In my 30 years with Crohn’s Disease, I am asked more about taking these “Biologic” drugs than any other aspect of the disease. I imagine that’s a good sign because it means the conversation is turning towards potentially successful treatments and possible remission BUT with these advancements comes risks in the form of potential extreme Side Effects. That said, I created this Video as an informative, realistic & positive account of the effects & efficacy of Remicade, Humira and Cimzia in treating Crohn’s Disease.

How the Video is Organized

The Video is organized as follows:

 1.       What are Biologics?

2.       The Science behind Biologics.

3.       What are the specific Biologic Drugs used for Crohn’s Disease?

4.       When are Biologics used to treat Crohn’s Disease?

5.       How are Biologics administered (and how quickly do they work)?

6.       What are the Side Effects of Biologics?

7.       Biologics Side Effects vs. Biologics Efficacy?

 My Current Plight with Biologics Side Effects

For those interested in my current plight with Side Effects from having taken Remicade, Humira and Cimzia (although I was on Humira the longest period of time), I developed a rare Lung Disorder which manifests itself as severe Shortness of Breath coupled with intermittent “Fever Attacks” of 105.  It first started in 2011 and then it was diagnosed as the rare lung disorder, “BOOP,” i.e., Bronchiolitis Obliterans Organizing Pneumonia.  The initial Treatment Plan was 60 mgs of Prednisone for ONE (1) YEAR but my body did not respond and I wound up having success with the Chemotherapy drug, Cytoxan. 

After a few months of Cytoxan in 2001, I thought I was done with BOOP but it appeared to return in early 2013.  However, despite having the same symptoms, a recent surgical lung biopsy revealed my lung tissue was “dying” but the Pathology Departments of several hospitals, including that of The Mayo Clinic, were stumped as to the reason.  Thankfully, I have a smart and proactive Pulmonologist who, in consultation with my longtime Crohn’s Disease Gastroenterologist, is starting me on Cytoxan while they prepare a submission of my Medical Case to the “National Jewish Health Center” in Denver, Colorado, as it is rated the top Respiratory Hospital in the United States.

 But am I truly suffering from Biologics Side Effects?

No medical professional will say for sure whether my lung problem is due to my experience with the Biologics in treating my Crohn’s Disease.  But logic and medical wisdom seem to be pointing in that direction.  After all, when experienced pathologists come across what they label as extensive “necrotizing granulomatous inflammation” in both lungs yet they cannot explain why, it would seem the latest rather potent Crohn’s Disease “miracle drugs” have something to do with my respiratory problems especially since it is respiratory problems which dominate the serious and numerous Humira Side Effects listed on the drug’s container box as required by several “FDA black box warnings.”

 Many Crohn’s Disease patients have no choice

My problems with Humira notwithstanding, I can’t ever forget that I took the drug when I was out of options and Biologics offered me HOPE.  I had exhausted all conventional drug treatments and the mere chance that Humira or Cimzia could get me back some quality of life made my decision to take Biologics a no-brainer.  For a few years it actually worked and with the exception of occasional severe joint pain, it would be fair to say my Crohn’s Disease was in Remission because of Humira and/or Cimzia.  But then routine bouts of Bronchitis turned into frequent hospitalizations and Pneumonia was right around the corner.  Even though various Social Media postings clued me into the connection between Biologics and Respiratory Problems such that I discontinued the Biologics, the cumulative amount of Biologics in my body must have been too much as a 2011 CT Scan of my lungs prompted a Thoracic Surgeon to warn me that I should be prepared for a diagnosis of Lung Cancer after he soon performed an emergency surgical biopsy of my lungs.  He even deemed it an “emergency” biopsy because he feared I might soon lose the ability to breathe on my own and that would make performing the biopsy much more complicated. 

 The price & reward of “Hope”

Perhaps HOPE came at too high a price for ME but that is not the case for MANY Crohn’s Disease patients who suffer NO SIDE EFFECTS.  In that regard, I wish them well when they are faced with this same decision and I am truly optimistic about future NEW Crohn’s drug treatments, Biologics or otherwise, because I think Researchers and Scientists have learned a great deal from patients like me who took Biologics.  To that end, if my struggles help even one child battling Crohn’s Disease who has exhausted the conventional drug treatments, then I submit this Blog Post with a HUGE SMILE.   

I have the honor of speaking next Wednesday, June 19, 2013, at “State of Now” (#140You) taking place at the 92nd Street Y in Manhattan. I am currently scheduled to speak at: 3:25 PM about: “How to become an Empowered Patient (like Angelina Jolie!!!) using Social Media.”  I have spoken about this “process” many times but Ms. Jolie’s recent remarkable example of becoming a Brave and Empowered Patient has me excited to share what I know with others so they can handle their medical affairs with the same efficacy and class as demonstrated TO THE WORLD by Ms. Jolie.

Since “they” say to “write about what you know,” I always use my Crohn’s Disease to help convey what is required in the journey to becoming an Empowered Patient.   It’s as if I was 20 years old again, just left the hospital with a diagnosis of Crohn’s Disease and then all of a sudden was placed on stage to publicly ponder what to do to become educated and prepared to do battle with a formidable adversary which would affect me the rest of my life in ways I could have never imagined.

While my personal stories liven up this PowerPoint Presentation I compiled from the hospital to the stage , I hope it helps you understand both the journey and the discipline of becoming an Empowered Patient.

This Blog Post is written by Guest Blogger, Molly Clarke

Please welcome Molly Clarke to the Professional Patient Perspective.  Molly writes for the Social Security Disability Help Blog and works to both promote disability awareness and assist people throughout the Social Security Disability application process. Their website offers a host of informational resources including an interactive disability forum, how-to’s, a Social Security Disability glossary and answers to frequently asked questions.  Please feel free to contact Molly Clarke at mac@ssd-help.org with any questions about applying for disability benefits.

Crohn’s Disease and Social Security Disability Benefits

Crohn’s Disease is an incurable, autoimmune medical condition that generally causes damage and inflammation to the large and small intestines.  Those who suffer from this condition can experience significant abdominal pain and may have difficulty controlling bowel movements.  People with Severe Crohn’s Disease may also suffer from an ongoing variety of serious medical effects of a compromised immune system.  The cumulative physical effects of Crohn’s Disease can also result in severe mental health problems.  If you have Crohn’s Disease and suffer from severe and frequent symptoms, you may find it impossible to maintain steady employment. The resulting loss of income and lack of medical insurance can be financially devastating.

If you find yourself facing these circumstances, you may qualify for Social Security Disability (SSD) benefits. The following will provide you with the information you need to begin the SSD application process.

Social Security Disability Benefit Programs

SSD benefits are governed and distributed by the Social Security Administration (SSA).  The SSA operates two separate programs that provide financial assistance to sick or disabled individuals. Each of these programs has their own set of eligibility requirements.

•  SSDI – Social Security Disability Insurance (SSDI) is a program that offers benefits to disabled workers.  SSDI is funded by taxes that workers throughout the country pay into the program. Therefore, eligibility for SSDI is determined by applicants’ work history. To qualify, you will need to have earned income and contributed to the program in the past. Click here to read more about SSDI. 

• SSI - Supplemental Security Income (SSI) is a needs-based program that provides benefits to disabled or elderly individuals who have very little income. To qualify for SSI, individuals must meet very strict financial limitations. Click here to read more about SSI.

In some cases, applicants can qualify for both SSI and SSDI.

Is Crohn’s Disease a Disability?

In addition to meeting the technical requirements that have been listed above, individuals must also meet the SSA’s definition of disability. Generally, the SSA considers a disability to be a condition that is expected to last at least one year and keep an individual from working.

To judge the severity of a specific condition, the SSA consults an official guidebook of potentially disabling conditions, known as the “Blue Book.” To qualify for SSD benefits with Crohn’s Disease, applicants must meet the criteria of Blue Book listing “5.06- Inflammatory Bowel Disease.”   Criteria for this listing include:

•  Having a diagnosed IBD***

 -AND-

• Having an obstruction of the small intestine or colon that requires at least two hospitalizations 60 days apart in a 6 month period.***

 -OR-

• Two or more complications related to your Crohn’s disease that include untreatable anemia, a bowel obstruction, significant weight loss, a painful abdominal mass, an abscess or fistula.***

Here is this Blue Book listing on the SSA’s website.

***The SSA will consider the combined effects of all conditions that you may suffer from. For this reason, it is important you include information about any other ailments your Crohn’s Disease may have caused. This will give the SSA a better understanding of your limitations and consequential inability to work.

Medical Vocational Allowance

Individuals who have Crohn’s Disease may find that while they don’t meet the specific Blue Book requirements, they are nevertheless disabled by their condition. In that regard, if your symptoms keep you from maintaining employment but don’t match the Blue Book criteria, you may still be able to qualify for SSD benefits under a “Medical Vocational Allowance.”  

For example, if an applicant has not been hospitalized two times in the last six months, but cannot keep their job due to daily ongoing unpredictable bouts with paralyzing severe bouts of cramping pain or because they must spend extensive amounts of time each day in the bathroom—the SSA may take this into account and award this person benefits under a “Medical Vocational Allowance.”

To determine whether or not you qualify for a Medical Vocational Allowance, the SSA will look for evidence that your condition limits your ability to sit or stand for significant periods of time, lift or carry items, or follow instructions. The SSA will also consider your age, past work experience, and your ability to re-train and enter a different occupational field. Typically, and this may be of significant importance to many people, the SSA considers applicants 50 years or older to be unable to be re-trained to adapt to a different type of work.

 Preparing to Apply for Social Security Disability Benefits

Although the applications and instructions necessary to apply for SSD benefits are readily available on the SSA’s website, it is important not to rush into this process because many applications are initially denied because applicants made simple mistakes, are disorganized or do not supply the correct medical documentation.  In such instances, applicants must go through an appeals process which could take YEARS.  Therefore, before applying, make certain that you have financial records, physician’s statements, treatment histories, and any relevant medical exam results to support your disability claim.  As a result, by simply understanding what is expected during this process and being thorough in your preparation, you can significantly increase your chances of quickly receiving the financial assistance you need.

The Application Process & Attorney Fees

Once you are ready to begin the application process, you can do so online or in person at your local Social Security office. If at any point you are feeling overwhelmed or confused by application procedures, it may be in your best interest to retain the services of an attorney or patient advocate. A legal professional can assist you at any stage of the process and will ensure that your application thoroughly documents your condition and symptoms.  Moreover, the attorney who represents you applying for disability benefits is only paid if you are awarded benefits. If your claim is denied, your attorney will not receive any sort of compensation.  Additionally, the SSA has certain limits in place regarding attorneys’ fees such that they can only receive 25% of the applicant’s first payment (i.e., his or her “retroactive benefits”) or $6,000—whichever amount is less. This money is deducted from the successful applicant’s first payment and sent directly to the attorney by the SSA. 

After Receiving a Decision

A   As previously mentioned, many initial applications for SSD benefits are denied. This happens for many different reasons. Most often, applicants are denied for the following reasons:

• His or her claim lacks hard medical evidence.

• The applicant is filing a new claim rather than appealing an old claim.

• The applicant’s income exceeds the “substantial gainful activity” allowance (i.e., $1,040 per month).

• The applicant fails to follow treatment as prescribed by a doctor.

• The applicant fails to attend appointments or respond to requests for more information from the SSA.

If your initial claim is denied, do not panic. You should appeal this decision within 60 days.

After Being Awarded Disability Benefits

If you are awarded benefits, the SSA will conduct “continuing disability reviews” approximately every three years. In some cases, when the applicant is expected to recover, the SSA will conduct reviews sooner. In cases where the applicant is not expected to recover, the SSA may wait longer to conduct a review. When conducting a continuing disability review, the SSA will request information similar to the information required as part of the initial application. For this reason, it is important that you continue to seek medical treatment and keep copies of all medical records.

The SSA will discontinue a person’s benefits if they are no longer disabled or earning “substantial gainful activity.”

