Monthly Archives: May 2012

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

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

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

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

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

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

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

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

Talking ‘bout my Generation

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

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

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

The Evolving Physician-Patient Relationship

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

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

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

Power of hcsm to help Reform Healthcare

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

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

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

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

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

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In-Network Doctors – Quantity over Quality

Last Friday, I went for an annual Ophthalmology “check-up.”  Since my Eyes are not my primary medical concern and I’m broke from all my other medical problems, I decided to “work my health insurance plan” to find a doctor and, in the process, take my own advice.  Mind you, while Crohn’s Disease and my Gut are to me what Kryptonite is to Superman (if you have never heard of “Crohn’s Disease Man” you just aren’t reading enough comic books), my Eyes are nevertheless of vital importance to me.  Moreover, the auto-immune aspects of Crohn’s Disease have been known to affect the Eye so it wasn’t like I was going to see a Podiatrist or a Psychic and could thus roll the dice.  In that regard, I apologize to all the Psychics out there for comparing you to Podiatrists.

Tolerating “Quantity over Quality” from In-Network Doctors

More seriously, I have learned to merely “tolerate” my Insurance IN-Network Doctors based on my present experience with an Endocrinologist who has more satellite offices than he does office staff such that it takes 3 weeks to get a Prior Authorization for an MRI of my Pituitary Gland.  I am STUNNED he calls himself a Doctor and not a Medical Businessman.  I haven’t terminated our relationship yet because I’ve had a hard time finding another endocrinologist in my insurance plan who can see me within six (6) weeks and, anyway, at this point in our relationship he is merely accumulating test results and my Bookie could basically do that.  However, I will change endocrinologists when interpreting said test results becomes of paramount concern and a long-term treatment strategy must be devised.

Since I am seemingly caught in this weekly vortex of needing to be treated by one medical specialty doctor after another, I don’t have the energy to take the appropriate consumer “stand” with each disappointing health care transaction I encounter.  However, despite my medically dominated day-to-day life and the numerous disabling medical issues I must contend with, there was something so outrageous about my recent encounter with this Eye Doctor that I had to “fight back” if only to show this doctor that the BS he is pulling with other patients can’t be pulled with me (and shouldn’t be pulled with the other patients).

Do you “take,” or “participate in,” my Health Insurance Plan?

You see, I had to find an eye doctor who would not only evaluate my vision but also assess the various eye ailments I’ve experienced because of my chronic illness.  In that regard, a trusted family member of mine recommended this particular eye doctor because he was very kind to her and had solved her then-pressing medical problem so I checked to see if he was in my health insurance plan.  I was pleasantly surprised to see that he was IN FACT, an “In-Network” Physician Provider.  I point out this distinction because patients get fooled all the time when they call a doctor and ask them if they, for example, “take Green Cross of Boston Health Insurance” and the $12 an hour receptionist says, “Sure, the doctor ‘participates’ in practically all health insurance plans” or “the doctor ‘accepts’ all health insurance plans.”

You may not realize it at the time but “magic words” are exchanged between patient and medical receptionist during such a conversation and medical practices have been profiting off of the resulting misunderstanding with the same ease of off-shore oil drilling companies obtaining licenses to drill for oil under President Bush’s administration.  The medical receptionist technically said nothing wrong because saying the doctor “participates” or “accepts” all health insurance plans when asked if the medical practice “takes” a certain health insurance plan is like pulling into a gas station asking if they “take” the local town Entertainment Discount Card and expecting a great bargain if they do.  The gas station guy would say they do “accept” the Entertainment Discount Card but the rub is the extent to which he “participates” in, or “accepts,” the local Entertainment Discount Card plan.

The Financial Ramifications of Healthcare “semantics”

For instance, the gas station guy might smile and take the Entertainment Discount Card Coupon but after you fill up your gas tank for $49.00 he will come back to the driver-side window and tell you the total is $44.00.  “But I thought you ‘accepted’ the gas coupon from the Entertainment Discount Card?” you ask.  Still smiling as if he’s a regular Saturday night dinner guest at your house, he says, “I do, and I deducted $5.00 off your total, so all you owe me for filling up your car with gas is $44.00.”  That’s exactly what happens in healthcare when the words “participate” and “accept” are misunderstood.  Moreover, medical practices exert zero effort to correct patients from relying upon these magic words.  But we patients have no-one but ourselves to blame because the only phrase of any financial significance is “In-Network Provider” because then the most you can pay for an Office Visit is your “Insurance Co-Pay.”  With my current insurance policy, that is $30.00 for an “Office Visit” and $50.00 to see a “Specialty Doctor;” however, I have yet to see an Office Visit which they classify as anything but an office visit with a “Specialty Doctor.”

