistants also helped me get up off the bed and walk which is a key to getting the body back to normal.  Without them, it would have been impossible to organize the 2 IVs and the Foley Catheter just to take a walk down the hallway.  They also made sure my Room and I was clean and that I was getting all the medications on time since I was still too vulnerable to speak for myself.  I also like to have Nurse Assistants for the 1st few days because it puts less pressure on my friends and family to come by every day when I could do nothing more than moan and groan.  But come Friday morning at 7 AM, history demonstrated I would feel I was capable of managing my own affairs.  Besides,  while I could always use the physical assistance, I couldn’t afford even their reasonable price of $300.00 per 12-hour shift after indulging myself for the 3 1/2 days of Nursing Shifts.

Accordingly, I highly recommend Nurse’s Assistants for anyone who has anxiety about the post-op process or for anyone like myself who won’t have people visiting them routinely since they figure you are an old pro at handling surgeries. That’s a reality I hold with contempt because these surgeries only get harder and harder each time and I wished most of my friends and family understood that.  But then again, I think it is human nature and I try to ONLY focus on the positive when I’m in the hospital.  I don’t keep a list of who called or visited and who didn’t.  I’d rather smile and laugh with those of my friends and family who think enough about me to visit or call repeatedly than to build up animosity toward other people who could have a million reasons why they did not call or visit.

Wednesday, June 13th – Day 3

Roommates in the hospital can make or break your stay that’s why you MUST bring ear buds to drown out snoring as you listen to your iPod and be careful about getting too close to your roommate as some could have life-threatening diseases and it becomes very sad when you overhear them get bad news. I found this out when the doctors did their Morning Rounds with their residents on Wednesday morning at approximately 6:30 AM and the main doctor treating my roommate, whose bed was the first one as you came into the room, treated OUR room as his office.  Yes, a curtain divides us but when the doctor turns on the lights and I can hear everything that goes on and the doctor talks so loud it’s as if he’s in his own office, it feels intrusive until you consider that you are in the hospital and your privacy zone extends just to the tip of your nose.  Also, I was sleeping when he came in, which doesn’t come easy in the hospital, and I was so close to calling him Sergeant Hulka and advising him that “I know I speak for the whole platoon when I say that today’s 12 mile run should be cancelled….”  I was dreaming about the Bill Murray movie “Stripes” since I watched it on my laptop just before going to sleep.  Bottom line:  there is very limited privacy in the hospital and the sooner you get used to it, the better.

Turns out my VERY nice roommate had Colon Cancer and a few days prior had some type of bowel surgery to remove cancerous growths.  So, his surgical healing was secondary to his recovery and we did not speak much but I did pray for him.

As I was now getting into the hospital routine by going to sleep at 10 PM and rising at 4 AM (assuming a Patient Care Associate did not wake me at 1 AM to give me a sleeping pill) when the nurses took blood so that the results were ready for the doctors by the time they took Morning Rounds @ 6:30 AM, I had also become in synch with the Patient Care Associates waking me up every 4 hours to take my Vital Signs.  You can refuse but they still woke you up.  Additionally, with few exceptions, every hospital patient must have an IV line connected to them for emergency purposes but IV lines typically last for a maximum of 4 days.  Thus, I was getting close to being stuck again for my new IV and due to my various surgeries and hospitalizations, my veins have scar tissue in them and this makes me VERY hard to stick.  The nurses tried their best not to hurt me but after a while I felt like a pin cushion with both arms black and blue from successful and non-successful attempts at starting an IV.  Somehow you must “give-in” to this culture but every once in a while I refused a blood test because I felt it was superfluous for the nurses to take my blood every day when my ultimate problem did not involve my blood counts.  If a doctor corrected me, I did whatever he or she said.  In any event, I was ALWAYS respectful toward the Nurses.  You can disagree with them or refuse treatment but you must always respect them.

With my Nurse’s Assistants almost finished with their 3 1/2-day assignment, I tried to walk as much as possible with them on Wednesday to try and get my insides moving with bowel sounds.  No-one can predict when it will happen but walking around sure helps.  As things began to move around inside, I was getting increased pain from the gas bubbles moving through my bowels trying to make their way all the way through.  At times, the gas pain was so bad that I couldn’t answer the telephone or speak to people because all that came out of my mouth were moans and groans.

Thursday, June 14th – Day 4

During Morning Rounds, the surgical team of residents told me my nurse would be taking out my Foley Catheter today.  They also noticed I was moving quite nicely thanks to the aid of the Nursing Assistants and due to the Epidural which was taking away the most serious of my pains so they also suggested that I go from sucking on ice chips to advancing to a clear liquid diet.  The aforementioned nightmare experience in 2010 had somehow escaped me at that moment and besides, I figured how bad could some apple juice and yellow Jello be?

My nurse took out the Foley Catheter and it doesn’t hurt but it feels like an 8 second burst of tremendous pressure and then it is all over.  What a relief.  Now I only had 2 IVs but I was able to maneuver out of the bed without much help or fear of ripping a line out of me as I got out of bed.  When lunch and dinner came, I drank my clear fluids and the day’s activities were done.

Friday, June 15th – Day 5

When I woke up I noticed my abdomen was grossly distended and I was in a great deal of pain from the pressure this distension was causing me.  My surgeon completely understood but even he felt that this was just a temporary setback and he told me to drink the clear liquids if I felt like it. But then I remembered the events of 2010 and I hit the brakes and told the entire surgical team that I was not eating (or drinking) until the distension went down.  (I also know that my surgeon and the hospital must deal with my health insurance company which allots a certain number of days for this type of surgery and I was headed to exceed it.  It doesn’t make a difference that I am a “difficult case” until my surgeon concludes as such and communicates that to the insurance company.  I think he was waiting until after the weekend to do that based on my progress or lack thereof.)

The rest of the day I walked around trying to tire myself out in the hope that my body would go back to normal and I would resume my bodily functions.  It seemed to work because small amounts of gas started to seep out below and this was music to the ears of the surgical residents. This is when you must know the difference between Interns, Residents and YOUR SURGEON.  The Residents and Interns are smart and hardworking but they are learning.  I added to their learning curve by telling them that the gas I expelled was not the type which indicates I am “open.”  I sensed some of them nodding their heads in unison almost as if to say: “We are Interns and Residents.  This is just a Patient.  We are smarter than him.  Who cares what he says.”  However, others found my case intriguing and were willing to listen to me as long as I did everything they said.  All I know is that I tried to uphold my end of the bargain.  I also understand that many of these interns and residents get treated poorly by some Attending Physicians so they often take it out on unsuspecting patients by walking out as the patient is talking.  So I purposely write down my questions beforehand and preface my comments with a respectful plea that they not go anywhere until I am completed with my questions.  If I show respect for their time, they should reciprocate.

With the weekend coming up, I grew anxious about the Covering Doctors since weekends in the hospital are filled with the most junior of medical professionals with some rare exceptions. In that regard, I had a peculiar run-in with my own private Pain Management Doctor who now was taking over my case since the hospital’s Pain Team had removed the Epidural Friday morning.  I thought that was rather quick but they scared me with the risk of infection so I acquiesced.  However, I knew from experience that it would take approximately 5-10 hours for me to feel the difference with the Fentanyl loaded Epidural now out of my system.  For that, I wanted pain relief because sometimes that onslaught of pain can be overwhelming.

I discussed this fear with my Pain Management Doctor and he blew me off.  I was still close enough to removal of the Epidural to act competently and I tried my best to respectfully ask him to listen to me and to please give some credence to my experience with these things.  But he just did some calculations regarding how many days I was post-op compared to how much medicine I was on and was ready to write prescriptions for minimal pain medications which would have been a disaster waiting to happen.  It is also important to point out that he did not once ask me how I felt or if I was getting adequate pain relief.  He was like a robotic machine without any personal skills.  He then started telling me what he intended to prescribe and I respectfully said that the amounts he was suggesting would not be enough for me to avoid withdrawal and/or from getting adequate pain relief once the effects of removing the Epidural took hold.  Then, without provocation of any kind, he started berating me and telling me to tell him what to write.  I explained that between his medical knowledge and experience and my experience with 17 surgeries, we could come up with the correct combinations of drugs.