 ***************************************************************************

For more information about applying for SSD benefits with Crohn’s Disease, please visit this page, Crohn’s Disease and Social Security Disability.

May 22, 2013 – Please pardon the recent inconsistent entries but I have been battling a rare and unpredictable lung condition related to my Crohn’s Disease which currently limits my ability to function on “all 8s.”  In the future, I plan to invite some Guest Bloggers to share their perspectives on Managing Chronic Illness.  I am hoping things will return back to normal during the summer sometime.  Thanks for your patience.

What are “Invisible Effects” of Crohn’s & IBD?

Due to the proliferation of health care social media and the relentless efforts of various Patient Advocates, Patients and well-intending organizations like the Crohn’s & Colitis Foundation (i.e., the “CCFA”), people are now generally familiar with the physical effects of Crohn’s Disease and the associated challenges it places on its patients.  To be clear, though, some use the terms “IBD,” or Inflammatory Bowel Disease, and Crohn’s Disease interchangeably, when technically IBD is a “catch-all” term for digestive diseases which have an inflammatory component.  More accurately, Crohn’s Disease and Ulcerative Colitis primarily make up IBD but there are other IBD conditions.  That said, people without Crohn’s Disease or IBD never learn of the “Invisible Effects” these often pervasive diseases cause the patient to bear.  These Invisible Effects are not shared with family and friends because, for the most part, they are not “medical” and thus require the patient’s attention to “lifestyle issues” in an attempt to live life as normally as possible.  And let’s face it, who wants to hear about why a person or patient must have their Credit Cards on automatic bank account payment due to the unpredictability of emergency hospitalizations and disabling medical conditions?

 Why these “Invisible Effects” of Crohn’s and IBD are known by few

There is an almost intuitive and inherent fear amongst many Crohn’s Disease patients that friends and family would be “pushed away” if they understood what their day-to-day managing of these Invisible Effects actually entailed, almost as if the cumulative amount of the effects of Crohn’s Disease could reach a friendship or relationship “tipping point.”  After all, people by their nature want to be supportive but the conversation would always be one-sided if the loved one starts by asking the Crohn’s patient, “How are you doing?”  A Crohn’s or IBD patient couldn’t possibly accurately answer that question without touching upon these “Invisible Effects.”  The conversational standard for answering that question admittedly is superficial as the question has morphed more into a greeting than a genuine probe into a person’s well-being but therein lies the unique heretofore “silent” problems faced by Crohn’s and IBD patients.  Accordingly, I thought it would be enlightening for people who care about those with Crohn’s or IBD to see things from the patient perspective and in the process expose these “Invisible Effects” of Crohn’s Disease for the purposes of better understanding the unique but silent challenges Crohn’s and IBD patients bravely face.  I have listed many of them below with highlighted Sub-paragraph headings and succinctly elaborated beneath them where appropriate.

 The Mainstream does not truly understand the cause or triggers of Crohn’s Disease placing enormous & unwarranted guilt, pressure and emotional stress on patients and this lack of knowledge can cause devastating “Crohn’s Disease diagnosis journeys”. 

The poor education of the mainstream about the cause and treatment of Crohn’s and IBD forces patients to respond to questions or accusations related to changing a diet to “cure” Crohn’s and, worse, that they CAUSED IT with a poor diet or poor stress management skills.  Worse, some people, even some naive medical professionals, tell some Crohn’s patients prior to, and even after, diagnosis that the pain is “in your head” and not real.  Unfortunately, this “in your head” theory gets dispelled when the patient is rushed to the hospital emergency room for surgery to repair narrow bowels or twisted intestines.

For me, this happened in my early 20s and I could sense that the various doctors’ skepticism crept into the thinking of my family because, after all, nothing medical seemed to explain my extreme fatigue, abdominal pain, severe joint pain and inability to heal from common wisdom teeth dental surgery.  I even indulged my physicians’ recommendation to begin seeing a local psychologist because I wanted to find an answer to my medical problem and I knew I had to first exhaust every one of their ridiculous non-medical theories.  From my perspective, what was happening to me and my body was so palpable that I knew there had to be an underlying medical explanation.  But I knew I wouldn’t be taken seriously until I soothed the egos of the doctors treating me and eliminated each of their theories, one-by-one.

The first consensus amongst the “medical” physicians was for me to see a local psychologist to address my apparent need for attention by complaining about so many physical problems.  It’s hard for me some 30 years later to now convey how angry I was at the medical establishment for not “believing me” but I remember taking solace in my body being the best measurement of my medical condition and that it was only a matter of time for it to talk loud enough for the doctors to hear.  I lived this lie for several months after consulting with more and more doctors in and around New York City who also thought I was a hypochondriac since all superficial diagnostic tests were negative.

Mind you, my sessions with the local psychologist were a complete waste of time as he spent more time taking about my mother and father than he did on why I was feeling the way I did.  One day, however, I ate flavored popcorn at an office function of a job in New York City I had just started.  Shortly after my body started digesting the popcorn I experienced such severe pain that I ventured into the bathroom and locked the door.  To this day, I have no idea why I chose the bathroom for refuge but I imagine the stomach pain was so severe that I anticipated painful digestive repercussions.  The next thing I remember was waking up in an ambulance on my way to the local hospital.  The pain was so severe that it trumped the office embarrassment of getting so sick and needing help from people I barely knew and to this day I’m not sure if I ever went back to that office or thanked those kind people who looked out for my safety.  If for some odd reason I neglected to thank them, I hope they are reading this for that experience changed my life.

A few days later the attending gastroenterologist (GI) came into my room and showed me the results of some diagnostic tests which revealed I had something called “Crohn’s Disease.”  I had never heard of it so he handed me some informative brochures published by the CCFA.  As I read the brochures, each paragraph empowered me more and more as it described EXACTLY what I had been experiencing the past few months including the abdominal pain, extreme lethargy, joint pain and inability to heal properly from a common medical/dental procedure such as the extraction of all four (4) wisdom teeth.  As if on cue from a movie as I was contemplating my future with this new sidekick, a few minutes later the phone rang in my hospital room and it was the local psychologist I had been seeing.  He apparently obtained the phone number from my Mom when I failed to show up for two (2) consecutively weekly appointments (I was hospitalized for almost three [3] weeks).  He first appropriately inquired as to the status of my health and conveyed his well wishes for a speedy recovery but then he uttered the following words which changed my life: “Michael, do you see what you did to yourself now?”

I hung up on the local psychologist, actually I slammed the phone down while the psychologist was still speaking, and in doing so acquired the beginning of the confidence I would need to cope with my Crohn’s Disease as it got more severe in my 30s and 40s (I obviously still had much to learn about the composure part).  My family’s confidence in my coping abilities followed soon thereafter.  They had temporarily “abandoned” my logic in “listening to my body” although they never gave up on “supporting me” except they chose to follow what the doctors were saying instead of my body’s reaction to the situation.  I couldn’t blame them as they couldn’t “feel” what I was feeling and they were heeding the advice of experienced medical professionals.   Besides, they never stopped loving me so what beef could I possibly have with them?  None.

This was my “Crohn’s diagnosis journey” and thankfully it was relatively short in time duration but it took me through some VERY depressed periods where I knew even my family and friends doubted me.  I was also acutely aware that if I was wrong in trusting my body I was likely going to be labeled a hypochondriac and attention-seeker for the rest of my life and risk never being taken seriously again.  Well, MANY Crohn’s patients experience much longer “diagnosis journeys” and their self-confidence is tested even more than mine was.  This “Crohn’s diagnosis journey” is a situation which still exists due to the mainstream’s poor understanding of Crohn’s and IBD.   For many people, particularly those who reside in rural areas where doctors see a minimal number of Crohn’s cases and thus are not as sharp in spotting it especially when it is a complex Crohn’s case seemingly masked as some other more obvious disease, obtaining a correct diagnosis of Crohn’s or IBD can be a tortuous, time-consuming, expensive and emotionally devastating process.

But you look so good?

Crohn’s itself has been described as an “Invisible Illness” because the patient’s superficial appearance can have nothing to do with his or her internal intestinal health.  I’ve tried to train friends and family that how I look often has nothing to do with how I feel but human nature being what it is; people tend to believe what they SEE and not what they HEAR.  I have lost friendships over this issue after I’ve socialized with them on a Friday night only to have to cancel on their child’s Bar-Mitzvah on a Sunday due to an unexpected disabling Crohn’s flare-up.   People sometimes don’t trust that which they can’t understand and if many doctors don’t truly understand Crohn’s, I’ve come to understand that this can happen even with friends and family.  That said, over time I have developed a circle of close friends who understand when I don’t or can’t attend something.   Strangely, this Invisible Effect of Crohn’s has weeded out superficial and narcissistic friends and has become somewhat like “x-ray vision” into providing me with perspective into the quality of people I encounter.  Still, this has affected some former very close friendships of mine simply because Crohn’s can be an “Invisible Illness” and sometimes I wish there was an objective way to communicate sincerity.  I maintain this same position with respect to an objective scale for levels of Pain such that a doctor could understand my Pain and treat me accordingly.

Lack of Consistency in Personal and Professional Lives.  

A main characteristic about Crohn’s Disease is that it is “consistently inconsistent” and that makes planning ANYTHING a risky proposition. In business, this can ruin relationships especially in an economy where patience is no longer an option.  In personal relationships, the need to cancel on cheerful events too many times could force the Crohn’s patient to the back of the address invite book until they finally are no longer called to participate in such events as the former friend simply assumes their “Yes” or “No” can’t be counted upon.  As mentioned above, however, as I matured Crohn’s Disease eventually gave me laser-like perspective about who was and wasn’t a true friend for frequently cancelling on attending birthday parties and weddings should not equal a friendship-ending foul.

Doctors always having a “crutch” when a seemingly unrelated medical problem isn’t easily diagnosed. 

Once a doctor knows you have Crohn’s Disease, it has been my experience that they can stop searching for answers to certain medical problems which are difficult to diagnose.  They blame Crohn’s Disease when with other patients they might probe further.  This is medically dangerous and disrespectful to a Crohn’s Disease patient.  After all, if a man in a wheelchair came in to see a doctor complaining of kidney stone-type pain, I would hope that doctor wouldn’t blame the immobility of being in a wheelchair.  In the case of a Crohn’s patient, a very common referral for any ailment is to a Rheumatologist due to the predominant Crohn’s characteristic being the patient’s autoimmune issues and compromised immune system.  Oftentimes, however, Crohn’s patients know their bodies better than new doctors do and if a patient thinks he or she has a kidney stone and has a history of such, I would hope the doctor would refer the patient to a urologist instead of a rheumatologist but a Crohn’s patient may have to advocate in a vigilant manner for that to happen.  In summary, the Crohn’s or IBD patient must also be his or her own Patient Advocate when seeing medical professionals about new ailments because too often is the case when they are referred to a rheumatologist due to their compromised immune system.

Getting treated by non-GI doctors and having to explain why you might need stronger or longer antibiotics due to your weak immune system. 

Some new doctors or physicians you are not familiar with don’t want to believe the unique medical effects of your Crohn’s Disease which you are all too familiar with having lived with the disease for many years.  So when you suggest a stronger antibiotic or longer course of antibiotic based on your prior experience, they often refuse to give Crohn’s its due deference.  This is like a doctor prescribing additional aerobic exercise to a patient who has a history of asthma and ignoring the patent’s input about his or her inability to do any more exercise as a result of its effects on his or her ability to breathe.  In the asthma case, doctors listen so why are the unique medical effects of Crohn’s Disease often overlooked by doctors?

Side Effects from Biologics.

Over the past few years, researchers have identified a common vulnerability in Crohn’s Disease patients which causes their immune system to attack THEMSELVES when they should be attacking the outside abnormality such as Allergies, the Flu, etc.  This created a form of potent drugs which, when successful, often puts Crohn’s Disease into Remission for relatively long periods of time. These drugs are Remicade, Humira, Cimzia and Tysabri.  While these drugs do help MANY patients, they also can cause serious and frequent side effects in patients such as Cancer, lethal Fungal Lung Infections and other serious to severe Respiratory Conditions.  Not everyone who takes these drugs is vulnerable to these side effects, but one can reasonably opine that it seems the FDA underestimated the severity and frequency of these side effects when they approved these drugs for usage in treating Crohn’s Disease.