Having been burned many times before by the aforementioned health insurance “take/participate/accept” semantic BS, I was legitimately impressed that my Health Insurance Plan had this particular Ophthalmologist in its Provider Network of Doctors given the rave reviews he had received from someone whose opinion I respected.   Since my Co-Pay is $50.00 to see In-Network Specialty Doctors, I was going to get a full Eye Exam and Overall Consultation for no more than $50.00.  Looking back on it, I should have realized that when something sounds too good to be true, it invariably always is.  There are a few exceptions to this age-old axiom but you usually wind up marrying them and I have yet to be so lucky to meet the woman of my dreams. In any event, when I walked into this new Ophthalmologist’s office last Friday what I encountered SO DISTURBED ME that after the Office Visit I decided to ask for my money back.

How to be a Medical Patient Consumer

Rather than bore you with additional details as to why I felt so ripped off as both a Patient and a Consumer by this Ophthalmologist, I have pasted below the EXACT Fax I sent to him on the following Monday, which he responded to within one (1) hour by reversing the $50.00 Co-Pay charge to my American Express Card.  In short, I felt like a patron at a trendy restaurant with a Server who starts walking away from me while I’m still ordering as if he knows how to complete my sentences and what I want for dinner that evening.  The Server seems more interested in maximizing his tips by “turning the table over” rather than in ensuring that I have a pleasurable experience.  In the restaurant setting, I can tolerate such behavior because I don’t have to jump through too many hoops to find the joint and after all, it’s common to have a “one-off” experience.

If I wind up having a bad consumer service experience, I’m also always aware of the “buyer-beware” credo and I can easily “complain” by never going there again.  I can also tell all my friends about how rudely I was treated and I can even write a scathing Yelp Review or share my bad experience on some other social media platform.  These common sense remedies notwithstanding, I think it is just as important to take the time to compliment a new restaurant or business via these same consumer tools when the experience is positive.  We all seem to have more time to complain and protest to get our money back than we do to compliment or praise a business or service when it provides exactly what it advertises.  That’s just human nature and when we spend our hard-earned money and in return get a bad experience we tend to be more “motivated” to do something about it even if that is to simply ease our minds.  But I do try to keep my complaints and compliments in balance and I think my Yelp profile can attest to that.

But these consumer remedies are not as effective when it comes to our Health because there’s simply too much subjectivity involved with the healthcare transaction and the “time spent” vs. “proper treatment received” quotient doesn’t leave much room for a grave error or a disconnect.  Accordingly, while an arrogant abrupt physician to some can simultaneously be touted as a highly skilled and confident physician to others, the time invested in developing a new doctor-patient relationship gone wrong can feel like the most squandered of wasted time.

“Quantity over Quality” In-Network Doctors with some Exceptions

Ironically, in the middle of writing this Post I went to see an In-Network Surgeon for a Consultation as I need rather serious surgery to repair Crohn’s Disease-related damage in my Intestine.  It may have been the most thorough examination I’ve ever experienced as this doctor focused on me and my case until he and I were both satisfied that we had all of our questions answered.  By agreeing to operate on me, he was telling me that my problem was now his problem and I left his office SO relieved.  Perhaps it was the combination of the precise nature of his surgical specialty and the seriousness of my surgery which warranted such individualized treatment, but I have found the recent increase in Insurance In-Network Doctors clearly creating a “quantity over quality” atmosphere.  I can only imagine this trendy restaurant-like atmosphere to be a byproduct of the unreasonable provider reimbursement amounts and the allotment of shorter and shorter patient time constraints placed upon them by both our overall healthcare system and by the rules of being an In-Network Provider; the Network of which many Provider Doctors are forced to join simply for cash-flow purposes.

“Turning over patients” seems to be the name of the game in these types of practices.  It is quantity over quality; “LA” instead of New York City; Kathy Griffin over Louis C. K.  The question then becomes:  What to do about it?  I decided to articulate my grips in a respectful letter to the aforementioned Ophthalmologist asking for my money back and in the process I hoped he “gets it” so that the quality of the medical services he renders to other patients in the future gets better.  Below is that redacted copy of the fax I sent him [underlined and bold emphasis left in].