He then seemed to lose his patience with me and repeatedly berated me with comments like: “Tell me, what should I write?  You’re as smart as a doctor, tell me.”  He was like a petulant child and I had no patience for his disrespect of me especially when it came to my pain control.  I’d been through enough and wasn’t asking for much. He is the junior member in the Pain Management Practice I use and my doctor, the Primary Shareholder in that Practice, was off on vacation so I was stuck with this arrogant a-hole.

When I gave him background to all the points I had made, he threw his prescription pad up in the air and told me that I was going to get what I wanted anyway so what do I want?  His attitude belonged in a Lee Myles Transmission Shop and not a Hospital but I still kept my composure and told him I just wanted him to treat me on a personalized basis commensurate with how I have been treated in the past.  I added that I have no idea what I needed but then I listed what had and what had not worked for me.  We finally came to some agreement but it did not account for possible effects of the Epidural being removed.  This was the second time in 6 months I had a run-in with him; the first time being an emergency during which he again scowled at me but later called me to tell me he had an argument with his wife and should not have come down on me so hard.  I was stunned then and disappointed now.  But proving history repeats itself, a few hours later this jackass came back into my room and apologized for his behavior as he realized he could have dealt with things better. I told him I didn’t take it personal and shook his hand.  I lied.

Saturday, June 16th – Day 6

Amazingly, my Surgeon was in the Hospital BOTH Saturday and Sunday.  On Saturday he removed an 8-10 inch “JP Drain” which had been inserted into my abdomen during the surgery to give the doctors a window into the wound but now it needed to be pulled and sealed up since the skin around it was getting red from its desire to close my abdominal wound. Much like with the Foley Catheter, I was to experience an 8 second “discomfort” but this was much worse because it had essentially grown into my abdomen and when the doctor pulled it out it felt like he was pulling out my private parts through my abdominal wall.  UGH.

I was still grossly distended and wasn’t really passing any gas so the pain was actually increasing a bit.  Additionally, I started to feel the effects of the Epidural being removed and at times my speech was incoherent; that’s how much pain I was in.  The doctors don’t like to increase the pain medications because they slow down the body’s natural process of peristalsis which will only compound the Abdominal Distension problem.   Accordingly, I was apparently on the maximum pain medications I could be on and they all assumed the rest of the pain was just cramps or gas moving through my “new” intestines but it hurt like hell.  I obviously had a large bowel movement moving through my body and each time it moved an inch, I couldn’t talk for an hour.  It was SO uncomfortable but I knew that is the nature of the beast.

I then had another run-in with my Jackass Pain Management Doctor who was getting “nervous” about the amount of pain medications I was still on now that it was several days post-op.  I tried to explain to him, when I could talk, that my case is different than others since I’ve had 17 surgeries at this same spot but he didn’t care.  He was just worried about his own behind.  This stemmed from him slightly increasing my Bolus of the pain medication Dilaudid since I was in so much pain I couldn’t even speak.  I told him I was afraid this would happen once they pulled out the Epidural but he didn’t care. In fact, he again berated me and told me that if I became sedated because of the new Bolus, “That was it!!!!”  I didn’t even know what that meant but I asked him if it was really necessary to get so adversarial with me when I was in such a compromised state?  He countered with some long diatribe about the DEA being on his back and he has a wife and kids and wasn’t jeopardizing it for me.  It was bizarre and something I will take up with his Boss, my doctor.  I then not so politely told him to get out of my room as I didn’t need the negativity.

Sunday, June 17th – Day 7

Nothing much changed on Father’s Day except I appeared to be passing more gas so my Surgeon told me to take small bites of Soft Foods just to see how I feel.  I trusted him emphatically since he clearly trusted me.  He felt that maybe that would stimulate a bowel movement.  With the memory of 2010 not far from the forefront of my mind, I nevertheless did exactly what my surgeon said.  The difference was the mutual Trust and Respect between us.  My surgeon also went out of his way to tell me that he was taking my lead and that I need not worry no matter how long it took to open up.  His confidence in me was quite reassuring.

As it was also Father’s Day, I was glad my two best friends did not come and visit me since they had families of their own and I did not want my situation to come between them.  Therefore, I profusely thanked my friends for their uplifting efforts but pleaded with them to stay home and enjoy their wife and children on THEIR much-deserved day.  People should experience the kind of friendships I have.  My college roommate treats me like a brother and every time I watch the TV Movie, “Brian’s Song,” I think of him because there is nothing he won’t do for me.  My other friend has such a pitch perfect sense of how lonely I get and just pops up whenever he can just to hang out with me and make me feel normal.  These are not obligatory visits.  These are visits from people who care a great deal about me and I’m lucky to have friends who are that thoughtful & unselfish.  I could go on and on about what each has done for me but suffice it to say, they become the HOPE which sustains me when I am in the hospital and without them I could never muster the courage to deal with the hospital and doctor BS I must deal with in order to get well.

Monday, June 18th – Day 8

The accumulation of drinking the clear fluids and just a few bites of soft food made my abdominal distension get much worse and the pain was excruciating.  People tried to call me but I couldn’t talk on the phone, that’s how much pain I was in.  I also did not want visitors because I felt so vulnerable and in so much pain that I couldn’t carry on a conversation.  It was misery.  I felt like a dog hit by a car clinging to life at the side of the highway.  There was nothing anyone could do for me except let my body do what came natural.

After Morning Rounds, I went for my usual walk down the hospital hallway listening to a Sports Podcast to insulate myself from the unique sounds of the hospital.  I turned around and headed back to my room and as I was maybe 20 feet from my room a nurse who I had never seen on the floor before said, “You don’t look good, are you alright?”  I politely thanked her for her concern and then headed back to my room paying no mind to what she had just said.  At this point I was also feeling pangs of a possible bowel movement so I rushed to the patient bathroom and quickly sanitized the toilet bowl and all the surrounding areas with the bottle of Ammonia a nurse had secured for me and sat down.  (It is a MUST to at least accumulate a batch of those Alcohol Pads the nurses use to sterilize injection sites or better yet, a bottle of Alcohol for the purposes of sanitizing the entire toilet bowl area so that when that “urge” comes a knockin’ you can quickly clean the seat and surrounding area and then sit to do your business knowing you’ve counteracted all the hospital nastiness which gathers in that area of the Patient Bathroom.)

I knew that after surgery it was either going to happen or not and the bowel movement was going to happen when it was good and ready.  Still, everyone who is post-op obsesses over its arrival because that means the patient can eat and soon leave the hospital.  But as I sat down on my sanitized seat, I felt that unmistakable feeling that I was about to vomit.  I quickly switched positions and then my Projectile Vomiting experiences of 2010 came rushing into my brain as my stomach went into these uncontrollable spasms of regurgitation which included “stuff” coming out of my nose!!!  I tried to aim everything inside the toilet bowl but the spasms were so powerful that fluid ended up everywhere.  All I could think about was my poor roommate since he too was waiting for a bowel movement to be discharged so I immediately called the nurse and they had the cleaning staff sanitize the bathroom.

The abdominal distension felt better immediately but vomiting didn’t exactly mean that all was okay.  In fact, the surgeon ordered two (2) suppositories for me to use over 4 hours and for the 1st time in my life, nothing happened from taking a suppository.  For me, that was like lighting a match to gasoline and nothing happening.  It was SO frustrating.   My inability to keep things down sparked talk amongst the residents of inserting the dreaded “NG Tube” through my Nose up and then down into my stomach crating a siphon effect to remove all liquid and gas that otherwise would be built up in my abdomen.  I had this done many times before and it was the most unpleasant aspect of being in the hospital with Crohn’s Disease.  I was praying my Surgeon wasn’t going this route.  Besides the NG Tube being inserted without anesthesia, when it is inserted properly you feel like a horse being led around by a rope.  It is horrific and if that were to be the next move it would have devastated me.

Later that evening, I began Projectile Vomiting again, this time while I was falling asleep after a brutal day.  I was running out of clothes as I never anticipated a hospital stay this long and the clothes I brought were soiled with various bodily substances.  I felt disgusting but, then again, when you are in the hospital you are not prepared for a sexual encounter.  You are there to get better and sometimes you need to take 3 steps back before you can take 1 step forward. But thinking about Sex sure did help me cope with some of these situations.