As a result, the FDA has subsequently issued “Black Box Warnings” on these drugs, primarily on Humira and Cimzia, which require the manufacturers to CLEARLY list on the drug’s packaging that the drug has, and can, cause such lethal side effects. In full disclosure, I am a patient who is suffering from a severe lung infection which the Pathology Department at the Mayo Clinic has been unable to define and which in the past has required me to undergo chemotherapy to save my life.  I can’t “prove” this strange and possible lethal lung infection came from Humira or Cimzia (both of which I took for my Crohn’s) BUT when one of the world’s most prominent health institutions writes in a Pathology Report after a surgical lung biopsy that they can’t specifically identify the source or name of the obvious harmful lung problem, it is a logical leap to assume this had to be caused by the Biologics since nothing else in my life has changed.

The FDA felt the increasing need to convey the importance of these Black Box Warnings and took to YouTube in an attempt to reach the most Crohn’s patients since many were being passively influenced by the TV Commercials for the drug Humira which in the first 15 seconds of its TV commercial VISUALLY highlights the potential lifestyle changing effects of taking the drug but in the remaining 15 or 30 seconds uses a “mechanical” and monotonous VOICE-OVER technique to convey the legally required SIDE EFFECTS.  Accordingly, the Humira TV commercial is approximately 1/3 advertisement and 2/3 Legal Disclaimer.

But trying to take an objective perspective, I fear the incurability of Crohn’s Disease combined with the FACT that these Biologics do help MANY people created an environment whereby the FDA approved the drugs probably prematurely because they figured if it helps many people “get back their life” even at the expense of several others experiencing disabling side effects, it was a worthwhile trade-off.  However, the FDA’s subsequent increased vigilance in informing the public about the seriousness and frequency of these side effects seems to indicate that increased Patient Data and History is possibly making the FDA rethink their original position I’ve articulated above.  Contrarily, over recent years the FDA has been successfully lobbied by the manufacturers of Humira, namely Abbott Industries, to expand the application of Humira to Pediatric Crohn’s Disease (in Europe) and to Ulcerative Colitis in the US.  It is a convoluted situation which helps many Crohn’s patients and disables some or many others.

While Biologics seem to be the last line of defense for many Crohn’s patients, I pray it works for them.  However, there are other researchers pursuing different underlying pathologies which would result in drugs which might make Biologics extinct.  Only time will tell. Alternatively, it is also possible that the manufacturers of Biologics will “refine” their drugs to mitigate the aforementioned severity and frequency of their side effects.  The takeaway from this sub-paragraph is that even the lifestyle-saving or remission-inducing Crohn’s and IBD Biologic treatment drugs come at a controversial cost which is still not entirely understood.  That said, if I were a patient with no options but Humira, having exhausted all other treatment options, I would want to be enthusiastic and positive about the drug’s chances to help me.  But if this type of Crohn’s patient were being fair, he or she couldn’t honestly take such a position although they MUST.  I wish that weren’t the case but that is what Crohn’s and IBD patients must deal with and I think the public and mainstream is unaware of how brave these types of Crohn’s and IBD patients must be.

Automatized Credit Card payment schedule.

Years ago when I was in and out of hospitals with the same frequency and unpredictability as Lady Gaga’s wardrobe changes, I was always late on paying my credit cards and had to pay a $25.00 late fee after being late more than 2 or 3 times on paying any one credit card.  Having Credit was and is vital to my survival since I always need a credit card to host medical debt which surpasses my liquidity.  To preserve that Credit, I was forced to set up automatic payment mechanisms tied to a bank account.  This way all I had to do was make sure the bank account had a high enough balance at the end of the month.  This solved the credit card Late Fee problem but it limits my financial planning and liquidity.  Perhaps not a big deal to people with an overflow of money but just another thing a Crohn’s and IBD patient must attend to or risk losing the Credit he or she needs to pay for the expensive medical treatment he or she will undoubtedly require in the future.

Your Degree of Pain is always challenged and having a Pain Management Doctor can unfairly label you a drug addict or drug seeker.  

Since Crohn’s Disease has such a broad-spectrum “Severity Scale,” many medical professionals assume you are on the low end as there is no way to objectively determine how bad you are suffering and they want to protect themselves from patients with addiction problems looking to use their diagnosis of Crohn’s or IBD as a license to get narcotics every month.  Responsible pain management doctors also only want to dispense the least amount of narcotics as is necessary.  Additionally, narcotics and opioids, while helpful as painkillers, also take a serious toll on the digestive system as they slow the body’s natural process of “Peristalsis” which moves chewed items down the digestive track.  This interruption in the digestive track can complicate Crohn’s and IBD and for that reason Gastroenterologists (GIs) don’t like prescribing them.  But they are the most effective painkillers, especially when Crohn’s and IBD patients can’t take anti-inflammatory over-the-counter painkillers because they are even more abrasive on the digestive track, and without them patients with Severe Crohn’s pain would suffer in a way tantamount to cruel and unusual punishment.

Still, this reality often causes some Gastroenterologists to refuse to prescribe opioid painkillers and/or to even inform the Crohn’s patient that there exists a specialty of doctors who practice “Pain Management” responsibly. I have been outspoken on this issue because once I learned of the Pain Management specialty and found a trusted and respected Pain Management Doctor, I chose to become somewhat “dependent” on painkillers so that my Crohn’s wouldn’t keep me on the couch while my friends or family were busy making life memories on celebratory occasions.

While under the care of a duly licensed and responsible Pain Management Doctor, I have also learned of the difference between “dependence” and “addiction.”  Many Crohn’s patients become “dependent” on narcotics or opioids to maintain some semblance of a quality of life or normal lifestyle.  I chose that path for many years and I relied upon my medical professional to identify if I ever wavered into the area of “addiction” as it can be a slippery slope.  However, that is exactly why I chose to be monitored by a Pain Management physician.  I was able to do this because I was always 100% candid with my Pain Management doctor.  With such an option available for Crohn’s patients, I am ASTONISHED at the number of emails and communications I receive from Crohn’s patients around the world who tell me that their GI doctors will not address their pain, so what should they do?  My heart aches for these Crohn’s and IBD patients.

To choose Pain Management to maintain some degree of quality of life despite Severe Crohn’s Disease, the patient must sign a Contract with the doctor that requires the patient to see the doctor once a month, use the same pharmacy to obtain narcotics and to obtain narcotics only from that doctor.  It is a small price to pay for a reasonable quality of life despite severe pain.  But having to see a doctor once a month, every month, of every year, is expensive and somewhat draining on that quality of life.  I guess my business school professor was correct: “There is no free lunch in life.”

Additionally, once you become dependent on a pain management doctor, it makes relocation difficult because chronic pain patients are now looked upon with skepticism and new pain management doctors are not exactly eager to take in Crohn’s Disease patients unless they can establish their past experience with the pain management specialty through voluminous Patient Notes from their previous doctors.  Changing pain management doctors can also be required when the patient or his or her company changes health insurance companies which these days is a common annual occurrence due to pricing of health insurance plans.  Then trying to locate a new pain management doctor can become almost like a full-time job as the patient must often go through MANY “interviews” with different doctors to ensure there is a “match” between patient and doctor in terms of understanding needs, lifestyle and personalities.

In summary, Pain Management is a wonderful option for Crohn’s patients with chronic severe pain but it comes at a price which is not just financial and the patient is often stigmatized by pharmacies and hospitals as a drug addict or drug seeker when all they are doing is seeking treatment for a legitimate medical problem which in this case happens to be chronic pain.  This drug addict or drug seeker stigma attached to simply seeking relief from chronic severe pain caused by Crohn’s or IBD, can have professional, social and emotional effects upon the Crohn’s or IBD patient.  This doesn’t seem to happen to patients with diseases more typically associated with pain like Cancer but Crohn’s and IBD can be as painful as ANY disease.  Another burden to bear for the Crohn’s and IBD patient which is not often discussed.

Relationships and intimacy becomes much more difficult.

When do you bring it up?  How do you bring it up?  Should you bear children in case you are worried about “passing it on”?  Also, the financial burden that comes with MANY years of Severe Crohn’s Disease can also affect one’s “attractiveness” as it is completely fair to assume many people do not want to enter into a relationship and assume a tremendous amount of medical debt which will only increase over time.  Some might snicker at this point but life is not a love story and reality pokes its head in every now and then.  Applying that to my life, I know that several women I have dated have terminated our relationship because of this issue (even though in some instances other reasons were given at the time) and many more have unbelievably controlled themselves from my formidable charm and avoided beginning intimate relationships with me so they would not have to ultimately make that choice.

I JOKE about my charm and whatnot but I always had girlfriends and it wasn’t until my Crohn’s began to disable me more and more that I began to notice women taking a longer term look at our possible situation and deciding to walk away.  I NEVER got angry about it because if I were their parent I would want them to be HAPPY and whether we want to admit it or not, it is a “green world,” as my Dad often said, and without money or being in always-growing medical debt, happiness would undoubtedly be even more difficult to attain as 50% of all marriages fail as is.

A few years ago when I became disabled due to my Crohn’s, I also felt guilty about bringing a woman into a life filled with chronic sickness and ever-expanding medical debt and when evaluating the prospects of a long-term intimate relationship such as marriage, a woman has the right to know this type of information.  This is why I have dedicated my life to being a Crohn’s Disease Advocate.  I am still hopeful to meet the right woman but I realize that due to my disabling disease I might have to settle for a dog – but even owning a dog comes with financial and physical responsibilities so I’m not even sure I can do that – at least at this point in my life.  I joke but it is true.  That said, I LOVE dogs and realistically that is my goal at some point soon.

Chronic Temporary Disability from Work could make it difficult to keep a job. 

Not every Crohn’s patient gets disabled, but even after a bowel resection surgery, they may be on State Temporary Disability from their job.  This is something all workers are entitled to in their State but the chronic nature of Crohn’s could make this a fairly frequent event.  Before you know it, others at the company may start to look at YOU as the reason why the cost of their healthcare insurance keeps rising.  Despite provisions for protections against discrimination in the Affordable Care Act and in the American’s with Disabilities Act, companies have ways to “discriminate” without formally running afoul of these anti-discrimination or pre-existing illness laws.  This is just a reality which Crohn’s patients must be aware of as they navigate the otherwise challenging climb up the corporate ladder.

New helpful medications might be deemed “experimental” and not covered by insurance. 

If these new helpful medications are “reimbursed” by health insurance, the health insurance reimbursement may be very small.  More common is the situation when a few drugs are used, or will be used, in semi-successfully treating Crohn’s but for “off-label” purposes.  Such “off-label” usage (i.e., using a drug to treat conditions other than it was approved for by the FDA to treat) may also make health insurance reimbursement difficult.  This occurs, for example, when doctors realize that a certain drug approved by the FDA to lower cholesterol in the blood (such as the drug, “Colestid”) can be successfully used to “bind bile salts” in Crohn’s patients who have lost their Terminal Ileum.

This Colestid example happened to me several years ago when I lost my Terminal Ileum in a surgery and as a result was unable to digest “fats” and “bind bile salts.”  The practical result was that I was in the bathroom 30-40 times a day with relentless diarrhea until my genius New York City Crohn’s Doctor told me to “TRY” 4-5 Colestid tablets a day.  Remarkably, the diarrhea STOPPED and I was able to resume my lifestyle outside of the bathroom but not before having to appeal my health insurance company’s decision to decline reimbursing me for the cost of the Colestid because I was taking it for “off-label” purposes.  I had to appeal FIVE (5) separate times until the insurance company relented but this happens almost every time a Crohn’s patient has similar success with an “off-label”  drug.  You’d think the health insurance company would be supportive from a “Wellness” perspective but as my Dad used to say, “it’s a green world.”  This is an ongoing problem which Crohn’s and IBD patients will face as researchers and doctors continually search for better treatments with fewer side effects and ultimately, and hopefully, a cure.