The Redacted Ophthalmologist Letter seeking Refund

As an experienced Patient, and a complicated one at that, I was deeply disappointed in the Ophthalmology medical services you provided to me on Friday, ————, and as I result I am reversing my $50.00 ——————– Insurance Co-Pay Charge with American Express (if charged; if not yet charged I am respectfully requesting that you do not do so) and I respectfully request that you mail to me my Medical Records you and your staff generated on ————-.  My address is —————————————————————.  Thank you for your anticipated cooperation.

For the sake of explaining my actions and for the purposes of hopefully preventing this from happening with other patients, set forth below are my  specific Complaints.  In summary, I just need my Doctors to be reasonably thorough and reasonably comprehensive given how pervasive my Crohn’s Disease has been and you clearly were not.  But, it is nothing personal.  Candidly, I think it is a byproduct of the ridiculous and unreasonable time constraints you are placed under by Health Insurance companies which in effect unfairly place your emphasis on “turning over patients” like waiters in a trendy restaurant instead of treating each patient with the time and focus warranted by each individual patient and case.  Nevertheless, I need more attention focused on the health of my eyes given that my Crohn’s Disease has already had a significant effect on my eyes.  In that regard, I must now see another Ophthalmologist for the same reasons I went to see you and therefore I would appreciate you not charging me for the ————————— Office Visit/Exam or not contesting my reversal of said charge when/if it appears on my American Express Card.  Thank you for your anticipated cooperation.

The Specific Patient-Consumer Complaints

  • I completed your New Patient forms in reasonable detail explaining the Cataract Surgery, Eye Sores, Extreme Crohn’s Medication Side Effects and Dry Eye I have experienced as a result of my Crohn’s Disease yet you merely confirmed the Left Eye Cataract Surgery and told me I have a Cataract in my Right Eye but that I shouldn’t worry about it.  That gave me no gauge whatsoever as to the status of that right eye Cataract considering that my Los Angeles, CA Cornea Specialist told me 3 years ago that I must watch that right eye CAREFULLY.  You did not even inquire about the eye sores or the Dry Eye and both are often symptoms of Crohn’s Disease and in my case they were so EXTREME to the point where I had CUTS in my eye that were so painful I almost had to be hospitalized.  As for the Dry Eye, I had some type of ducts inserted into each eye yet you did not inquire about Dry Eye AT ALL.
  • I spent more time with your cordial Vision Technician than I did with you and that concerned me given the complexities explained above and given my current exacerbating problems regarding Reading up-close.  I was worried that my chronic illness might be somehow affecting my vision (as my Crohn’s is apparently active and wreaking havoc inside my Intestines as I am awaiting a surgical date to have FIVE (5) Strictureplasties performed on me) yet I was “run through the mill” that you have established at your practice and while that may be perfectly fine for normal patients it doesn’t work for me.  I also asked this Vision Technician several questions which she had no answer for and I also had to remind her several times to check the prescription on my Sun Glasses as I was not sure when I had them made.  She was very nice and professional but she went through my exam like she was completing a checklist fixing a car’s Transmission rather than treating ME as a Patient.  I don’t blame her at all; I have no one other than you to blame because she should not be placed in a position to answer questions which necessitated answers from an Ophthalmologist.
  • When you gave me the eye exam and I complained that my right eye was VERY blurry from the dilation eye drops yet my left eye seemed fine, you said I shouldn’t worry that the vision you were demonstrating for me in that right eye wasn’t the best possible vision I could achieve with a prescription.  To that end, I still don’t understand how you were able to almost perfect the vision in my left eye with the manipulation of the different lenses in that machine but never came anywhere close to providing me with decent vision in my right eye.  Considering I have a small or “beginner” Cataract in that right eye, have experienced all of the above related to my Crohn’s Disease and what I set forth in the New Patient Forms, your answer to my repeated question about this was unsatisfactory.
  • I also told you after you were done examining me that I was having serious problems reading the newspaper and you told me that you were surprised by that statement based, I imagine, on the eye examination you had conducted.  Then, in response to my statement and in an attempt to help me, you had me go back to the prescription “machine” and you held up a sign close to the machine for me to read to test my reading vision.  However, your hand was not steady and the sign moved and that just added another variable to figuring out what my correct reading prescription is because I couldn’t focus on the answers to your questions regarding what was on the sign but you did not seem bothered by it.  You then put the sign down and changed my reading glasses prescription.  I asked how you knew what prescription to write and you simply answered: “I made your reading glasses much stronger.”  ????  With all of the complexities that must go into figuring out the correct eye prescription, what does “much stronger” mean and how did you arrive at that exact prescription?  Moreover, had I not insisted that you please make sure my reading vision was optimized; you would not have changed a thing.
  • I asked you about the right eye Cataract and again you gave me a “wishy-washy” answer by telling me “not to worry about it.”  Given the almost 20 major surgeries and 200+ hospitalizations I have experienced due to my Crohn’s Disease, I must worry about it because what can go wrong with respect to my health, always seems to go wrong.  This is all not even mentioning that I developed, and had surgery for, a Cataract in my Left Eye in July, 2007, when I was 44 years old and was told it was directly due to my Crohn’s Disease because I was too young to be developing a Cataract.  I was also told at the time that I had what appeared to be a Cataract in the right eye but that it was too small to operate on – at that time.
  • Then you walked out of the Exam room leaving me on the chair and I thought you were either coming back in or having another vision technician come in as I still had questions regarding the prescription to my Sun Glasses.  Then, after waiting a few awkward minutes in the exam room chair, I walked out of the exam room and asked someone to check my sunglasses.  The Vision Technician who had conducted a variety of tests on me was kind enough to take them from me and she then checked them.
  • I also recall always having drops placed in my eye to reverse the dilation drops because my eyes are SO SENSITIVE to Dry Eye and whatnot but that was not done and I forgot to ask.  As a result, I had trouble seeing clearly for at least FOUR (4) hours after I left your office.