Tuesday, June 19th – Day 9

They sent me down for an X-ray just to make sure everything was okay and that it was in fact my body simply taking it’s time.  Thankfully, all seemed fine.  Later in the day my IV had again run its course and I had to be stuck again.  My physical and mental nerves were getting brittle because each nurse who tried to stick me would try 3 times and then hand me off to a more experienced nurse.  I repeatedly asked the nurse why I had to be subjected to this 3-try rule and she just answered with the company line that a “stick” wasn’t classified as “difficult” unless a nurse had tried 3 times and had failed.  But this time I respectfully rejected every nurse on the floor after one very nice nurse who specialized in “difficult sticks” had tried 3 times. My rejection forced them to get the “Educator” who was apparently the man who taught everyone in the hospital how to start IVs, especially on difficult to stick patients.  I forgot his name but he was in and out of my room in less than 3 minutes and painlessly started a perfect IV.  I was very thankful but also perplexed at the difference in quality between the Teacher and the Students.  I suspect it has something to do with hospital budgetary constraints because there is no special IV Team in the hospital.  Still, IV sticks are the most fundamental connection to hospital patients and one would assume hospitals would pay more attention to it since it is the most personal interaction a hospital medical professional has with patients.

Wednesday, June 20th – Day 10

Early in the morning I called my Mom and told her: “The Eagle has landed” which is my way of telling her that I finally had a substantial Bowel Movement.  It left no doubt that I was now “open” so I felt good that things were moving along and that I would soon be out of the hospital.  Not to get too graphic here but suffice it to say that the reason why I was in such severe pain for days was that the size of this bowel movement was humongous and as it moved through my bowels it caused severe pain since it was moving into areas of my bowel which had been asleep since surgery.  In any event, they moved me up to a Soft Diet once again after going back and forth between Clear Liquids and Soft Duet depending upon the nature of my bodily functions.  Now it was a “Wait and See” attitude as the hospital staff had to monitor what went in my body and what came out.  If things came out without incidence, I would be able to rip this joint.  Notwithstanding the forgoing, my abdomen was still seriously distended so perhaps the Eagle Landed but it took off soon after landing.

At lunchtime, my college roommate, who is always Aces whenever I am hospitalized despite having a lovely wife and three of the cutest kids on the planet earth who want to be with him 24/7, brought me a tuna salad sandwich because the hospital food looked like they got it at Aqueduct Raceway.  He also had a Starbucks coffee with him.  I asked him if I could take 3 sips of the coffee since coffee has always been my morning “starter.” Everything was fine for a few minutes as we talked sports and about his 8 year old’s latest sports prowess but then it happened.  I was sitting in bed and I felt a “white heat” take over my body.  We know each other a long time so thankfully we speak in shorthand and I quickly motioned to him to please hand me the sanitized bucket at the side of my bed.  He got it just in time and then my mouth unloaded on this poor plastic bucket.  When there was no more left to vomit, my stomach and throat still went through intense gyrations. I felt horrible that he had to see me at this most vulnerable of states but sometimes even the closest of friends need to see first-hand what each is up against.  His face was white.  He couldn’t believe the ferocity of the ups and downs I had to deal with.  I felt possessed and must have looked like some creature from a horror movie.  After getting passed the physical part, I began to think of 2010 and I started to get depressed as it seemed I would never “open up” and that I would keep vomiting for the foreseeable future.

My doctors understandably switched me back to clear liquids as it was apparent my body was still not open for business despite my bowl movement.  Thankfully my surgeon understood that these factors belonged to my particular case and I was the case he was treating. Some other surgeons would have placed the responsibility on me as if it was my fault that my body opened and closed like Pain Clinics in South Florida so it was comforting that the doctor calling the shots was on my side – as opposed to 2010 when the surgeon was pissed at me for skewing his statistical post-operation numbers.  Hey, sometimes you gotta look for the small optimistic things otherwise the hospital will win and you will go crazy.

Thursday, June 21th – Day 11

As if I wasn’t stressed enough, I could hear my roommate in the bathroom making those pre-bowel movement sounds which precede normalcy.  Then, after he convinced the doctors that he was on the mend, he was discharged.  I then had my own room for no more than 2 hours when a contingency of loud foreigners checked it.  It seemed the patient was an older man who was admitted for a colonoscopy the next day but because he had some issues properly preparing himself for the test, the hospital admitted him the night before and put a portable toilet next to his bed.  At that point, I used my patient curtains to stay insulated as he was approximately 85 years of age and also deaf so his loved ones had to almost scream to communicate with him.  But later in the day when he had to drink the colonoscopy prep solutions, my annoyance turned 3-dimensional as he began arguing about having to drink the prep all the while defecating into this portable toilet non-stop so the curtain between us did nothing to curtail that all too familiar colonoscopy prep smell.  On the positive, at least he didn’t have to use the Patient bathroom.

There was nowhere to hide so I had to try and isolate myself with my podcasts and audiobooks so that his 24-hour presence would be over before I knew it.  But since he didn’t want to drink the required amount of colonoscopy prep solutions, his doctor had to come into the room and quiz him about the color and smell of his diarrhea.  He challenged his doctor in some foreign language saying something to the effect of: “I shit.  It is good enough.  In Russia, doctors do colonoscopy without preparation so you should be lucky I’m even trying to crap for you.”  Lucky for him, only I was able to translate his imaginary language and the doctor kept smiling and trying to motivate him to keep on crapping because the clearer his diarrhea was, the better the colonoscopy would be as a diagnostic tool.  Roommates.

Friday, June 22th – Day 12

Throughout the craziness of the mad Colonoscopy Crapper, who I refer to as Frans Klamer, I somehow managed to have another Bowel Movement so I began to feel that my days at the hospital were numbered.  That is, until later in the day when I was lying down in my spacious hospital bed and in my sleep began yet again to Projectile Vomit on myself.  Note:  When you are in the hospital you must alter your Dignity barometer a bit because bodily functions are signs of progress or problems. They don’t, however, make for a long-lasting wardrobe.  To that end, how many times do you see clothes advertised by their ability to withstand Projectile Vomiting and the occasional “Shart” or soiling of the undergarments?   This episode of Vomiting left me with SEVERE heartburn from my breast bone to my throat and I also felt like I needed to continue vomiting.  This made it very difficult to rest because if my head slipped below a certain level, I would get nauseous and have to barf.  “Would this ever end?” I said to myself.

The doctors decided to perform a CT Scan to get a better picture of what was going on inside my gut.  A significant hurdle was that I am allergic to IV CT Scan “Contrast” so I had to be pre-loaded with mega-doses of Prednisone.  They also preferred to perform the test on Saturday when more staff would be there in case I had another near-fatal reaction to the IV Contrast.  Then, at approximately 7 PM there was a nursing shift change and I was assigned a nurse I had never had before.  He was as impersonal as a sex doll.  When I told him I was nauseous he just spouted off the next time I could have anti-nausea medication which was something like 4 hours which seemed like an eternity.  Whereas, a nurse with a heart would have responded, “Let me see what I can get you to make you feel better.”  Unfortunately, at least the 1st time you get a nurse like this, you must weather the storm but remember his or her name so that you can tell the “Charge Nurse” that you never want to have that nurse again.  Usually the Charge Nurse will cater to your request because nurses and patients are people too and sometimes there are personality conflicts that are better handled by simply pairing up a patient with a different nurse. Anyway, when I told this compassion-less nurse that I had severe heartburn and was not only in serious distress but I was nervous having to drink the CT Scan Contrast the next day, he couldn’t care less which surprised me because almost every other nurse on the floor had been EXCELLENT.

Given the apparent apathy of my nurse, I was afraid to go to sleep for fear of vomiting on myself but the events of the past few days got the better of me and I succumbed to what should have been a relaxing respite.  Instead, I woke up yet again Projectile Vomiting on myself.  At this same time I had also received a new roommate who appeared to be an Insurance Salesman who was in for a bleeding ulcer which had been repaired years ago but all of sudden recurred. He tried to be friendly through the curtain but I couldn’t raise my voice to normal talking levels for fear of hurling all over myself.  When I did vomit, my credibility with the insurance salesman was intact and truth be told, my vomiting wound up not being such a big deal because I did have a lot remaining from my earlier bout with the upchucks such that after I barfed the pressure in my chest and bowels felt significantly better.  This made me feel better mentally as well because I did not want to need my new nurse overnight unless it involved me throwing up on him.