Accumulated medical costs of a chronic Crohn’s Disease patient may cause financial problems which warrant bankruptcy-level solutions yet there is no state or federal bankruptcy protection “classification” for patients with chronic diseases they contracted due to them being passed down genetically through their family (as opposed to Lung Cancer they might have contracted from 30 years of smoking).

Constant extreme lethargy may be interpreted by family and friends as you being a “slacker” –

when it is simply your Crohn’s affecting you after being triggered by the environment, eating a certain food, allergies or just “because.” I feel guilty when all I can do on a given day is lie on the couch and flip through the TV channels but that’s how it is for Severe Crohn’s and IBD patients on many days – in-between bathroom trips.  When this happens frequently, some people may think you enjoy being a slacker but they have no idea of the frustration Crohn’s patients have deep down inside of not being able to regularly contribute to society.  Friends and family may start to wonder because the stark comparison between you healthy as opposed to you sick is frustrating to them.  Since you often can’t predict when these helpless days will occur, friends and family can become equally frustrated.  This then becomes a heavy burden to bear for the Crohn’s patient because we know our loved ones have the best of intentions but they begin to get frustrated by our disease as much as we do except they don’t “feel” the overwhelming tide of lethargy and therefore they apply logic to try and understand Crohn’s and that simply won’t work as science has not yet figured it out.   As Musician and Master Story-Teller Tom Petty wrote and sang in his song “Refugee:” “It’s just one of those things you gotta to feel to be true.”    

Family and Friends may not visit in the Hospital because they assume you’ve been hospitalized so much that “he can handle it” –

yet we all get lonely in the hospital and doing time in a hospital never gets easier.  As I get older I come across this more and more.  I never judge who comes or doesn’t come to visit me in the hospital other than evaluating my own needs for company and a diversion from the loneliness and pain.  That said, I am always appreciative of whoever comes to see me or call me when I am hospitalized.  But I do get upset at the thought people assume I can “handle it” because I have been hospitalized over 200 times.  Being a hospital patient is NEVER easy regardless of great nurses and compassionate physicians.  If these people only knew that being a patient in a hospital is closer to being a prisoner in a jail than to anything else then maybe they would appreciate the isolation, loneliness and fear one feels when they are lying in a hospital bed in pain with tubes coming out of every orifice.  I don’t wish it on anyone but I don’t know how else to convey to family members that just hearing the VOICE of a loved one is comforting inside a hospital even if you have a tube down your throat and can’t talk.

The side effects of the typical successful Crohn’s medications like Prednisone can be so serious –

they can affect your social and professional lives (i.e., moonfaced) and cause serious medical problems later on in life such as Hip Replacement. Additionally, immuno-suppressant drugs such as Imuran and 6-mercaptopurine (6MP) can have LETHAL long-term effects causing Cancer and Liver disease. Crohn’s patients must live with the harsh reality that in many instances the most successful treatment can cause external and internal medical problems which are as bad as or worse than Crohn’s itself.  If this doesn’t convey the almost barbaric scientific manner in which Crohn’s and IBD are treated, I don’t know what else will convey this “treatment can be worse than the disease” risk which all Crohn’s and IBD patients must assume.  This is not a criticism of the medical profession or medical professional; it is just an observation about the slow scientific process being made in treating and curing Crohn’s and IBD.

Obtaining Social Security Disability can be more difficult because the potential seriousness of Crohn’s Disease is not well-understood by the Mainstream. 

Accordingly, if you can’t work because of being disabled by Crohn’s, you sometimes have to wait 3-5 YEARS to finally prevail in Court after having to hire an attorney and giving up a large percentage to him or her for the cost of their helpful legal services.  This varies from State-to-State but I hear too many stories of people with Severe Crohn’s or IBD being denied and denied despite having voluminous medical proof almost as if the Social Security office thinks the Crohn’s patient will give up after a while.  I have also heard of stories where patients with Crohn’s are awarded Social Security Disability Benefits only to have them taken away when their case is reviewed in a few years which then re-starts the nightmarish cycle of re-application for Social Security Disability Benefits.

If you do become Disabled or Limited in your work capacity, certain family members may look at you as never having reached your potential and a strange family dynamic may be created despite them having had just as much of a genetic chance of having contracted Crohn’s as you did.   

This is the familial effect of Crohn’s and IBD because through no fault of your own and “but for the Grace of God there go I,” it could have happened to any one of your siblings – you just drew the unlucky genetic card.  This unfair familial judgment doesn’t happen within every family with a Severe Crohn’s or IBD patient.  It also can manifest itself differently with each family but it definitely happens and it is due most likely to human nature and to the Severe Crohn’s or IBD patient “looking fine” but being disabled.  This “judgment” can permeate what should be celebratory family functions such as Anniversaries, Christmas, Mother’s Day, Father’s Day, etc. but instead the Crohn’s patient comes to despise family functions because they feel they are being judged by people who could have just as easily been in their position.  This explains why many Crohn’s patients get depressed during holiday season.  Perhaps some of the intensity of the familiar effect is in the minds of Crohn’s patients but due to the genetic nature of having contracted Crohn’s there is logic behind a certain kind of weirdness taking place when getting together with siblings who could have just as easily been the family member who contracted the Severe case of Crohn’s.

Your values in life change as “Happiness” is now defined by the ability to SMILE and be PAIN-FREE as opposed to using that Tax Refund to go on a 10-day trip to Europe.

Traveling with Crohn’s Disease can be laborious and frightening.

While traveling, your worst nightmare can come true if you have a flare-up in a rural area where medical professionals don’t see many Crohn’s Disease cases.  Nevertheless, you must prepare for such an event and that makes packing for travel rather arduous. With the best of intentions these foreign medical professionals could treat you in a textbook manner (e.g., Prednisone or straight to Biologics) when what you might need is less intense medications or simple Intravenous Fluids for a few days or other medications which you take at home but which might not be so well-known in those parts of the world or they might not be so well known in terms of their application to treating Crohn’s disease. Suffice it to say, the guy who chases “River Monsters” on the “Animal Planet” Cable-TV channel, namely, Jeremy Wade, does not have Crohn’s Disease!

Hiring a Mental Health Professional is challenging. 

It is hard to find one who can relate to the unique challenges of the chronic Severe Crohn’s patient and it is difficult to afford paying them when you can’t work and earn money.  Otherwise, support to cope with all of the above is thankfully a bit easier now more than ever before due to health care social media which people use to connect with each other to “relate” to one another about symptoms and treatments.  Crohn’s patients, or “Crohnies,” as they are often referred to on-line, also join Virtual Patient Communities and participate in helpful TweetChats.  Still, there are so many Invisible and Visible “issues” for the Crohn’s or IBD patient to discuss with the Mental Health Professional, where does one start?

]]> http://hospitalpatient.com/crohns-disease/invisible-effects-of-crohns-disease-ibd/feed 9 http://hospitalpatient.com/crohns-disease/why-chronic-diseases-are-expensive-medical-conditions-even-for-patients-with-health-insurance?utm_source=rss&utm_medium=rss&utm_campaign=why-chronic-diseases-are-expensive-medical-conditions-even-for-patients-with-health-insurance http://hospitalpatient.com/crohns-disease/why-chronic-diseases-are-expensive-medical-conditions-even-for-patients-with-health-insurance#comments Fri, 12 Apr 2013 19:29:52 +0000 Michael A. Weiss http://hospitalpatient.com/?p=1232 Continue reading →]]>

I get asked this question many times by friends and acquaintances.  They care a great deal about me and can’t understand how my Crohn’s Disease has so badly damaged my financial “health” when all along the almost 30 years of my journey with the disease I have maintained my Health Insurance.   This is what I tell them when I try to explain.

 The “Reasonable & Customary” Health Insurance Financial Gap

Any Chronic Disease such as Crohn’s Disease and Inflammatory Bowel Disease (“IBD”), which are also incurable with autoimmune components, can create ongoing needs for medical care, expensive drug treatments, unpredictable or emergent hospitalizations and possibly several surgeries.  While having Health Insurance is BEST, people don’t typically understand that in an ideal setting the Health Insurance Company may pay 70% of the cost of what they deem to be “reasonable and customary” for any of the aforementioned medical costs but there may be also be a significant “Deductible” which has to be met before that Seventy (70%) Percent of Reimbursement kicks-in.  Moreover, what Health Insurers deem “reasonable and customary” in St. Louis, MO, for example, may be vastly different from the actual charges in New York City, for example, but these geographic cost adjustments are typically not made by Health Insurers and that could leave a rather large FINANCIAL GAP in the “Charged Amount” which the Patient will have to pay, in addition to the Thirty (30%) Percent balance.

 “In-Network” Treatments – Divergence of Financial & Medical Patient Interests

The basic financial fallout is different when the Patient sees an “In-Network” physician but these days there are usually Health Insurer prerequisite “variables” attached to that AND, more importantly, the more complicated your case of Crohn’s or IBD, for example, the more reason you need to see a well-renowned Medical Specialist (as these doctors see more of such cases and thus are better prepared to help you). But these specialty or more experienced doctors increasingly do not accept ANY Health INSURANCE.  Since these “Specialists” are in such high demand due to the proliferation of chronic, auto-immune and incurable diseases, they are not lacking for patients and thus do not have to rely upon Health Insurers to increase their patient clientele.  Additionally, these Specialists can utilize their unique positions to focus on simply practicing medicine and helping patients as opposed to being the CEO of a Medical Practice which must employ several office workers just for the purposes of facilitating Reimbursement from Health Insurers. I say that with the utmost respect for these medical professionals because if most had the choice they would opt to be the scientists they trained to be in medical school so they could help heal patients.

While it is ALWAYS in the Patient’s best financial interests to see an “In-Network” medical professional when they have Health Insurance, those interests may not align with the Patient’s medical interests in complicated cases of chronic disease or even in diagnosing cases of Crohn’s or IBD, for example, due to their almost individualized symptoms and often difficult to recognize initial manifestations.

Out-of-Pocket Costs of Alternative and Holistic Medical Treatments

Many patients with incurable chronic diseases like Crohn’s Disease are also increasingly turning to “Alternative” treatments or organic foods to combat BOTH their disease and any medication side effects and/or the stress which accompanies their chronic patient journey.  Short of minor acupuncture and psychological benefits, Health Insurers understandably are reluctant to get fully behind these “holistic” approaches because in many instances what works for one patient does not work for another. That “individualized efficacy” does not make for prudent general Reimbursement rules.  Furthermore, the providers of these alternative treatments are typically not “objectively” or traditionally “credentialed” such that the Health Insurers cannot readily trust their medical expertise in having in-network physicians refer or recommend patients to them.  Yet, many Crohn’s Disease patients, for example, swear by these alternative, holistic and organic treatments but they must pay for them out of their own pockets.

Effects of Accumulation of Medical Debt w/ a Chronic Disease

In my case of having Crohn’s Disease for almost 30 years, the “accumulation” of these aforementioned 30% fees, Balance Bills, Specialty Physicians and Alternative Treatments has created substantial medical credit card debt.  This aggregate financial burden is common amongst people battling chronic disease and often leads these patients to seek bankruptcy protection in order to reorganize their financial lives. However, this can be a tricky proposition as these patients may wind up having debts written off by medical providers with whom they must have an ongoing relationship due to the chronic nature of their disease.   But, there are ways to “negotiate” fair resolutions to these situations since bankruptcy no longer carries with it such a negative stigma and medical professionals are more understanding of the effects of chronic medical debt so long as the patient is candid and upfront with the medical professionals.  (Please see my Video Interview with a prominent Bankruptcy Attorney regarding “Bankruptcy Options for the Chronic Disease Individual.”)