Dr. ——–, I could go on and on but it is not my intention to be unreasonable or vindictive.  The whole experience simply reeked of an office trained to “turn over” patients rather than to TREAT THEM and I cannot entrust my health and well-being to such a Doctor.  That said, I am acutely aware of the harsh realities of our current healthcare system and I do sincerely understand the ridiculous reimbursement and time constraints you are up against but nevertheless I do hope you take this letter in the spirit in which it was written.  That is, to explain my actions and to provide you with some feedback so that you can make some changes to provide a better quality of care to your future patients since you certainly seem like a smart doctor with the best of intentions.  Additionally, I do not think it is fair that I should have to pay for my eye exam with you since I must now go to another eye doctor for the same thorough and comprehensive eye examination I was seeking.

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Crohn’s Disease is “NFL-Tough” according to Matt Light, retired NFL Offensive Lineman

When Matt Light of the NFL’s New England Patriots announced his retirement this past week, he also disclosed for the 1st time that he has been suffering from Crohn’s Disease for the past 10 years.   He described his battles with Crohn’s Disease as extremely painful and ugly, with pain so bad it was often paralyzing.  In fact, a 2004 surgery to remove 13 inches of his intestine combined with post-operative complications landed Matt in the hospital for 30 days during which his typical NFL Offensive Lineman weight of 316 fell all the way down to 260.  Yet, through it all, Matt persevered and appeared in Five (5) Super Bowls protecting Quarterback Tom Brady and winning three (3) of them.  Matt Light’s candor and brave account about how painful and serious Crohn’s Disease can be should go a long way toward raising the public’s awareness of this often pervasive, debilitating, painful and incurable chronic illness.

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What to ask before your 1st Crohn’s Disease Surgery

The Power of Crohn’s Disease

As a 49 year-old battling Crohn’s Disease for almost 30 years, people always ask me two (2) things:  1. What is so unique about Crohn’s Disease which makes surgery such a last resort?  2. Why has it been necessary for you to be hospitalized over 200 times for treatment of Crohn’s Disease?  The answers to these two (2) questions set up a foundation of knowledge that every Crohn’s patient should acquire so they are properly equipped to most effectively interact with their surgeon during that 1st surgical consultation.  But before I share advice about what to ask your surgeon before your 1st Crohn’s Disease surgery, I think it is also important to understand the disease, its possible progression, its medications and its potential effects on your life.  That’s why I’ve chosen to write this “advice article” from a story-teller perspective.  After all, surgery is surgery but there’s nothing quite like Crohn’s Disease.