Saturday, June 23th – Day 13

Prior to going down to the Radiology Department, I had to drink a rather voluminous bottle of Radiographic Contrast.  With my heartburn better but still not normal and me regurgitating everything I tried to eat or drink, I was very worried about ingesting the entire bottle of Contrast but they required me to do so to obtain the best CT study. Sometime before being rolled down to Radiology, I went to the Hospital Gift Shop and bought Tums because I had been dreaming of them to soothe my heartburn.  All that nurse had to do was give me one to ease my pain but because he didn’t see it as being ordered on my computer profile, he refused to do so. He kept saying he was going to call my doctor about the Tums but it was the weekend and every doctor he asked would have no idea who I was.  At least now I was prepared in case this CT Contrast exacerbated the heartburn. Coincidentally, my long-term Gastroenterologist had told me on Friday that often the Contrast for these CT Scans had a way of “opening up” my body.  It was as if the CT Scan was both diagnostic and therapeutic.  I just didn’t know that he meant the Contrast would cause painfully wicked and unrelenting diarrhea.  With that in mind, I drank the entire CT Contrast bottle despite a few gags of utter nausea because I hoped it would push through the abdominal distension and serve as the impetus I needed to get my body acting normally again.

The test went fine but a few hours later I began to vomit up some Contrast while at the same time soil my underwear with uncontrollable diarrhea.  I can handle a lot but this situation almost brought me to the breaking point.  I had no more clothes left and when I tried to go to sleep I wasn’t sure which end of my body would be in action.  Thankfully, the vomiting seemed to stop but the CT Contrast was giving me non-stop diarrhea which had me racing to the bathroom at least 20 times on Saturday and Saturday night.  This was another time I did not want visitors because I felt so incredibly vulnerable but I knew that at any moment a close friend or relative could walk right through my curtain. I yearned for visitors because I was as lonely as the lone survivor on a downed Airplane in the desert but my rear end was so sore from these trips to the bathroom that combined with the intense gas pains slowly moving down my bowels, I just wanted to crawl up in my disgusting hospital bed, at least until nature called again.

I mentioned gas pains above because in any bowel surgery the recovery also involves tiny gas bubbles moving through your bowels very much like they would in a baby who has eaten his first food.  The problem is that no painkiller can treat this pain so the patient has to bear it sans any artificial assistance.  It sounds rather innocuous but it has been my experience that these unpredictable gas pains cause more pain than anything else.  It abates once your bowels start moving but until then you feel every gas bubble like you are being stabbed in the gut.  For whatever reason, the gas pain was intolerable on this day probably because the CT Contrast had caused diarrhea and things were finally beginning to move through the abdominal distension.  I tried to cling to this progress each time I clinched my teeth but before I knew it I was back in the bathroom with violent diarrhea.  Strangely, it appeared as if my rear end was now “throwing up” just as I had been vomiting from my mouth.  These are the things you think of when you are a hospital patient far too long.

At the 7:00 PM Nurse’s Shift Change, I once again was assigned the nurse from Friday night.  Before even greeting me hello, he told me that all of my pain medications had “expired.”  He said it like it gave him pleasure and I wanted to smack him silly.  I had never heard of this but it scared me terribly as I always want to know when doctors change my “Orders” and no-one warned me about any expiration on the mix of pain medications which weren’t ideal but they gave me just enough relief to not fear bouts of intense pain.  Maybe it is psychological, but I need to know what medications are at my disposal because I don’t trust anyone in the hospital.  No offense to the many FANTASTIC Nurses at Mt. Sinai Hospital but for such a long hospital stay I needed some control over my treatment. The fact that it was a weekend made it beyond difficult to get to the bottom of this because weekends at a hospital are, for the most part, staffed by the most junior doctors and I was a senior patient with more medical and hospital experience than almost all of the Residents, Interns and Nurse Practitioners.

The first thing I did was respectfully make a big stink over this nurse who I also had problems with the night before.  The Charge Nurse came into my room and immediately changed my nurse to a very nice and courteous nurse who I had dealt with before.  At the same time, an Aunt and Uncle of mine called to tell me they would be in the city and wanted to know if it was alright if they stopped by.  They were a godsend because by me it would have been impossible to have the pain medications reinstated but with an Advocate acting on my behalf, it was much more likely.  Long story short, after numerous phone calls by my Aunt and Uncle to my Pain Management Doctor along with the assistance of my new nurse, he admitted he made a mistake by putting an expiration date on the medications and told them he would speak to the Nurse Practitioner (“NP”) in charge and straighten everything out.  While that was progress, I knew he’d never speak to the NP and even if he did, the NP would be too nervous to reinstate the narcotic medications as it’s been my experience that NPs are often unsure of their authority.  My Aunt and Uncle agreed and at 11:00 PM, after calling my Pain Management Doctor who was on call, they finally received a return call and he said he would call the Nurse’s Station directly and make sure the Reinstatement Order was put into place.  It was, and I had a peaceful night once the diarrhea subsided and my rear end stopped feeling like it was on fire.

I mention this story with my Aunt and Uncle because, as a Hospital Patient, nobody in authority typically listens to you.  It is worse on the weekends and then when a doctor has to make more than one phone call to fix things, he or she invariably never does (especially on a weekend) so you have to be on top of them as if they are 1st-time waiters at a diner.  It is disgusting the way they treat patients on the weekends especially when there are signs all over the patient room indicating that “Patient Satisfaction is Our Goal.”  I believe the hospital’s intentions but I don’t trust the various medical professionals to do anything about it on a weekend.  Nurses are your best advocates but all they can do is contact the right people.  After that, it takes a focused individualized argument to change the status-quo.  Nurses are usually way too busy for that.  Thankfully, my Aunt and Uncle accomplished that for me on Saturday night.

Sunday, June 24th – Day 14

The results for the CT Scan came in and during Sunday Morning Rounds the Infectious Disease Doctor told me that I had some fluid buildup and my white blood cell count was high indicating I was fighting off some infection.  He chose two (2) antibiotics and I wrote them down just to ensure that there were no miscommunications.  With this progress, I began to see daylight to getting out of the hospital and nothing was going to upset that.  I encourage all patients to be as engaged with your hospital care assuming your condition warrants it because mistakes do happen in hospitals.  I had also brought various medications into the hospital to try and save some money.  When doing this, PLEASE tell your Nurse so that he or she can label them as (temporary) property of the hospital.  There’s no way around surrendering your independence to your Nurse in the hospital.  The sooner you accept that, life inside the hospital will get a little easier.

The rest of Sunday was fairly quiet since the abdominal distension had significantly abated due to my non-stop diarrhea and I was able to hold down the small amounts of soft-food I had eaten.  Apparently, my longtime Gastroenterologist was right in that the CT Scan proved to be therapeutic to my problem of not “opening up” after the surgery.

With my room all to myself I finally began to rest without fear that I would soil myself, my underwear or my bed.  But then I got a new roommate and this one was from the Midwest who had some growth drained from his lower parts but he was a Smoker.  He was a very nice guy and we had a great deal in common but a few hours after he was in the room I began to smell Nicotine.  I let it go since smelling that was much better than the smells of Franz Klammer prepping for his colonoscopy but it sure was strange.

Monday, June 25th – Day 15

The weekend had ended and the real doctors were back in town.  They were all impressed that my abdominal distension had gone down but because of my elevated white-blood cell count and non-stop diarrhea, they had to test me for the most aggressive infection known to those parts of the body called C-diff.  I had C-diff several years ago and it made my 20 or so runs to the bathroom look like an Opening Act.  It is often caught in the hospital so it would make sense I had it given how long I had been in the hospital.  In order to test for it, the nurses needed a specimen of a bowel movement which was basically all liquid at that point.  It was disgusting having to provide them with this sample but just like I said previously, your sense of dignity takes on a different meaning after being in the hospital so long and you do what you must to get out of Dodge.  Thankfully, however, I tested negative for C-diff and my symptoms were simply due to my body reacting badly to the Cat Scan Contrast.

Towards midday after chatting with my new Midwest roommate for a few hours, I smelled Nicotine as if he had been smoking in the bathroom.  To each his own but I knew that smoking in a hospital is VERY dangerous due to the amount of pure oxygen being used.  I never saw him smoke but within a few minutes the Security Guard came into our room and quizzed both of us about smoking in the room.  His investigation was inconclusive as I couldn’t say it was my roommate but once the Security Guard left I told my roommate that I don’t want to know if it was him but in the future please don’t smoke anywhere inside the hospital for the safety of other patients.  He agreed and the issue was put to bed.  We then went on to continue our conversation through the curtain.  He was a very interesting guy, we had a lot in common and I hope we stay in touch.