 Incurable Chronic Disease & NEW Promising, but Expensive, Drugs

In addition to the above VERY BASIC analysis, the cost of NEW and more promising Crohn’s Disease medications, for example, is usually extremely high and Health Insurers typically don’t cover a significant portion of their costs until said medication becomes more widely accepted.   These newer medications might also come with side effects which, in some instances, could turn out to be as painful, disabling and expensive as the chronic disease itself.  I am going through this at moment with severe respiratory problems which began after I started using one of the “Biologic” drugs which typically help MANY Crohn’s Disease patients.   It seems there’s no way to tell who these new drugs will help and who they will harm but it is a chance many, if not most, patients with incurable chronic diseases are all too willing to take due to the lack of effective treatment options and the mere chance of an improved lifestyle.

One Chronic Autoimmune Disease may lead to Another

Many Crohn’s Disease patients, for example, on the more severe “spectrum” of what is a “broad spectrum disease,” often develop secondary auto-immune diseases such as Rheumatoid Arthritis, Lupus, Fibromyalgia, etc. and that begins an almost duplicate “journey” through the Healthcare system causing the patient to incur all of the aforementioned expenses albeit for a different disease.   Additionally, years (or, in some cases, just months) of taking certain effective drugs can also create serious (and expensive) medical problems which must also be addressed such as Hip Replacements (from taking the drug Prednisone) or, for example, repeated hospitalized bouts with Pancreatitis from taking immunosuppressant drugs.

 Multifaceted Cost of being Disabled from a Chronic Disease

Finally, and please understand that the foregoing is a simplified analysis of a complex problem which has individualized components and can be affected by a variety of variables, the disabling (and unpredictable) nature of many chronic diseases prevent the patient from consistently working and earning a living.  Depending upon the severity of the disease and/or the frequency of chronic disease flare-ups, the inability to consistently create cash flow worsens the effects of continually accumulating medical debt.  Additionally, besides the disabling physical effects of chronic disease exponentially compounding its financial effect, the feeling of “helplessness” caused by ravaged personal credit ratings and constant medical creditor dunning notices can lead to depression.   This depression is real and understandable given the realities of a life constantly battling these types of pervasive chronic diseases on a multitude of fronts.

For the chronic disease patient, knowing that you will, at one time or another in the future, have to continue seeking expensive medical treatment combined with the physical uncertainty of your ability to work is almost like literally adding “Insult to Injury.”

This is Video Answer Number ONE (1) in a NEW Video Series of Answers to Important Questions for the Crohn’s Disease, Colitis and Inflammatory Bowel Disease (IBD) Patient.  These Answers have been compiled with the knowledge and experience of the growing members of the Crohn’s Disease Warrior Patrol (the “CDWP”).  This is NOT Medical Advice and is being offered solely for support, by Patients, for Patients. 

This 6-minute Video details the following CDWP Answer to this Question:

1. Find the Right Doctor FOR YOU;
2. Collaborate with your Doctor;
3. Patient “Engagement” – Don’t be Passive;
4. Organize & Collect your Medical Data; and
5. Learn to be “Patient” & Maintain “Perspective.” 

Copyright © 2013 CDWP – All Rights Reserved

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.

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 1^st 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 2^nd, 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 2^nd to reassess my options.  I just had to get through these doctor appointments in NYC on Tuesday, March 26^th 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 1^st 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 2^nd 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. 

What Exit in New Jersey are you from?

This picture of MY ROOM IN THE EMERGENCY ROOM (”ER”), taken by me on Tuesday, March 26, 2013, from a New Jersey Hospital’s Emergency Room (“ER”), was demanded to be deleted from my phone by that hospital’s security personnel as they escorted me out of the ER, after I was forced to remove my own Intra-Venous Line (“IV”) causing my blood to squirt so high it almost hit the ceiling,  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 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 song 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, …

These days, Emergency Rooms Render Triage Medicine on Steroids

Ironically, and in retrospect, this Exit Sign was fitting as a description for a bad experience in the ER of a New Jersey (“NJ”) hospital given all the NJ Turnpike Exit jokes which have come to unfairly define New Jersey in the lexicon of the public’s awareness.  However, please try and understand I am not identifying the specific NJ hospital because I don’t think that’s fair since I must have caught it on a busy night and my condition is extremely complicated such that a bad experience was certainly possible, as it is with ANY emergency room  visit in hospitals all across the United States.  After all, emergency rooms in the United States are designed to render triage medicine.  But due to ERs being overtaxed as sources of Primary Care for many Uninsured patients, the ER triage medicine model is on steroids out of bare necessity to keep serving its respective local communities.  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.  But just like there exists a Bruce Springsteen, Jon Stewart and Frank Sinatra to extinguish the stench from every “Jersey Shore” and “Housewives of New Jersey” entertainment industry venture which somehow permeates the mainstream’s consciousness, this experience with a NJ hospital and emergency room does not reflect the typical NJ medical interaction.

The Patient Consumer in a Hospital Emergency Room

Now that I’ve set the stage for this ER debacle and provided some context for my experience, please note this will be a two (2)-part Blog Post with this first one adding the necessary medical context for my ER trip so that you understand the seriousness of my situation and thus why I was so disappointed in how I was treated.  Part 2, which I will post shortly, will detail 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 ER 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. But before detailing what happened to me in the ER on Tuesday, March 26, 2013, it is important that you understand WHY I went to the ER.  Please trust I will make this part of the journey as interesting and entertaining as possible.

Brief Medical Background regarding my Crohn’s/Lung Condition

In order to best comprehend my contention that I was treated like an ANIMAL inside this NJ Hospital’s ER, it is necessary to share with you some pertinent personal medical details regarding my condition since it is a repeat of something I went through during the beginning of the spring in 2011.  As many of you already know, I have been battling the autoimmune and incurable Crohn’s Disease for almost 30 years.  I was diagnosed in and around 1984 when there wasn’t very many treatment alternatives other than surgery for my case of severe (and aggressive) “Obstructional” Crohn’s Disease.  As a result, as of today’s date, I have endured approximately Twenty (20) + abdominal surgeries and over Two Hundred (200) hospitalizations/trips to the ER.  I have also had several other serious surgeries related to, or caused by, the autoimmune aspects of my Crohn’s including, but not limited to, spine fusion surgery, two (2) cataract surgeries and knee, nasal and toe surgeries.

In approximately 1998, after I believe first being formally approved in 1988 as a “group” of “Anti-TNF Agent” drugs by the Food and Drug Administration (“FDA”), the FDA began approving certain specific brands of these drugs to help place Severe Crohn’s Disease patients into remission.  Without getting too scientific, these  “TNF inhibitors” or “Anti-TNF Agent” drugs caused TNF inactivation and that has proven to be important in controlling  the abnormal inflammatory reactions associated with autoimmune diseases like Crohn’s Disease where the abnormal reaction causes the body’s immune system to attack itself, rather than the cause of the inflammation.  The identification of the role of the “TNF” in the inflammatory response of patients suffering from autoimmune disease and the development of drugs to mitigate or control the TNF response were considered major breakthroughs in the treatment of incurable, autoimmune diseases.  As a group, these Anti-TNF Agent drugs are referred to as “Biologics.”

Introduction to “Biologics”

My first experience with Biologics was with the drug, “Remicade,” and it worked VERY WELL, at first, but then I needed the drug infused every 6 weeks instead of 8 and then I soon needed twice the dosage, until I started to develop signs I was allergic to it.  My doctors then watched me very closely and pre-medicated me with steroids, as they infused what would be my final dose of Remicade.  Unfortunately, within 48 hours of that Remicade infusion, I developed what can only be referred to as a “Delayed Anaphylactic Reaction” when my throat began closing and I was rushed to the hospital to be pumped up with even more steroids to counteract the allergic effects of the Remicade.  Please note this does not happen to many Remicade patients and I know MANY such Crohn’s Disease patients who are still on Remicade and feeling GREAT.  Anecdotally, I am also aware of many Pediatric Crohn’s Disease patients who do VERY WELL on Remicade.  In my case, however, as the Remicade had staved off what appeared to be an impending serious Crohn’s abdominal surgery, once I stopped the Remicade I soon thereafter turned up in the operating room.

Enter, the Biologic drug, “Humira”

Post operation, my doctors were concerned about me being on no medication to help thwart off any possible Crohn’s recurrences because my Crohn’s Disease had been very aggressive and each time it flared the possibly of surgery was all too real yet I had very little small bowel left.  Therefore, a year or two later I was put on the next “invented” Biologic Agent drug for Crohn’s, namely, “Humira.”  From a layperson’s perspective, and as it was explained to me, the differences between Remicade and Humira appeared to be that Remicade was discovered/developed using mice proteins whereas Humira was more pure and based on human proteins so that a patient allergic to Remicade might have much better success with Humira.  Humira was also an injectable drug as opposed to an infused one so it offered a greater degree of control over one’s life and lifestyle and that made it even more appealing to patients.

However, Humira came with many Medical/Legal Disclaimers about side effects including possible severe Cancers and lethal Respiratory Side Effects.  At the time I started taking Humira (approximately 2005), I assumed these Disclaimers were included in the drug’s labeling because there now existed some historical real patient data and a bunch of pharmaceutical (“Pharma”) lawyers were simply being thorough and candid in provided new Humira patients with as much patient data as possible. These Disclaimers were subsequently substantially strengthened in August, 2009, to reflect the Cancers which were occurring in Crohn’s patients using Humira such that the FDA issued the Pharma-dreaded “Black Box Warning Label” to reflect the possibility of Lymphoma being a side effect of taking Humira.

Humira, the FDA and YouTube

Beginning in November, 2009, some of the most serious changes in the Humira label came when the Black Box of the label was strengthened to include a serious risk of “opportunistic” respiratory infections including “Histoplasmosis” and “Bacterial Sepsis,” along with the risk of lymphoma and other cancers in children and young adults. The FDA even utilized YouTube in an extraordinary measure to convey these risks to Health Care Professionals and to Patients via THIS Video.  The Humira label was subsequently strengthened even further in response to DEATHS which were occurring from rare but fatal Fungal Lung Infections in Crohn’s patients using Humira. The FDA again used THIS Video and YouTube to convey the dangers of these Fungal Infections.  Leukemia was also subsequently added to this list of known serious side effects of taking Humira for Crohn’s Disease.  Despite this pattern of increasing risks of cancers and fatal respiratory side effects, someone in the marketing department of Abbott Laboratories, the manufacturers of Humira, apparently didn’t “get the memo” from the FDA as TV commercials celebrating the success of Humira placing Severe Crohn’s Disease patients into remission increased and started replacing Erectile Dysfunction drug commercials as the most rotated and parodied drug commercials on TV.   WATCH the TV Commercial HERE.

How Humira affected me re: Respiratory Side Effects

This began to affect ME approximately 12-18 months after I started Humira when I began to experience such severe and unpredictable joint pain that it felt as if I were a Voodoo Doll being pricked by a sadistic arch rival from high school.  The sudden onset of the joint pain was often so extreme that I could be walking and talking one minute and then laid out on the sidewalk the next.  However, my Crohn’s Disease seemed to be in remission so I was “okay” with the tradeoff of 50 daily trips to the bathroom now supplanted by being pricked with sharp needles all over my body by a guy named Skippy from High School just because one night I made out with his ex-girlfriend.   But, Skippy’s presence in my life was quickly replaced by recurring and increasingly intense bouts of Bronchitis and Pneumonia.  I, like most other people with compromised immune systems, had suffered from occasional respiratory infections and whatnot but since starting Humira whenever I got Bronchitis it almost always turned into Pneumonia and then the symptoms would be so bad I had to be hospitalized.  That had never happened before.

It is one thing to be 45 and hospitalized for recurrent Severe Crohn’s Disease but it’s entirely a different story when you begin to cough up blood and run fevers as high as 105 to the point where your gastroenterologist insists you be hospitalized.  This happened several times until I started researching it in the wonderful world of health care social media when I learned that other Crohn’s Disease Humira patients were experiencing the same severe respiratory problems.  The difference was, according to them, when they discontinued the Humira; the respiratory problems soon thereafter disappeared.  Shortly after recovering from my latest hospitalized bout with an epic case of Pneumonia, I asked my gastroenterologist if I could stop the Humira in hopes of alleviating these respiratory problems which were becoming far too frequent and disabling.  He acquiesced but insisted that I soon thereafter start taking the newest Biologic drug called “Cimzia” because he didn’t want me on no possibly “preventative” medication, again, given the aggressive nature of my Crohn’s and due to the fact that I didn’t have much more small bowel to donate to a surgeon.  I agreed.