Experienced Crohn’s patients are not Doctors but for what we must go through with the disease, we might as well at least have some type of Honorary Medical Degree! To that end, Crohn’s Disease forces each of its patients to learn a great deal about his or her respective “type” and intensity of disease since Crohn’s can affect one person mildly yet another so severely that he or she can be disabled.  There is no medical explanation for this wide and diverse range of brutality. Moreover, these mild vs. severe flare-ups and overall Crohn’s classifications can inexplicably go away over time or they can exacerbate.  The auto-immune element of Crohn’s can also introduce other chronic diseases and conditions into the patient’s situation and these Crohn’s “related” medical problems can be more debilitating than the vice-like grip Crohn’s itself often has on the life of its patients.

When you also consider the life-threatening and life-style altering side effects of some Crohn’s Disease medications, the potential severity of the disease really comes into focus. Like many other Crohn’s patients, I have come to experience it as a disease which has a mind of its own whose main attributes are unpredictability and in-curability.  How can a person plan a life around such an often pervasive disease which causes debilitating and painful flare-ups the timing of which are unpredictable? Oh, and the underlying disease is incurable? There are many more dangerous and debilitating diseases than Crohn’s Disease but few feast on a patient’s physical, mental, psychological, emotional, financial, professional, social and familial well-being as much as Crohn’s Disease.

 A Correct Diagnosis of Crohn’s Disease

Assuming you are accurately diagnosed and manage to dodge the months or years of being misdiagnosed with people close to you thinking you are crazy for trying to associate together seemingly unrelated symptoms as if they are all a part of one horrific and existing disease (which they are, and the disease is called Crohn’s Disease), you’ve ultimately found “the” gastroenterologist who fits your needs, personality and lifestyle.  During the first few years, under normal circumstances you would have likely been under medical treatment for a variety of Crohn’s symptoms that occur when your body’s immune system is ill-equipped to fight off inflammation.  In fact, when posed with the task of fighting inflammation, your Crohn’s Disease somehow confuses your immune system and causes it to attack itself instead of the inflammatory intruder.  This sounds like fodder for an old Jerry Lewis Comedy but the practical medical effects of this bizarre immune system malfunction make Crohn’s Disease potent and pervasive.

Despite the possible serious manifestations of Crohn’s, your gastroenterologist will start you off with the most conservative medical treatment and then gradually move you up that scale as your condition warrants.  But as you know, your condition may forever stay at that very treatable level or it can get rather aggressive like mine and that’s when your doctor has to move to more “systemic” medications or eventually have you consult with a surgeon about surgical intervention.

Crohn’s Disease Recurs which tends to negate Surgery

In answering Question 1 above, it’s important to understand that Crohn’s Disease tends to “recur” in that, by way of example, having surgery to remove 4 inches of diseased small bowl intestine might solve your pressing medical problem but the mere act of surgical intervention could start the need for continued removals or surgical repair of additional small parts of small bowel intestine.  The problem with that is there is only approximately 23 feet of small bowel in the human body and your small bowel is a very important piece of human equipment. Personally, I had a small bowel resection surgery which fixed an extremely painful then-pressing Crohn’s flare-up only to have Crohn’s come back or “recur” and affect the same area of my bowel a mere two (2) months later.  After almost another two (2) months of aggressive medical treatment to try and avoid another bowel surgery, this Recurrence of Crohn’s Disease in my small intestine required another surgery to remove more of my small bowel only one hundred twenty (120) days from the date of the prior small bowel surgery. Additionally, and as referred to above, the 23 feet of small bowel serves several different important bodily functions such as digestion and absorption of nutrients so each time a portion of the small bowel is surgically removed or altered, the patient will have to make significant lifestyle adjustments to remain healthy and appear normal.  There is also the reality that every surgery creates scar tissue or adhesions and these natural byproducts of surgery can, by themselves, cause Full or Partial Bowel Obstructions necessitating even more surgery.  This additional surgery creates more scar tissue to the point where a viscous cycle forms such that the following credo was created: “more surgery begets more surgery.”  In summary, these recurrence issues are the reasons surgeons don’t like to perform surgery to fix or repair Crohn’s Disease damaged intestine.