Tuesday, June 26th – Day 16

My surgeon was very pleased with my progress but yielded to me in terms of when I was ready to go home.  With all the ups and downs of my hospital visit, I told him I thought it was prudent to feed me three meals and watch me overnight.  If there was no funky activity, I should leave the hospital Wednesday morning.  He agreed.  The fact that my white blood cell count was now back to normal also aided my cause.

My IV line was again due to be changed but there was no way I was being stuck again so I had the nurse simply pull it out and every medication I had to take from then on was by mouth.  The hospital food was atrocious but thanks to my friends I had a few tuna and turkey sandwiches to try as tests for my fixed intestines and everything seemed fine. I also lost the Midwest Smoker roommate and picked up an elderly widowed man who had some laparoscopic procedure done and was leaving the next day.  Unlike with the Smoker, I didn’t have much in common with this gentleman but he made me sad as he had lost his wife only a few years ago and had no-one to care for him when he went home.  I hope that is never me.  This is why the topic of Roommates in the hospital is tricky.  In some, we see ourselves.  In others, we see people we hope we never become.  And then there are those we know may not be around too long and you hope your life never comes down to a life and death conversation separated only by a curtain in a hospital where roommates change as frequently as employees of Donald Trump.

Wednesday, June 27th – Day 17

Just as in a Hotel, the signs on the wall of a typical Patient Room in a Hospital clearly state that upon Discharge you must be out of the room by 10:00 AM.  That’s what it said at Mt. Sinai Hospital and crazy me; I took them at their word.  In that regard, my college roommate changed his busy daily business schedule to pick me up and drive me home to New Jersey despite having to be at what were now several inconvenient different places at specific times.  I told my nurse that I was on a tight schedule because if I missed this ride home I’d have to take a Cab and that could cost me Hundreds of Dollars.  My nurse was GREAT and tried to help me but that Pain Management Doctor held everything up and then when he came he forgot to prescribe a medication I’ve been taking for 3 years.  I had a few left at home but his office said he was in the hospital and my nurse simply had to page him.  Turns out he has no Pager Number so I went round and round with phone calls to and from the Pain Management Office while my diligent nurse tried to help me.  After a while of these futile attempts, I realized I could make do with the few pills at home so I decided to leave the hospital and simply call his office on Thursday to fix the error.  It was now 12:00 noon and my friend was getting nervous because he had an important business meeting in Westchester at 4:30 PM and I was possibly compromising it.  Even though I was up at 6:30 AM and emphasized during Doctor Morning Rounds how I needed to leave by 12:00 noon AT THE LATEST, there were still many Discharge Forms to complete and Drugs to pick up at a Pharmacy outside the hospital.

Having given up on my Pain Management Doctor, I thought I was home free with the Discharge Papers but my nurse informed me that the “Surgical Team” had not yet discharged me.  This was preposterous to me as the “Surgical Team” was all Interns and Residents and all they did was the grunt work of my surgeon who could not have been nicer or more understanding of my problem when he saw me during Morning Rounds.  Therefore, I had to wait until these “students” got to discharging patients even though the signs in the Patient Room clearly said 10:00 AM was check out time.  It was just another example of the “cluster-fuck” that is a Hospital and I politely asked my nurse to contact them and ask them to put a RUSH on my Discharge Papers because otherwise it was going to cost me a great deal of money and I’d been through enough already.  That verbiage must have made a difference because within 5 minutes my nurse had me sign the various Discharge Papers and she gave me my various Prescriptions to fill and sat patiently and went over all my limitations and whatnot.  I left the Hospital at 1:30 PM or so and my friend was as nice as could be even though I had screwed up his entire day.  It’s not fun having Crohn’s Disease but I am blessed having a few amazing friends who truly understand the foregoing chaos I go through each time I am hospitalized.

 © Copyright 2012 Michael A. Weiss

eBook – “Confessions of a Professional Hospital Patient”

Personal Candor of my Medical Book makes it Funny & more Interesting

Up until only a few years ago, when people began using “Health Care Social Media” (“HCSM”) to help one another with their shared medical maladies, people weren’t publicly “Candid” about their medical conditions for fear of obvious or subtle retribution by their employers or because of insecurities regarding the possible or probable perceptions of their significant Other. Thankfully, the “anonymous intimacy” of Virtual Patient Communities & Social Health Networks, like Crohnology.com, and other patient-preferred HCSM “platforms” has changed that to the point where patients often reveal more important medical details online than they do in the sterile and confidential confines of a Doctor’s office. This seems counter-intuitive but being a patient myself I can attest to this phenomenon.  I suspect it is due to the more relaxed “environment” of chatting online while sipping a relaxing glass of wine in comfortable clothes as opposed to coming in from the cold and immediately having to get naked and then change into Patient Gowns, the design of which hasn’t changed since Thomas Jefferson had his first prostate exam.

By the same token, there have been many Healthcare Books written which detail how to Cope with, or Manage, Chronic Illness, but few of them are based on 100% “Real,” “personal” or Candid interactions for these very same, understandable, retribution and insecurity reasons.  However, I never bought into these fears because when you have a chronic illness it does not define you; it merely becomes another of your character traits, just like being funny, attractive or hard-working.  Therefore, I decided in 2001 to write about the Real account of my trials and tribulations with Crohn’s Disease so that others with a similarly debilitating and painful Chronic Illness could relate to my struggles, both in and out of the hospital.  I also thought that a book intending to be helpful to others about these types of particularly dull and niche subject matters should exhibit “personality” and be funny and inspiring so that readers are more likely to remember how, for example, I handled things, both successfully and unsuccessfully.  Then readers are more likely to truly learn from my experiences.  This was the impetus for me writing the book, “Confessions of a Professional Hospital Patient,” which was released in eBook format only a few days ago.  The eBook Selling Price is $3.47.  (The eBook has also been configured to work with Barnes & Noble’s “Nook” device.)

Authenticity is the Ultimate Teaching Tool

Last week, when the “Confessions of a Professional Hospital Patient” eBook came out, I was trying to figure out what has made the Book so interesting and entertaining to others and an “evergreen” seller since 2001.  Well, the other night, while participating in a mental health social media TweetChat, I commented that good Blogs are written by people who make entries that are thought-inspired as opposed to obligatory in nature.  For example, people who feel they must blog everyday will eventually lose readers because I think we find Blogs interesting due to how the bloggers describe their handling of anger, frustration, anxiety, fear and other emotions which we all experience.  As a result, while Blog entries motivated by these types of common emotions may not be published every day or even every few days, when they are published, their “authenticity” produces interesting content.

During this TweetChat, when I was concentrating on reading and writing about the Mental Health Topics introduced by the Moderator, I realized that I didn’t hold anything back in “Confessions of a Professional Hospital Patient” because “authenticity” is what I was aiming for since I wanted people to have no doubts as to my veracity so they could relax and absorb the material.  It’s like when I taught a class on “Negotiating in the Entertainment Industry” to a group of night students already working in the entertainment industry who were also enrolled in this special “Media MBA Program” partially funded by their respective employers.  The first night of class I told the 50 or so students that unless I felt the following rather generous grade policy was being abused, everyone would be getting a semester grade no less than “B” because my goal was to TEACH them about “Negotiating in the Entertainment Industry” and I thought the most effective way to do that was by having them not worry about grades so they could simply sit back, listen and LEARN.   Without realizing it at the time, I think I used the same approach in my Book and it seems to have worked.

Mainstream Reviewers – “laugh out loud funny” & “wonderfully inspiring”

When “Confessions of a Professional Hospital Patient” first came out in July, 2001, I was shocked at how well it was received by the mainstream Press since it was about the niche and seemingly “dry” subject matters of Crohn’s Disease and Chronic Illness.  But readers/reviewers of the Book consistently commented that it was “laugh out loud funny” and “wonderfully inspiring.”  That made me feel fantastic because if THEY liked it, I knew my fellow “Crohnies” and Chronic Illness comrades would learn a great deal from my experiences.  In that regard, I have received from these chronically ill folks (and from their families) at least one communication a week since 2001 thanking me for helping them, inspiring them or in many cases, for changing their lives.  To continue to receive notices like that is an honor I can’t even describe other than to say they make having written the Book an incredibly rewarding experience, of which I will always be proud.