Cimzia

Literally a few weeks after stopping Humira, my lungs felt normal and it seemed I had gotten back the strength to run, play tennis, chase women, etc.  I didn’t want to start the “Cimzia” until I knew for sure if stopping the Humira made that healthy difference in my lungs.  To truly trust such a conclusion, however, I needed to be methodical in my approach.  I therefore abstained from taking Cimzia until I was sure I had conducted a “controlled experiment.”  I also wasn’t so eager to jump back into the world of Biologics and thus took my time beginning the Cimzia.  After several months going medication “commando,” I was convinced I had isolated the Humira as the probable culprit for my hospital-grade respiratory problems so I was enjoying getting back to playing tennis and chasing women.  I started the Cimzia in and around 2009 after my tennis game had improved and I was again content that I was clueless about women.

Suffice it to say, the medical progression to Cimzia was analogous to changing from Remicade to Humira and it was also injectable so my lifestyle was improving and I was optimistic about my future.  But after only a VERY short while on Cimzia, the unmistakable “Skippy” joint pain and respiratory effects I had experienced while on Humira had come back, and this time they came back in spades.  It was unclear to me if my respiratory problems were caused by the cumulative effects of being on Humira for a few years or if they were triggered by an allergic reaction to the Cimzia, which I had just started.  (Subsequent to my respiratory problems relevant to this Blog Post, in July, 2012, the FDA again turned to YouTube to distribute THIS Video with their Black Box Label Warning for Cimzia due to DEATHS that were occurring from Fungal Lung Infections.)   

The Beginning of BOOP and Severe Lung Problems

It was spring, 2011 and I began to come down with strange spikes of 105 fever which would last but a few hours and go away on its own.  Then I developed Bronchitis which turned into Pneumonia and that began my “Darkness on the Edge of Town” as I had to go to local New Jersey hospital emergency rooms because my breathing became seriously labored (and I lived nearby in NJ).  The first few times I was admitted for tests and to determine the most effective antibiotic to treat my severe respiratory symptoms but soon it appeared I possibly had a strain of Pneumonia that was resistant to drug therapy.  In time, however, one of the antibiotics seemed to work and I was discharged but only to head directly into NYC to see my 30-year Crohn’s Disease doctor who is the most experienced and smartest physician I have ever encountered.  Yes, I had a pulmonary problem but given the respiratory problems associated with the aforementioned Biologics I had taken for my Crohn’s Disease, I knew this current medical fiasco was predicated on, or somehow connected to,  my Crohn’s Disease treatment history.  To that end, he first tested if I was allergic to the Cimzia but I was NOT.  Nevertheless, given my rather extreme and recurrent respiratory problems, I had no choice but to discontinue the use of ALL Biologics.  I was again going medication “commando” with my Crohn’s Disease and my NYC doctor was very worried.

Having recovered from a dangerous case of Pneumonia for which I was hospitalized in NJ several times, one day I walked a few feet to the mail box to pick up my mail and my sudden shortness of breath caught me by surprise and I passed out.  When I awoke, I couldn’t breathe and talk at the same time.  Trying to take a deep breathe was like sucking as hard as possible on a toothpick-sized straw.  I got scared very quickly and called my Internist who recommended I see a certain local respected NJ pulmonologist.  That doctor was kind enough to see me that day and as I struggled to breathe walking only the 50 feet from my car to his office, he merely tested my blood/oxygen levels and deemed me FINE.  I almost had to use sign language to communicate with him as I couldn’t catch my breath from that 50 foot walk but he just smiled and said I must have a heart problem so I should see a Cardiologist. From my perspective, it felt as if I had brought my dry cleaning into the dry cleaning store yet the owner of the dry clothing store was telling me I had to bring my jacket and shirt into the bagel store across the street in order to get it cleaned and pressed.  Let’s just call this doctor the “dry cleaner” because unfortunately he was a recurring character in this 2011 story.

The 2011 BOOP Emergency Room Visit

Luckily a friend of my family is a cardiologist and he saw me immediately after the dry cleaner had somehow misconstrued my simultaneous inability to talk and breathe as the new pulmonary endurance standard for the Olympic athlete.  The cardiologist did not concur with the dry cleaner and was SERIOUSLY CONCERNED about my inability to multi-task in this manner and after confirming my heart was fine he ordered me to go to the emergency room at a prominent NJ hospital very close to where I lived at the time.  This was also the same hospital I had been in and out of with my recurrent respiratory problems and seemingly drug-resistant Pneumonia so everyone knew me but I’m not so sure they were happy to see me as I was very scared and frustrated.  The anxiety which accompanies the inability to breathe is very much like the feeling a 9-year old Little Leaguer gets the first time he collides with the catcher and has the “wind knocked out of him.”  It feels as if you’ll never be able to breathe again and all you can do is wait for your body to “reset” itself.  But at 9 years old, you are unfamiliar with this process so it’s frightening.

At 48 years of age, I felt the same way each time I had to re-visit an emergency room and go through my medical history with a nurse.  My inability to consistently breathe and convert the process to an involuntary bodily function was not “kicking in” and talking only made it worse. Fear of the unknown is as traumatic at 48 as it was at 9 years of age although ice cream seemed to help when I was a kid.   Now it was just successfully flirting with an attractive nurse all the while lying to myself that she’s laughing at my jokes because I’m very funny. But what jokes?  I couldn’t carry on a conversation about my medical history AND also breathe.  Since I’m no Brad Pitt, without those jokes I was again, “running into the catcher.”

Anyone know a good Dry Cleaner?

The ER head physician was also familiar with my case and if memory serves me well, she didn’t know what to do for me since an apparent well-known pulmonologist at the hospital who was the on-call pulmonary specialist that evening had already deemed my lungs as being FINE.  (My luck, this was the dry-cleaner. I was not impressed, or in agreement, with his conclusion and I respectfully made that known from the get-go.  After all, it was counter-intuitive to think I did not have a respiratory problem when I couldn’t breathe and my heart had checked out just fine.)  Thankfully, routine ER flat x-rays showed something strange in my lungs and despite the cost to the hospital of performing a CT Scan on me and the associated blow to the dry cleaner’s ego, they had to perform more diagnostic tests to confirm the dry cleaner’s diagnosis that my respiratory system was just fine and that my inability to breathe was being caused by some other medical problem.  As I also recall, the cardiologist I had seen suggested that I be tested for a Blood Clot in my lungs due to the recurrent Pneumonia I had been dealing with so that test was also conducted.

The Definitive May, 2011 BOOP CT Scan

It was a rather intense and long emergency room visit but when the CT scan results came back I went from being some pain-in-the-ass patient to what they were referring to as a VERY SICK YOUNG MAN.  I knew that because I looked at my patient chart and saw that written in one of the margins.  If I only knew who wrote it I would have demanded an explanation and fired that doctor but I was unable to do so.  Based on the physician personalities I had to deal with, it could have been one of five doctors.  I didn’t think it was very compassionate to write such a mendacious statement which would affect the opinions of all health care professionals who would subsequently read my patient chart.  But I also knew I was perceived to be very sick because they had now formally admitted me to the hospital.  Having finally found some peace and quiet in my own room, I had briefly fallen asleep only to be woken up by a small army of doctors surrounding my bed, which included the infamous dry cleaner.  His face was located within striking distance of my left foot and I felt like doing a “Karate Kid” on his face but an authoritative thoracic surgeon sharpened my focus to eye level when he said he needs to perform lung biopsy surgery on me ASAP while I am still breathing and not on a Ventilator.  Huh?

The Journey to the Correct BOOP Diagnosis Begins

He was very nice and I liked him immediately even though he told me I might have lung cancer.  I’m funny like that; I evaluate “new” people by their sincerity rather than by the content of their dialogue.  I believe in the old adage to only believe what you see and not what you hear.  I also won’t play poker with a guy named “Doc” and I won’t eat at a joint call “Mom’s.”  I look for “tells” that might come in handy later.  Anyway, this thoracic surgeon explained to me that they saw a great deal of damage in my lungs and needed to find out what was going on so they could devise a treatment plan.  Normally they would simply perform an endoscopic-type procedure called a bronchoscopy and go in through my mouth but in this case they needed larger biopsy sizes and the doctor again explained that I might soon be on a ventilator so they needed to formally operate.  That word “ventilator” kept coming up almost as if they were talking about someone else.  All they while, the dry cleaner was nodding his head in approval of everything said by this erudite and experienced thoracic surgeon and I felt like looking at him and saying, “Really?  Where the “f**k” was your diagnosis when I presented at your office not being able to breathe and talk at the same time yet you deemed me fit as a fiddle?”

Patient Engagement kicks in

Instead, my brain woke up and I engaged the thoracic surgeon in an intellectual discussion about how I came into the hospital with Crohn’s Disease but now might have Lung Cancer having never been a smoker?  He then started asking me if I had ever been a coal-miner or if I had lived in certain parts of Ohio and it began to feel like I was being PUNKED.  Back then I was an Entertainment Attorney and a Film Producer and the closest I had come to a coal mine was watching a documentary about one on TV.  He apologized for the grim nature of his questions but he explained that they suspect I had “foreign materials” in my lungs and they had to figure out how that happened.  That’s when I recalled all the Humira Black Box Label Warnings and I knew I needed to somehow get my NYC Crohn’s doctor into the conversation.  When I brought up the possibility of the Crohn’s drugs possibly contributing to whatever lung problem I had, that’s when the dry cleaner decided to speak and he incorrectly, but very confidently, explained that one thing had nothing to do with another.  I just smiled because it beat crying as I knew dealing with this problem was going to be two-fold.  That is, I was going to have to deal with the medical problem AND I was going to have to obtain my medical care from a pulmonologist who understood this connection and I assumed finding that person was going to be difficult to do.

The Lung Biopsy Surgery for BOOP

The lung surgery went fine but the post-operative debriefing with me was surreal.  I did NOT have Lung Cancer but the thoracic surgeon admitted to me that he had seen damage to my lungs he had never seen before and he had been operating for MANY years.  I admired his candor and liked him even more for being straight with me but I was worried.  Again, there were at least 8 doctors surrounding my bed and the conclusion they were prepared to make, subject to clarification of the biopsied parts of my lungs being confirmed by a Pathologist, was that I had a rare form of Pneumonia called “Bronchiolitis Obliterans with Organizing Pneumonia,” better known by its acronym, “B.O.O.P.” Once the word BOOP came out of the doctor’s mouth I could tell by looking at the faces of the other doctors that they had never treated a BOOP patient before and were only familiar with it from a textbook.  My suspicions were confirmed when the dry cleaner said to the bagel store owner (another clueless pulmonologist at my bedside) that 40 mgs of Prednisone for one year should do the trick.  Given my vast experience unsuccessfully taking 40 mgs of Prednisone for my Crohn’s Disease and my substantial difficulties breathing, I remember thinking, “That might work for his dog, but it was not going to work on me.”

The Post-Operative Discussion & firing the Dry Cleaner

As the discussion continued and I began to absorb my new reality.  It felt as if my head was swirling around 360 degrees because I am quite familiar with Prednisone and its myriad of side effects from my Crohn’s Disease and being on it for a year would be catastrophic in so many ways.  Further, Prednisone never seemed to work on my Crohn’s Disease, as demonstrated by the high number of surgeries I had to endure, and I was equally perplexed by the relatively low daily dosage of 40 MGs because that dose never worked for me when I had inflammation in my small bowel and here I was not able to breathe and talk at the same time so I asked for an explanation.  The straight-shooting thoracic surgeon explained there was a mathematical formula to figure out the daily dose and then the overall dose would be carefully weaned down in calendar quarters over the course of said one year.  But he then acknowledged that given my medical background, my Crohn’s Disease, an already compromised immune system and an ineffective history with Prednisone, 60 MGs was, in his opinion, the more appropriate daily dose.  He them tempered that opinion with a declarative statement that he would not be “treating” the BOOP but the gentlemen standing around my bed would be and therefore it is their call.