Crohn’s Disease Medications

Prior to having to consult with a surgeon, the traditional Crohn’s Disease treatments and medications with which you might be familiar generally fall within the different levels or degrees of the disease and are as follows:

Anti-inflammation medications: (Asacol, Dipentum, and Pentasa);

Cortisone or Steroids: (Prednisone, Budesonide);

Immune system suppressors: (6-mercaptopurine [“6MP”], azathioprine, Methotrexate, and Imuran);

Biologics: (These are injectable “Anti-TNF” Agent medications such as Remicade, Humira and Cimzia which have been proven to be very effective pursuant to current Crohn’s research.  More specifically, the most current research indicates that the injection of these drugs binds them to “TNF” substances and that will block the body’s abnormal inflammation response. Some studies also suggest that the usage of biologics may enhance the effectiveness of immuno-suppressive medications. While I can attest to the almost dramatic positive effects of some biologics, I can also attest to the fact that the use of biologics in Crohn’s Disease can have VERY serious long term side effects many of which are only now first coming to the attention of medical practitioners.  It’s one thing to be aware of these terrible consequences due to the  small print [or fast spoken] legal disclaimers on the packaging inserts [or in TV/Radio commercials] of the biologics but it’s an entirely different reality when these patients taking biologics start showing up in emergency rooms around the world with life-threatening Lung Disorders and Fungal Infections.  Almost forget, these biologic drugs tend to also be very expensive.)

Antibiotics: Antibiotics are used for a variety of purposes in Crohn’s Disease because in some patients doctors believe there is a bacterial component somehow involved.  They are also used to treat bacterial overgrowth in the small intestine caused by stricture, fistulas, or surgery. Accordingly, your doctor may prescribe one or more of the following antibiotics: ampicillin, sulfonamide, cephalosporin, tetracycline, metronidazole [i.e., Flagyl]. (Personal Note:  For whatever reason, Flagyl has proven to be VERY effective for me during certain types of Crohn’s flare-ups.  In such instances, I typically take the antibiotic for 5-10 days and then get off of it.  I mention this because even the use of antibiotics in Crohn’s patients can have serious complications such as the prolonged use of Flagyl causing Pancreatitis. Again, I am NOT a Doctor but I have been in contact with many Crohn’s patients who have contracted Pancreatitis after significant use of Flagyl.  Amazingly, I have thus far avoided that nightmare.)

Anti-Diarrheal Medications & Pain Medications: These are drugs used routinely by Crohn’s patients for lifestyle purposes because no one wants to spend their days in pain or stuck in a bathroom.  Some patients even see specialty “Pain Management Physicians” to specifically treat their Crohn’s pain. Whatever the reason, you should always tell your gastroenterologist what medications you are taking because this information will help him or her in devising your overall medical treatment and it will also be an important piece of information your surgeon will want to know about.

Why so many Crohn’s Hospitalizations?

In answering Question 2 above, I tell people my doctors are always doing whatever is necessary to keep me off the operating table for the “disease recurrence” reasons described above.  The practical result in the 1980s and 1990s were increased hospitalizations although due to subsequent changes in healthcare and in the health insurance industry, I’m not so sure I would have been hospitalized as often or for as many days each time I was hospitalized if I got as many of the same type of Crohn’s flare-ups now in 2012.  In any event, since there are a variety of effective Crohn’s Disease medications, many of which I outlined above, I was thus often hospitalized to take these medications intravenously or in combinations/strengths which are not available outside the hospital.  In that regard, my gastroenterologist preferred seeing me in the hospital, sometimes for 20 days, if necessary, in an attempt to get me through a flare-up with the administration of medications rather than through surgical intervention and the likelihood of losing more of my intestines.  I’m not so sure health insurance companies would now agree with this safe and conservative approach since they like to “turn over” hospital beds like waiters turning over tables in a trendy restaurant to maximize their tip income.  In any event, doctors still follow the same conservative medication principles but more of the patient “response time” is done at the patient’s home due to the increased cost of being hospitalized. This harsh reality of a Crohn’s Disease flare-up adds to the feelings of loneliness and isolation which many Crohn’s patients unfortunately experience.

Finding the RIGHT Crohn’s Surgeon FOR YOU

I have gone through this short summary of Crohn’s Disease treatments and medications because I think a 1st time surgical Crohn’s patient should be familiar with the possible roads not taken and with all that is involved in leading up to Crohn’s surgery.  The 1st time surgical patient should also know that when they consult with a surgeon and their gastroenterologist thinks they need surgery, they are likely going to receive a recommendation of surgery since that is what surgeons do!  Of course, there are numerous exceptions to this but my point is that you want to make sure you’ve exhausted all possible medical treatments such that the only appropriate answer to your Crohn’s problem IS surgery.  If you’ve arrived at that point, then your only responsibility is to pick the surgeon who is right FOR YOU.  This means consideration of skill level, personality, understanding of your lifestyle and of the quality of life you are seeking by having the surgery.  You also need to go through a battery of diagnostic tests prior to the surgical consultation and your gastroenterologist will naturally order these tests in trying to help diagnose you.  It has been my experience that surgeons like to look at the actual Films from a CT Enterography and a GI Series.  Depending upon your medical/financial and health insurance situations, you may have to undergo additional testing.  Regardless, try to always obtain the original Films from each test so that the surgeon you ultimately choose can use them to successfully operate on you.