As these mainstream reviews were published, I somehow got on NBC’s “Today Show” and my Book was seriously “taking off.”  Publishing public relations agencies then began calling me me about how they could get me on television shows like “Oprah” and “Larry King Live.” I eventually gave in to one of them so I could at least seek those rather lofty and once-in-a-lifetime goals.  Long story short, the first thing I did was what they called a “Radio Satellite Tour” during which I gave phone interviews about the Book to the leading morning drive-time radio shows in key cities across the United States.  We started in the East Coast at 7:00 AM EST and I sat by my phone until 1:00 PM EST as we gradually worked our way across the country to morning drive-time radio stations in California.  Some radio interviews were also taped for broadcast later that week.  However, it didn’t much matter in the end as the radio interviews all took place on Monday, September 10, 2001, one day before the world changed and “Confessions of a Professional Hospital Patient” would become the least of anyone’s pressing morning radio topics to discuss.  All in all, it was a rather humbling experience to go from possibly appearing on “Oprah” and CNN’s “Larry King” to returning to being a full-time Entertainment Attorney, in the span of 24 hours.  While I was initially disappointed in the opportunities I lost, I quickly “turned the page” (pardon the pun) and focused on nothing but the people who tragically perished in the events of 9/11 and the brave men and women in the Armed Forces who would be risking their lives to defend my freedoms for years to come.

“Your Mom CAN’T read my Book – it’s too Personal!!!”

A funny recollection I have of marketing the Book and appearing on a variety of National and Regional Network and Cable Television Shows had to do with my girlfriend at the time.  I hadn’t yet met her Mom but meant to as soon as I had a free moment.  That gives me the creeps just writing such an arrogant excuse but I had made plans to meet her Mom several times but unfortunately had to cancel them as I never expected my Book to get the amount of widespread Press Coverage it received and I had to take advantage of it.  Thankfully, my girlfriend was very understanding and supportive but she was also very excited for us to meet.  In fact, she was so enthusiastic about it that she had her Mom purchase my Book in advance of our 1st scheduled dinner meeting.  She also told me this as we drove to her Mom’s house and I got so embarrassed because all I could think about was her Mom knowing all about my battles with Chronic Illness and Crohn’s Disease. Worse, she would learn about all my embarrassing personal details revealed in the Book.  I was squirming in my car just thinking about what would be going on in her Mom’s mind as she met me and probably scrutinized my suitability for her beautiful daughter.  As we got closer, my girlfriend just laughed and said something to the effect of: “It’s so funny that you are paranoid about what MY Mom will think after reading your Book when you’ve already discussed the most intimate details of your life on the “Today Show,” MSNBC and radio stations all across the country.”

I’ve learned over the years that my then-girlfriend’s point that day in my car about her Mom is a major attraction of “Confessions of a Professional Hospital Patient” as it’s really a true and authentic depiction of my life and my funny, sad, poignant, embarrassing, inspiring and frustrating battles with Crohn’s Disease and Chronic Illness.  Damn the torpedoes!

Click here to purchase Paperback - “Confessions of a Professional Hospital Patient”

Click here to purchase eBook - “Confessions of a Professional Hospital Patient”

Health Care Social Media (“hcsm”) – Its Potential & Power

The cool thing about the Web, Mobile Stratosphere and Social Media is that no-one owns them and no one ever will. Health Care Social Media, or “#hcsm,” as it is known on Twitter, combines the different Healthcare Social Media Web/Mobile “platforms” and devices such as Twitter, Facebook, Portal Websites, Blogging, Applications, YouTube Videos, Podcasts, Smartphones and Webinars with often instantaneous global connectivity and growing virtual communities made possible by the Web and Mobile technological environments. The constant emergence of new platforms and devices and an increase in the global use of these technological environments for healthcare purposes makes the potential of hcsm limitless. Moreover, hcsm will always be defined, refined and influenced by the patients, healthcare professionals, medical school students, teachers, executives and attorneys who use it. In that way, hcsm will forever remain an ever-changing medium of valuable virtual communities, different usages and individual expression. This makes hcsm both an effective Tool and an invaluable Resource for the diverse healthcare industry end-user. But much like pre-Game Batting Practice in Major League Baseball, hcsm end-users have different needs and go about servicing them in different ways.

Some Major League baseball players use pre-Game Batting Practice to show off their strength trying to hit every pitch into the home run bleacher seats just as some in Healthcare use hcsm to simply market their wares damn whatever self-promotion complaints they are berated by. But other ballplayers have great reverence for Batting Practice and treat it as an opportunity to simulate In-Game Live At-Bats and/or Live Situational Hitting. This latter usage of Batting Practice by ballplayers, by analogy, is how many experienced patients and Web-savvy health care professionals value hcsm. They see it as a way to share (or gain) knowledge and experience with (from) others.

However, even within that seemingly wide spectrum of hcsm end-users, there is a divergence of underlying rationales regarding the value, potential and power of hcsm. In fact, some factions within the healthcare industry seem to act proprietary over hcsm or even privileged towards it, yet, as stated above, no one owns it.   This Blog Post, written by a chronic patient, addresses the unlimited potential of hcsm and theorizes that these differences in the perception of hcsm are caused by both generational factors and a new interpretation of the fast-evolving Doctor-Patient Relationship. If these differences can be replaced by a more collaborative spirit, hcsm can be a Game-Changer in Healthcare Reform.

The “hcsm” TweetChat – the Best “60 Minutes” on Sunday night

It starts out at 9:00 PM EST like any other TweetChat with people calmly introducing themselves and also explaining their healthcare industry interests; both, in fewer than 140 characters. It is fascinating to see doctors of almost every discipline, patients with various experience and differing attitudes, nurses, pharmacists, hospital administrators, drug company executives, health attorneys, medical school students and the like from all over the country eager to participate in this democratized “Conference” of sorts. Then, as the introductions speed up in anticipation of the professionally prepared Moderator introducing Topic 1 (of 3), you realize the TweetChat is actually comprised of medical professionals and hobbyists from all over the world.

There are definitely “Regulars” like myself who somehow manage nearly each and every Sunday Night to block out reality and step into this virtual world of such distinguished, passionate and dedicated folks but there are also “Lurkers” who simply watch and learn. What are they watching? They are observing some very smart and wise people who care deeply about the current and future state of healthcare trying to type as fast as possible to populate the #hcsm Twitter Feed with their insightful nuggets of information and experience so that their contributions are duly noted, possibly re-tweeted and hopefully expanded upon. At the same time, we are all genuinely interested in what our colleagues from a few continents away are writing about as they start their tomorrow or are just ending their work day.  Therein lay the physical and mental challenges posed by what I like to refer to as the best “60 Minutes” on Sunday night.

Regardless of the night’s discourse, I am always amazed at the ever-increasing amount and diversity of people who attend each and every week. I mean, Sunday night at 9:00 PM EST is usually reserved for the beginning of the upcoming work week’s “Sunday Night Blues.” Instead, it now marks the start time for this “Think Tank” of renowned healthcare industry brethren playing this game of “type, read or re-tweet.” There’s no tangible benefit to participating in the #hcsm TweetChat. It’s just pure mental stimulation for the purposes of someday soon making a difference in an industry or in just one (1) patient’s life.  It’s a humbling experience seeing virtual relationships being formed all over the world over mere thoughts and expressions. You don’t know where it’s going, and you don’t know what each night’s Topics will be, but you know you don’t want to be late and miss anything.

Talking ‘bout my Generation

I always try to represent a strong patient voice during the #hcsm TweetChat and it always strikes me how the younger folks (I’m 49 years of age) are so eager to look at things from a patient-centric and technology-driven perspective yet, in my reality, as a 30-year chronic patient, these great intentions are almost always over-ridden by the problem at hand. In that sense, we tend to regularly get into an intellectual debate about the role of education in the Practice of Medicine and I always state that I don’t want to be educated by my doctor; I just want to be treated. Many TweetChat members mistake my ostensibly short-sighted position as me not wanting to know what is going on with my health when I converse with my doctor but that’s not the case. I blame this misunderstanding on the 140 character limitation of Twitter and how it makes me lean on assumptions probably too much because I assume it’s a given that everyone wants to know what’s wrong with them. I just don’t want to place more job responsibilities on my physician whose plate is already full due to the intensive administrative paperwork necessary to merely seek financial Reimbursement from my Health Insurance Company. Besides, if many physicians also possess teaching skills, their bedside manners would be substantially enhanced and as a patient I’d rather see those teaching skills utilized that way instead of for the purposes of enlightening me about the origins of prostate cancer.