Confronting the Doctors who didn’t LISTEN to me

I thanked the thoracic surgeon but said he was not entirely accurate because I want the dry cleaner out of my room and off my case because he will not be treating me.  That pretty much set the stage for my relationships with the NJ pulmonologists who had seen me to-date and who had completely missed this BOOP diagnosis.  Please understand that missing a diagnosis never bothered me if I felt the doctor was trying to help me.  Even mistakes don’t bother me if the intent was to help me and I am not too badly damaged as a result.  In this instance, however, I was seriously annoyed at the callous manner in which my symptoms were ignored by each of these doctors.  It was as if they knew better but chose to rely on statistics that given my NY/NJ/LA  background, I couldn’t possibly have BOOP or “foreign materials” in my lungs.

But with my history with Crohn’s Disease, Biologics and the FDA’s rather pronounced Black Box Label Warning for Remicade, Humira and Cimzia, they should have been asking me different questions when I first presented at their respective offices and/or in the emergency room with repeated serious bouts with Pneumonia.  In my experience of almost 30 years with an autoimmune disease like Crohn’s, I have built up tremendous credibility with doctors because I know my body and I don’t like being sick.  Yet, because BOOP is so “rare,” these NJ pulminologiosts just assumed I was crazy or somehow seeking attention.  Now I had the opportunity to vent my frustration with them and for the purposes of going into battle with BOOP with a a sound mind I felt it necessary to share my disappointment in them, with them.  Much like a star basketball player “playing” the refs in one game anticipation of his next more important game or series, I was also doing this to ensure that I would be treated differently going forward.

Besides, in my mind I was already at the Lincoln Tunnel on my way to see my trusted NYC Crohn’s doctor so he could get in the loop and recommend a NYC pulmonologist who he could work with in getting me through this most unexpected of nightmares courtesy of the combination of my Crohn’s Disease, Abbott Laboratories, Humira and the FDA.

My NJ Pulmonologist – Personality & Bedside Manner of a Handball

It took a few days to heal from the lung surgery and it was VERY PAINFUL so all I could do was have people make phone calls for me to my NYC doctor since I could barely speak.  As soon as I was strong enough to get into NYC, I met with him and he gave me the name of a female NYC pulmonologist and I made a projected appointment with her while I followed the directions of a different NJ pulmonologist (i.e., the “bagel store” owner from the NJ hospital who also surrounded my hospital bed but only listened to the thoracic surgeon share his findings so we never actually spoke while I was hospitalized).  As I was to find out after consulting more closely with him, he had a passive-aggressive personality and not only did he NOT acknowledge the connection between my Crohn’s, having taken Humira and developing BOOP,  but he had the personality and bedside manner of a handball.  Clearly, I had no palatable options at the time so I tried to stay positive while I battled a possibly life-threatening condition with the hope that my NYC doctors would figure out the best solution to my problem.

Notwithstanding this doctor aggravating me to no end with his lack of confidence in anything I contributed to the conversation, but his patronizing and passive-aggressive style of feigning listening to me was insulting my intelligence.  Yet, I knew there was nothing to do but take the 60 MGs of Prednisone until I was better situated with a NYC pulmonologist who would collaborate with my NYC Crohn’s doctor.   So, I just feigned my interest in his every word but just made sure he never deviated from the 60 MGs of Prednisone protocol.   I was approximately one-month into the 60 mgs of Prednisone regiment when my appointment with the NYC pulmonologist came up.  Coincidentally, this prickly and rude NJ pulmonologist managed to insult my mother so disrespectfully during one of my last appointments that I stopped him from talking about me (she was temporarily out of the room) and respectfully requested that he apologize to my Mom upon her return to the room.  He looked at me like I had just delivered his lunch and was asking for a $100 tip.  Accordingly, he blew me off yet I persisted.  He apologized to her. At that moment of his patronizing apology to my Mom, I put all my trust in the NYC pulmonologist who I hadn’t even met yet.  If my NYC Crohn’s doctor recommended her, she was going to be good enough for me.

The Concept of “The Second Opinion” – it’s like the Seinfeld “Reservation”

Having already made up my mind that I had to change doctors, I told this NJ Pulmonologist  that I was getting a second opinion in NYC and there was a good chance I would stop seeing him because I needed a doctor to work with my NYC Crohn’s doctor and he clearly did not believe in that Crohn’s Disease connection.  I was trying to be as non-confrontational as possible but then he did something I have never seen a doctor do up until then, or since.  He asked me if HE could talk to this NYC pulmonologist BEFORE I SAW or SPOKE TO HER so he could bring her up-to-speed.  His suggestion was so bizarre that it caught me off guard but my instincts formed words and they sounded very much like this:  “Doctor, the whole point of getting a Second Opinion is to seek objective input into a situation that would benefit from ANY additional clarification.  Therefore, any communication between you and this potential new NYC pulmonologist would taint her perspective and put me back at square one under your care, and with all due respect, I no longer want to be under your care.”

Then I smiled as I caught myself since I had revealed that he was actually being territorial about me being his patient.  Did he really care about me or did he just not like to lose patients?  I wished the former but knew it was the latter based on his actions, especially the way in which he treated my Mom.  Then I got annoyed at his passive-aggressive approach and I explained to him the example the comic Jerry Seinfeld uses when describing the concept of the “Reservation.”  I was trying to lighten up the moment so he would drop it but he actually took me serious and said he watched “Seinfeld” and asked, “What was I referring to?”  I just laughed and firmly told him he is NOT to contact this NYC pulmonologist (as I had already given him her name).  He then seemed to admit “defeat” and said I will need to get all the films and reports organized so that the NYC pulmonologist could make the most informed decisions “and that could take a while,” as if he were rooting against me making any progress by going to see a NYC pulmonologist.

I sarcastically told him his “negativity and clear interest in my best medical interests are duly noted” but I had already complied each and every diagnostic test including the films, reports and all the blood work.  He looked at me as if I had just run the 4-minute mile in Clogs.  He apparently was so accustomed to being “in control” that he was amazed a patient actually asserted himself.  I genuinely thanked him for his help up until that point but did tell him that our personalities did not mesh and I need them to, in order to be treated, especially to take on a battle like this one.  I then left him and his God-complex for some Pizza joint as being on 60 MGs of Prednisone for one month is like being pregnant.  You eat, what you want to eat, when you want, and where you want.

Meet my NYC Pulmonologist

I very much liked the NYC Pulmonologist and from the get-go she and my NYC Crohn’s doctor were on the same page regarding the BOOP having a significant tie to my Crohn’s and the Humira or other Biologics.  I tend to see Humira as the primary culprit of my respiratory problems because I was an avid athlete all my life until I started taking Humira.  It was also during the time on Humira that I began to be hospitalized like a 90-year old for what should have been simply bedridden Bronchitis events.  In any event, the only known effective course of treatment for BOOP was the 60 MGs of Prednisone for one year tapered over calendar quarters, so there wasn’t much for this new NYC pulmonologist to do other than monitor me but there was something about her bedside manner and genuine care for my plight which simply made me feel good.  This intangible quality would become incredibly significant because after a few months on the Prednisone my body began to deteriorate even further.

For example, I contracted a serious case of regular Pneumonia for which I had to be hospitalized twice and I also had Pleurisy for which the pain was “off the charts.”  Luckily, I’ve seen a well-respected Pain Management Doctor for several years due to all of my medical maladies and he was able to control my pain.  It wasn’t just the Pleurisy; it was the contrasting feeling that the pressure of a Piano was always on my chest when I tried to breathe and occasionally I would get dagger-like pains in my lungs from the Pleurisy. With the Pleurisy, the daggers became unmanageable, even with medication. The Prednisone’s typical but myriad of side effects also caused extreme joint pain and by the fourth month I had gained 45 pounds so everything was intensified.

The Turning Point – August, 2011

Throughout the entire time, the NYC pulmonologist stayed in close contact with my NYC Crohn’s doctor and my blood count was monitored routinely.  But, when I got regular Pneumonia after four (4) months of being on such a high dose of Prednisone and had to be hospitalized in NYC for the second time (approximately August, 2011), it was clear something had to be changed as my breathing and pain were not getting better yet the side effects from the Prednisone were causing tremendous additional systemic medical problems. One night during that August, 2011 stay at Mt. Sinai Hospital in NYC, while I tried to fend off the Migraines caused by the Prednisone to get some sleep, the NYC pulmonologist stopped by to check up on me.  I was VERY frustrated with my lack of progress battling the BOOP and the massive dose of Prednisone was playing games with my mind.  This prompted me to ask the doctor if there was anything else I should be doing?  I personalized the situation and asked her, what she would do, if she were me?  She replied that the ONLY thing I hadn’t done, which she would do, was obtain the actual Biopsy Slides from the New Jersey Hospital where the lung biopsy was performed so that the Pathology Department at Mt. Sinai Hospital could render a second opinion.

She even offered to make a few phone calls on my behalf to get the ball rolling since my lung power would be exhausted after making just one phone call.  In that regard, she came back the next day with the information I needed and even though it was going to be VERY EXPENSIVE, I had to do it because it didn’t make scientific sense that my body wasn’t responding to the Prednisone given the clear BOOP diagnosis.  Although, some people don’t respond to the steroid treatment and they either die or the BOOP becomes chronic.  I wasn’t crazy about either option but I was intent on doing all I could to help the doctors, help me.  But it was going to take a few months for the actual slides to be transferred and reinterpreted so my actions would not reveal any beneficial information for quite a while.   This is when the doctors brought in a NYC oncologist because they were trying to figure out if a different class of drugs would work on my BOOP, which I was told was a “T-Cell” disease.

Histoplasmosis Test

My 30-year NYC Crohn’s doctor also had me tested for the often fatal Lung Fungal Infection, Histoplasmosis, just to ensure that EVERYTHING possible was being tried to help me.  It turned out to be a simple Urine Test but it took my doctor quite a while to figure that out from a very challenging case he had a year before mine.  This is why I am always so open about my medical challenges as Crohn’s Disease and its treatments can cause some hard to identify medical problems and I want doctors and patients to LEARN from all I must go through.  To that end, I am thankful to that patient who essentially “taught” my Crohn’s doctor what to look for in case of Histoplasmosis.  Thankfully, he survived and was diagnosed and treated in time.

My foray into Chemotherapy and Cytoxan w/ the RIGHT Doctors

Since my NYC Crohn’s doctor knew me so well for 30 years, it was his decision to discontinue and wean me off the Prednisone as fast as was medically safe to do so.  But at the same time he organized a “sit-down” with the NYC pulmonologist and the oncologist and they decided to try a several month course of monthly infusions of a chemotherapy drug, “Cytoxan.”  While the mere word “oncologist” scared me, I also very much liked this oncologist and I also understood why they were considering the Cytoxan after they explained the “T-Cell” analogy to me.  Since I trusted the three (3) doctors with my life, there was no decision for me to make as they made it for me.  I think I learned during the 2011 BOOP ordeal that the best advocate a patient can be for him or herself is in selecting the “right” doctors for him or her.  That doesn’t always mean the “best” doctors but it should always be the doctors best suited to the patient/person and to the task at hand.

I was so sick that I needed some degree of autonomy since I was too ill to be involved on a day-to-basis.  The combination of a Crohn’s Disease expert who knew me for almost 30 years, a compassionate Pulmonologist who understood the systemic connection between my Crohn’s and the BOOP and a very experienced Oncologist who also had worked closely with the two (2) other doctors rounded out a medical team whose sum was much larger than its parts.  I had no time to search for the “best;” I only had the energy to find a core of caring and creative doctors who would listen to me and observe how I responded to each and every treatment. Having achieved that, my work was completed.  I was in their hands and that made my responsibilities going forward very simple.  I just had to be positive and “open” to healing.   The only concern they had was of the unknown side effects the Cytoxan might have on my Crohn’s Disease but since I couldn’t breathe, was in tremendous pain and was having difficulties staying positive about my future, I just did what I was told.  “Damn the Torpedoes” as Tom Petty might have told me.  I then had the first Cytoxan infusion while hospitalized at Mt. Sinai Hospital and was released a few days later once the Pneumonia and Pleurisy were improving.