The Crohn’s Disease Surgeon – What to Expect

It’s difficult to recommend questions to ask a surgeon in a Crohn’s Disease case because with few exceptions every surgeon I’ve ever encountered has been SO confident and thorough that they leave little room for elaboration.  Sometimes, however,  this “confidence” can be construed as arrogance but I’ve also come to learn that with supreme surgical skills in Crohn’s cases comes a certain “self-assuredness” which can be off-putting if not expected.  For example, these surgeons bring up money and the cost of the surgery earlier in the doctor-patient consultation than in any other medical situation I’ve ever encountered.  Again, there’s nothing wrong with making sure you will be paid promptly for providing your services but such “directness” during a medical consultation may be a turnoff to you.  If that is the case, please at least take away from the encounter that Crohn’s surgery is SERIOUS BUSINESS.  The surgeon is being asked to basically take apart your insides and then put them back together sans the Crohn’s problems.  If, even with that understanding, you don’t feel comfortable with that particular surgeon, look elsewhere but don’t forget you will encounter some aspect of this self-assuredness in almost every surgical consultation.

The Crohn’s Disease Surgeon – What to Ask

Prior to actually meeting the surgeon for the 1st time, you should write out your questions so that you are organized and respectful of his or her time.  You should also have a written list of all the medications you are taking. Every surgeon will appreciate you doing this.  However, LISTEN to them first and even take notes before you ask your pointed questions as they are accustomed to the nervousness and anxiety of 1st time patients and thus they are usually overly  comprehensive in their initial explanation of the surgery.  Besides the obvious questions related to the surgery such as the possibility of doing your procedure via laparoscopic surgery (i.e., instead of cutting your entire torso open), the estimated recovery time and the amount of pain involved, you should inquire about post-operative care and about the subsequent limitations in your work and physical activities and when you can start instituting your dietary preferences. Ask about the most likely problems which will be encountered with your particular surgery and what the ramifications would be to you if such problems occurred.  Getting back to the pain issue, I would ask about the availability of a Pain Management Team at the Hospital if you are overly sensitive to post-operative pain because Crohn’s surgery can be among the most painful surgeries performed. (For example, a day or two after my 1st Crohn’s surgery, a kind nurse gave me a pillow on which she had written what I thought were “girly” drawings and she told me it was my “Cough Pillow.”  I thanked her for her thoughtfulness but put the Cough Pillow as far away from me as possible in case one of my macho buddies stopped by to see me and found me cuddled up asleep with this girly pillow.  Well, after the first inclination to cough hit me and I tried to cough but nearly passed out from the pain, that Cough Pillow and its girly drawings NEVER left my side and I didn’t care who saw me use it!)

Always keep in mind that this very confident surgeon may have to attend to you when you’ve had an unsuccessful surgery and he or she will need to “problem-solve” to get you better.  Confidence is great but empathy and adaptability are also important.  Be realistic with what you expect from the surgery and make sure you are both “on the same page” with your expectations and the surgeon’s capabilities/intentions.  Understand the various costs involved with the surgery such as the Surgeon, Anesthesia, Hospital, Laboratory, etc.  The Surgeon will not be able to break down the other costs but the office staff will probably know from whom you will be receiving medical bills. Lastly, if this is the surgeon you choose but the price is too high, ask if there is a payment plan available.  It may feel strange negotiating over life or life-style saving surgery but you must and that’s why I think it is also always best to bring along someone (e.g., your mother, brother, sister, best friend, etc.,) who will respectfully act as your Patient Advocate of sorts because you will certainly need one when you are incapacitated from the surgery.  More to the point, it is always easier having a “buffer” to ask about or respectfully demand those difficult items or issues which you don’t want to get into a heated conversation about with the surgeon who will be presiding over you at your most vulnerable condition.  Besides offering you moral support, that Patient Advocate can more easily objectify the “transaction” just as the “self-assured” surgeon can since he or she has presumably done this hundreds or thousands of times before.

Now, you are ready for surgery.  Good luck.

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