Also, the younger generations of #hcsm TweetChat participants tend to place an emphasis on Medical Practices making it a priority to not only have a Social Media Policy but to also consistently “publish” Content on their websites or on other hcsm platforms to help educate their patient populations. As a patient always appreciative of such efforts (and I applaud these aspirations), I nevertheless am against holding my physician ALSO accountable to various Publishing Standards. Sure, they could hire someone to create these materials, and many do. But I’d prefer these extra staff focus on patient pharmaceutical financial assistance or disability programs if the medical practice treats patients who are chronically ill and often become disabled and financially strapped because of their medical costs. As for the establishment of a Social Media Policy, I am convinced this will be necessary in the very near future but I seem to constantly have experiences with top-notch physicians who nevertheless have problems with their Telephone Call-Back Policy! Again, I applaud the idea and intention but in reality, and at this place in time, I’d prefer to see all resources used to enhance patient care.

I think it is a generational issue and I commend the younger folks for starting out with such patient-centric plans, but I want my health care professionals to simply treat me. I don’t want to learn how my situation stacks up against that of other patients and I don’t want my doctor taking time out of being on the “cutting edge of treatment” to publish a rather innocuous article, for example, about the symptoms of Crohn’s Disease which, given the professional, ethical and legal limitations he or she is up against, turns out to be no more than a marketing piece, despite the best of intentions to help patients. Maybe my simplistic perspective is due to the nuanced-filled complications of my chronic illness (i.e., Crohn’s Disease), but my doctors always seem so busy with one emergency after another that I just don’t understand when they would have the time to act as educator and publisher on top of being a doctor, which these days means more staff, more administrative work and higher malpractice premiums, all for less money than doctors typically made Ten (10) years ago. Let’s face it, these days, it’s tough being a Patient or a Doctor.

The Evolving Physician-Patient Relationship

I think the different perceptions of hcsm which indicate its more limited usage and potential are still held by intelligent, informed and dedicated healthcare professionals but these folks don’t account for the fast-changing Physician-Patient Relationship which is evolving every second, of every day, of every year, thanks to Social Media and to the Web/Mobile technological environments. Sure, mutual respect is still a mainstay in that relationship but mutual trust implies a familiarly between the two parties and with economic decisions increasingly forcing patients to “work their health insurance plans” and choose In-Network physicians, that trust often doesn’t get enough time to develop because employers could conceivably change their policies annually as premiums are raised.  Thus, many Physician-Patient relationships only last as long as the policy makes financial sense for the employer. As a result, many employees are forced to change Internists or Gate-Keeper Physicians on an almost annual basis.

Alternatively, what I see more of in my experiences as a patient since the evolution of hcsm is “Collaboration” between Physician and Patient. This Collaboration seems to be a direct result of the opportunities for e-patients to learn more about their conditions and treatments via hcsm prior to their real life encounters with their doctors. This is making healthcare “transactions” more efficient and therefore more productive. Perhaps e-patients are more experienced because, like me, they must battle some type of chronic medical condition. That said, not all doctors are cut out to treat chronic patients as that necessitates an on-going relationship as opposed to the occasional “stop by” patient each time he or she has a problem. It’s not dissimilar to a man or woman more comfortable in casual relationships than in monogamy.

Similarly, patients must understand that someone touted as a great doctor might not be the right one for them, especially if they have a chronic illness. Likewise, doctors must now be more careful in picking their patients because the needs of a chronic patient are much different than those of a normal patient with occasional medical problems. Accordingly, once a healthcare end-user accepts “Collaboration” as an integral part of the “new” Physician-Patient Relationship, the potential of hcsm comes more into focus since the basic and driving healthcare relationship is now more “democratic” than ever before.

Power of hcsm to help Reform Healthcare

In the beginning stages of hcsm, I read many stories about how patient-formed business ventures on the Web couldn’t possibly succeed without the inclusion of a medical professional as its focal point. I always laughed at that because people of this opinion never understood the uniquely useful value in a Virtual Patient Community such as Crohnology.com, which makes Crohn’s Disease patients feel comfortable enough to share and be candid about their experiences in an environment comprised of only similar patients. What medical professionals did not realize is that with the advent of hcsm many patients now feel more comfortable talking about their symptoms with other patients on a preferred hcsm platform as opposed to talking with a doctor in the sterile environment of a Medical Practice when the doctor must quickly assess the situation so he or she can move on to treat the next patient.

Strangely, the intimacy of the doctor’s office has in many instances been replaced by a virtual “room” of people with similar medical problems. Thankfully, some very smart medical professionals listened to their patients and picked up on this and the power of virtual organized patients is now recognized and the necessary inclusion of medical professionals in Web business ventures is no longer the prevailing business theory just as “Return on Investment” or “ROI” is being abandoned as the short term touchstone for success of hcsm business ventures. There’s just no precedence to rely upon to make any realistic ROI forecasts.

At its core, hcsm is no more than a grassroots movement which, due to its timing, has been powered by technology such that it is now an influential worldwide phenomenon.  In that regard, there are active hcsm affiliates in many countries throughout the world including, but not limited to, Australia, New Zealand, Asia, Austria, Canada, Europe, India, Latin America, Sweden, France, Ukraine and the United Kingdom.  With Social Media objectives that are no different than that of the Entertainment and Music industries, hcsm strives to make Healthcare more: personal; readily available; user-friendly; efficient; and profitable. In doing so, these virtual hcsm patient interactions are becoming more intimate and patients are noticing by becoming more comfortable and candid.

This combination of intimacy, candor and commonality amongst virtual patient communities will soon make real-life Healthcare “transactions” more efficient, more productive and less expensive. After all, a patient with more tried and tested medical knowledge makes for a smoother and faster customer and that enhances the quality of real-life Healthcare transactions. Participation in hcsm provides patients with this type of “seasoned” information and that will also make their exchanges with medical professionals more efficient.  The benefits of these time and quality patient efficiencies will eventually grant more people the opportunity to afford healthcare insurance to then obtain the medical treatment they need. This may seem like a rather attenuated connection but hcsm is quickly becoming relied upon by patients as one of their foundations when they seek medical treatment.  No-one ever thought people would trust the Web with their banking needs but now people from all walks of life are conducting secure banking transactions with their cell phones.  The benefits of technology are finally creeping into patient care and if banking is any barometer of its acceptance, hcsm will soon be a formal part of Patient Treatment Plans.

As hcsm becomes a part of everyday life and, like banking, there are television commercials praising its ease, even with a cell phone, the multifaceted interests of patients, doctors and hospitals will then merge because of hcsm.  This alignment of interests will form a formidable foe for the Health Insurers who, ironically, have no interest in efficiency and increased productivity for fear each would reveal the GROSS inefficiencies which have kept them “in power” for so long.  It’s no secret Health Insurers want to maintain the status-quo otherwise a Multi-Billion Dollar Industry would not be operated via handwritten doctor notes and medical records.  So hcsm, no matter how it’s used, will organically negate the Health Insurers’ oil cartel-like business practices and then regardless of one’s perception of the power of hcsm, it could be that Game-Changer we’ve all been waiting for in our pursuit of Healthcare Reform.

leave comment

You know you are a “Crohnie” when …..

As a moving homage to Redneck Comedian Jeff Foxworthy and to Crohn’s Disease patients around the world: “You know you are a Crohnie when….

You set the dinner table with a knife & fork but all you’re “eating” is “Ensure.”

All you own is Black underwear.

The glove compartment AND the trunk of your car has Imodium in it.

You are less embarrassed buying Enemas at the Pharmacy than Condoms.

You look forward to hospitalizations because there you can fart with impunity.

During the Holiday Season, people get you Gift Certificates to your favorite Pharmacy.

You must own an industrial strength “Snake” because no Plunger can free your Home Toilet of the occasional large “log.”

You are watching TV with your Mom and both of you have your own respective Air Freshener Sprays.