Perspective – A Patient Tool for Healing

I was soon off the Prednisone and had my second Cytoxan infusion in the office of the NYC oncologist.  He also tested my blood count regularly and I was starting to improve.  Before the second infusion of Cytoxan, I had to mentally map out a plan to try and breathe if I was able to get off the couch and walk 15 feet to the kitchen.  However, a week or so after the second infusion of Cytoxan, breathing wasn’t always on my mind because it was gradually getting back to its “new normal.”  This got even better a week or so after the 3^rd infusion but then I started to get severe Crohn’s Disease pain and actually had a dangerous small bowel obstruction for which I again had to be hospitalized at Mt. Sinai Hospital in NYC.  This is when I knew my “perspective” had to be altered because I had dealt with MANY Crohn’s Disease situations and will likely have to deal with many more in my lifetime but not being able to breathe was something which could have killed me so I tried to look at my situation as a lucky one, albeit with some Crohn’s complications.

Dueling BOOP Pathology Reports

I don’t recall if this hospitalization at Mt. Sinai was after the 3^rd or 4^th infusion of the Cytoxan but it was during this hospitalization that the Pathology Department at Mt. Sinai Hospital had finally received the Lung Biopsy specimens/slides and had issued a written pathology report.  On the day I was to get the next Cytoxan infusion, which would have been my 4^th or 5^th, the NYC doctors came into see me and told me they had to discontinue the Cytoxan because the Pathologists at Mt. Sinai Hospital did not entirely agree with the opinion of the Pathology Department at the New Jersey Hospital which had initially diagnosed me with BOOP.  More specifically, and it really was a hyper-sensitive analysis, the pathologists at Mt. Sinai Hospital agreed that there were nodules or particles of BOOP in my lungs but not enough to mathematically classify my condition “as BOOP.”

On the one hand, me and my doctors were not very “affected” by this differing analysis because the administration of the Cytoxan had CLEARLY gotten my lungs better when the traditional form of treatment for BOOP (i.e., 60 MGs of Prednisone for 1 year) was ineffective and caused me so many other serious systematic medical problems for which I had to be hospitalized.  But not knowing exactly how far I had recovered from the BOOP, especially since it can be chronic and come back, as it has now in 2013, I wanted at least one more infusion of Cytoxan but the NYC doctors concurred in their opposition given the new Mt. Sinai Hospital Pathology Report, my obvious improvement from the Cytoxan and with all due consideration and respect for the potential toxicity of the Cytoxan such that giving me any more than just the right amount would be increasing the risk of systemic harm to my body.

Let me put it this way:  You know you have a complicated medical problem when you engage very smart and well-intended physicians into a discussion where you are essentially begging them to give you MORE chemotherapy because you want to make sure you fully treat a very dangerous lung condition so that it doesn’t come back.  They listened, I listened, but in the end it was their decision and my breathing was SO MUCH BETTER that I  mentally embraced their decision and start focusing on my Crohn’s Disease small bowel obstruction.  At that exact moment in time, the episode of BOOP, or whatever it was, was over in my mind and I was transferred to the floor at Mt. Sinai Hospital which was exclusively for Crohn’s, Colitis and Inflammatory Bowel Disease (“IBD”) patients.  Even without the actual physical transfer from a pulmonary floor at Mt. Sinai Hospital to a Crohn’s Disease/Inflammatory Bowel Disease floor, I had to make that “transition” in my mind because now I had to contend with some very serious Crohn’s Disease issues and I wasn’t going to be given any sympathy just because I had just somehow navigated my way out of a very dangerous Lung Condition thanks to the knowledge, talent, experience and sheer determination of three (3) very smart physicians.  This was approximately November, 2011.

Medical Background Epilogue

The BOOP and my Lungs were manageable although the capacity of my lungs was clearly limited or damaged either by the episode of BOOP, cumulative damage from the BOOP and/or damage from taking the chemotherapy drug, Cytoxan.  The Crohn’s Disease problems got much worse and I was still going medication “commando” as there was no medication I could take to treat the Crohn’s now that all Biologics were off the table for me.  Long story short, after MANY diagnostic tests in close consultation with my NYC Crohn’s doctor, we found a new Crohn’s Disease surgeon who looked at all the tests, was not at all intimidated by the complexity of my case and he used the tests to map out a surgical strategy that would judiciously treat the diseased parts of my small bowel and also excise all adhesions that were adding to the small bowel obstructions.  It, just like the BOOP episode, was VERY complicated but this new surgeon operated on me in June, 2012, when I stayed at Mt. Sinai Hospital for Seventeen (17) days.   Most people have 21 feet or so of their small bowel but after this last 2012 surgery, I now have only 6 ½ feet.  That “short bowel syndrome,”  in and of itself, causes many absorption and lifestyle challenges but at least I can still eat and I don’t have any sort of stoma (or “bag” for those unfamiliar with the technical terms for such things.)

My NYC Crohn’s doctor thinks the Crohn’s Disease issues may have been exacerbated by the 3-5 monthly infusions of the Cytoxan I took to “beat the BOOP” but he doesn’t think it caused it.  We’ll never know.  However, two (2) casualties as a result of taking the Cytoxan are that my Testosterone Levels decreased to the point where they were almost microscopic.  I had to take Testosterone supplements to help boost it back up as I was experiencing EXTREME FATIGUE and a variety of “man problems.” It is still VERY LOW and barely falls within the “range” of where it should be whenever I get a blood test but all “man issues” are no longer problems.  I can’t afford the Testosterone Supplement so for now, and the foreseeable future, that is my reality.   The other casualty is that my stamina when trying to merely walk on a treadmill or taking a walk in the sun has been greatly diminished.  In fact, a few months ago I tried walking very slowly on a treadmill and I passed out and that brings us back to the road to my Nightmare March 26, 2013 Emergency Room Experience at a New Jersey Hospital as: “The BOOP is back and it’s stone cold sober as a matter of fact.”

Last night, March 21, 2013, at 9:00 PM EST, Frank Garufi, Jr. complied a “Round Table” of Four (4) people who he perceived to be amongst the leading Patient Advocacy voices for Inflammatory Bowel Disease (IBD), Crohn’s Disease and Colitis.  Frank is an incredibly dedicated and well-educated IBD Father to an 8-year old boy who was diagnosed with Crohn’s when he was approximately two (2) months old.  Since then, Frank has been on a crusade to educate himself as best and as quickly as possible so that he could be as helpful to his son as possible, both NOW and in the FUTURE.

As part of Frank’s crusade, he occupies that crucial IBD, Crohn’s and Colitis space in Google+ which many of us Advocates have yet to master.  To that end, Frank was kind enough to include me, Michael A. Weiss, in this 4-person Panel of Advocates and I was honored for that consideration.  However, I was even more humbled during the almost 2-hour IBD Round Table because I was sharing the Round Table with these Inspiring and Brave Advocates:  Christina Matthies  , Sara Ringer  and Sarah Choueiry.

What we Discussed and Addressed

We each came at the thoughtful and provoking questions and IBD issues posed by Frank from different perspectives, lifestyles and ages but we all seemed to be  opining from similar severity “spectrums” in terms of our respective IBD diseases.  That diversity resulted in a non-stop engaging discourse on all things IBD, Crohn’s and Colitis including, but not limited to, ramifications of Advocacy, opinions on how to best raise awareness of Crohn’s Disease and IBD, pain management’s role in treating the disease, how best to navigate the healthcare system to obtain the best treatment, the myriad of medical decisions which must be made by the IBD patient while compromised physically and emotionally during a hospital visit, how best to communicate with doctors, how best to offer support to fellow “Crohnies” or other IBD patients, the journey to a correct diagnosis, managing the financial woes which often accompany the chronic and expensive nature of Crohn’s, Colitis and IBD and its diagnostic tests, treatments and drugs and addressing the potentially disabling nature of these autoimmune disease.

The Therapeutic Value in candid IBD discourse

In discussing these issues, succinctly designed by Frank Garufi, Jr., we also interacted with one another in a way which I think demonstrates the broad range of coping skills one needs to successfully manage these life-altering diseases.  I think we also demonstrated the therapeutic value in TALKING about the multifaceted aspects of IBD, Crohn’s and Colitis.  Simply being able to “relate” to another IBD patient or “Crohnie” going through the same experiences left me feeling incredibly positive about future developments in IBD, Crohn’s and Colitis Patient Engagement.  If I felt that way simply discussing my disease experiences with 4 other people, I hope YOU will see how empowered that can be when YOU do the same, whether in a health care social medium platform, a virtual patient community like Crohnology.com or in real life with a close friend, colleague or loved one.

Please Comment & Pose Questions for Next Month’s IBD Round Table

If you have IBD, Crohn’s or Colitis, or love someone who does, PLEASE watch this Video, or at least watch parts of it.  Please also note that this IBD Round Table Discussion will now be a MONTHLY EVENT on Google+.  The time and date of the next one will soon be announced and I will certainly pass it along to you.  To that end, your comments and questions are WELCOMED so that we may address them when we reconvene.  Thanks.

Below are short REAL “testimonials” which demonstrate the PASSION of these selfless Volunteers who make up the Crohn’s Disease Warrior Patrol.

I am constantly learning about myself through this disease and others with it.  If I can be of help to anyone and experience other IBDers, what a gift! – Honolulu, Hawaii

I have wanted to help others for many years now and this would be perfect!  Landsdale, PA

I feel that there is a need for this type of help to talk to patients facing a new diagnosis of IBD and Ostomy.  I would love to help in any way I could.  Mobile, Alabama

I would love to share my experiences or just listen to others vent or talk it out. Just be there because I understand & have been through most of it.  Bethpage, NY

So glad that I ran across this new program.  My CCFA support group just discussed how awesome it would be to be able to visit newly-diagnosed IBD patients, even in the hospital, as most have never heard of it and are likely “freaking out” about their diagnosis.  Niles, MI

I feel this is such a great program for people that are scared and alone in the hospital. Even if they aren’t alone, it’s of paramount importance that they talk to someone with this disease-at least that’s my opinion. Doctors and nurses can only empathize to a degree.  Greensburg, PA

Would like to sign up to be a Warrior and help those worse off than me!  Bridgewater, NJ

I would be willing to be a Crohn’s Disease Warrior (“CDW”) and visit hospitalized patients. There are a lot of us IBD’ers here. If I can help, please let me know   Waterloo, Ontario, Canada

I am very seasoned & qualified to do visits to new patients. Please let me know if I can help.  Central Michigan

I would like to go and visit Crohn’s patients in the hospital.  Fort Collins, CO but I could also visit between Cheyenne, WY, and Denver, CO.

I would Love nothing more than to give back and take even an ounce of degradation/humiliation from a fellow Chron-ee and prove it WiLL be alright!! I have been looking for a program exactly like this and I HoPE that I can help in any way!! Los Angeles, CA

I would be happy to visit, support, run errands for anyone in the hospital.  San Francisco, CA

I am a 38 year old Crohn’s patient, diagnosed 10 years ago and live in the Seattle area. First I would like to thank you for such an awesome idea! I have spent many nights in the ER or hospital room, alone and honestly I can’t even imagine being a child going through this!  Seattle, WA

I’d be happy to share my story with people recently diagnosed or ongoing patients so that they can see there is “life” with Crohn’s. It’s not always easy but I’ve learned that attitude goes a long way!  Long Island, NY

I have visited Crohn’s patients in the hospital many times to help them before or after a surgery. Just to be there to listen, talk, teach, cry – whatever it took to let them know they are not alone.  Cleveland, OH