Said Air Freshener Sprays are BOTH aimed at YOU, ready to spray, “with the safety off.”

What is a Crohnie?

A Crohnie is a person with Crohn’s Disease.  However, given the similarities in the hassles, challenges, health insurance codes and the often excruciating pain associated with Ulcerative Colitis (“UC”), Irritable Bowel Syndrome (“IBS”), Colitis and the “catch-all” Inflammatory Bowel Disease (“IBD”), Crohnies view UCers, IBS, IBD and Colitis folks as much respected Brethren.  To the Crohnie, each is like a “Brother from another Mother” and therefore the term “Crohnie” includes them.

 What is Crohn’s Disease?

Crohn’s disease is a type of inflammatory bowel disease (i.e., the digestive tract) that affects approximately 700,000 Americans.  It is a broad spectrum disease such that different patients can have completely different experiences in terms of degree of pain, need for hospitalization, the foods which trigger flare-ups, effective medications or other treatments, etc.  For me, at the age of Forty-Eight (48), it has included Two Hundred Plus (200+) hospitalizations and approximately Fifteen (15) to Twenty (20) surgeries.  But for one of my close relatives similarly diagnosed, it has been no more than a minor inconvenience with no hospital visits and no surgeries.   If only my family had money and it was distributed so disproportionately….

It is an incurable auto-immune disease whose most successful treatments suppress patients’ immune systems and thus leaves them vulnerable to numerous other conditions.  It’s like going on a blind date and instantly realizing how un-attracted you are to your date but then you also discover he’s a selfish, ill-mannered ego maniac.  It is a Lose-Lose situation.  The auto-immune component often causes Crohn’s patients to have exponentially longer “healing times” in response to common infections and it can cause abnormally more intense, debilitating or merely longer-lasting responses to minor health issues such as seasonal allergies.  Accordingly, Prostatitis for me may last several weeks while my buddies simply take prescribed antibiotics and start urinating full-stream in no time.

Crohn’s disease can affect any area of the GI tract, i.e., from the mouth to the anus, and the swelling extends deep into the lining of the affected area.  This causes a “narrowing” of the necessary passageway for food, gas and stool. As a result, the swelling can cause severe pain and can make the intestines empty frequently, resulting in diarrhea; or not at all, when the body’s natural process of peristalsis forces downward “movement” inside the intestine and then severe child labor pain-like feelings can set in along with the risk of perforation of the intestine. This severe child labor-like pain and possible perforation of the intestine could be indicative of a life-threatening situation and then the Crohn’s disease patient must go to a hospital.

Because the symptoms of Crohn’s disease are similar to other intestinal disorders, such as IBS and UC, it can be difficult to diagnose.  Unlike UC and IBS, however, Crohn’s disease can involve all layers of the intestine, such that normal healthy bowel can be found between sections of diseased bowel.  These are sometimes referred to as “Skip Areas.” In addition to the fact that Crohn’s disease frequently recurs, and in some cases can also be quite aggressive, Skip Areas are one of the primary reasons why operating to remove diseased portions of bowel is very difficult, and unless presented with emergent circumstances, not a preferred option.  All that said, it makes you really appreciate a normal bowel movement.  Is that what they meant when they said, “Don’t forget to stop and smell the roses?”

Treatment for Crohn’s Disease

Treatment may include drugs, nutrition supplements, surgery, or a combination of these options. There is also a rise in the successful use of organic foods and homeopathic supplements to combat and/or decrease the number and frequency of Crohn’s flare-ups but these pioneering efforts have not been proven scientifically safe and effective and they tend to be extreme and difficult to implement within a normal lifestyle without actually living INSIDE of a Whole Foods Market.  In any event, the goals of treatment are to control inflammation, correct nutritional deficiencies, and relieve symptoms like severe abdominal pain, diarrhea and surgical complications, and to also treat side effects from the various forms of successful Crohn’s treatments.  So, the objective of successful Crohn’s disease Treatments is to treat the serious and frequently debilitating side effects of the fabulous aforementioned successful Crohn’s treatments.  Did Abbott and Costello invent Crohn’s disease?

A stark example of this Abbott and Costello effect of the different successful Crohn’s disease treatments is what I am presently living through in that my Crohn’s disease was successfully treated for a few years (i.e., I experienced very few flare-ups) with what is referred to as an Anti-TNF Agent Drug (namely, “Humira”) but then I started to develop recurrent Pneumonia and other respiratory problems which were so serious that they required several hospitalizations.  Eventually I underwent lung surgery for the doctors to obtain lung biopsies and then I was diagnosed with “Bronchiolitis Obliterans Organizing Pneumonia” (a/k/a “BOOP”), a rare and potentially lethal Lung Condition.  (When I first heard the diagnosis I thought they had me confused with a dinosaur character from “The Flintstones”!) The “textbook treatment” for BOOP was one (1) year of a very high daily dosage of Prednisone (i.e., 60 MGs) eventually tapered down appropriately over said year.  However, after three (3) months or so, and about 45 extra pounds and one almost psychotic disposition, it was clear my body did not respond as was hoped to the massive amounts of Prednisone so I underwent a form of Chemotherapy with the drug “Cytoxan.” After three (3) monthly infusions of Cytoxan, my lungs apparently significantly improved (although it is unclear if the BOOP will be chronic and therefore come back in the future) but now my Crohn’s disease seems to have been aggravated by the Chemotherapy.  To that end, I am seeking treatment for such severe abdominal pain that I cannot eat solid foods without the subsequent digestive process literally bringing me to my knees crying from the pain.  I live on Lollipops and Liquids.

Given the current state of Crohn’s disease research, treatment for it can help control the disease by lowering the number of times a person experiences a recurrence or flare-up, but there is no cure. Some people have long periods of remission, sometimes even years, when they are free of symptoms. However, the disease usually recurs at various times over a person’s lifetime and predicting when a remission may occur or when symptoms will return is not possible.

Sometimes this frustrating research reality sounds to me like someone was given a great deal of Research Grant Money and after an extensive three (3) year study, they concluded: “We think the Butler did it, but then again, it could be Colonel Mustard, in the Kitchen, with the Fireplace Poker. We need more time and then we’ll get back to you.”  In all seriousness, Crohn’s disease can impact a person in so many ways including physically, medically, mentally, emotionally, professionally, financially and socially.  I kid the Researchers but I sincerely appreciate their efforts and dedication and I pray for their success.

**Much of the above medical information regarding Crohn’s disease has been obtained from the National Digestive Diseases Information Clearinghouse. The sarcastic commentary is all mine.

You know you are a Crohnie when….

You bring your own pillow to the Hospital.

You experience euphoria at a rock concert after silently passing potent gas, estimating its invisible travel time into the different seating sections, and then merely by facial expressions, seeing a section of people affected, one by one.

You can discern between different Air Freshener Sprays to obtain the most powerful one.

You become an expert of the potency of the different brands and scents of Air Fresheners.

Your abdomen sometimes feels like you’ve been trapped underneath an earthquake-ravaged building and all of the weight is on your torso.

No matter how many times you tell people that you are not feeling well or that you are going through a Crohn’s flare-up they always respond, “But you look great!”

You run into an old friend while purchasing Stool Softeners or Laxatives and you attribute the purchase to your kind, harmless Mom because, after all, “she is getting on in her years and ….”

You tell someone you have “Crohn’s Disease” and they ask if it is contagious.

You tell someone you have “Crohn’s Disease” and they ask, “Is that ‘the Bathroom Disease?’”

You actually understand your Health Insurance policy.

Your mail is mostly comprised of Medical Bills, Explanation of Benefits (“EOBs”) forms from your Health Insurer and Dunning Notices regarding said Medical Bills.

You hand out Holiday Gifts to the Office Staffs of your various doctors for simply doing their jobs so you are in their good graces going forward.

You prefer certain flavors of Barium over others.

During a Flare-up, your joints, fingers and toes feel like Voodoo Dolls randomly pricked by a painful needle controlled by your main nemesis from high school or summer camp.

You sometimes get gas that’s so powerful it literally starts to lift your butt off the toilet bowl when you expel it.

You know to shave both arms for the intravenous lines before being admitted to the hospital.

You’ve taken Prednisone and have not been committed to a mental institution.

You’ve taken Prednisone and at one time or another have been told by friends or loved ones that you need to be committed to a mental institution.

Leave a Comment Button