That’s all.

She’s just the best.

Thanks for your comment and thanks also to all those at Mayo Clinic who made this event so very special. It was just extraordinary and I hope it goes from strength to strength. I look forward to seeing the Social Media Health Network – when will that launch?

I especially like your action point #3. That’s consistent with what we’re trying to do through the Social Media Health Network

http://www.youtube.com/user/mayoclinic#grid/user/6B2F679FE66FB83C

I documented the crux of my futile attempts to obtain competent health care since 2003 on my blog chronologically at http://doctorblue.wordpress.com. The Stories are numbered from 1 on with a blog overview titled “Replace the Caduceus”. They name doctors, hospitals, labs, etc.

Since I am now 55 and my never diagnosed nor treated illnesses are congenital, the actual story is much worse. Missing are my various hospitalizations as a young adult that amounted to little more than keystone coppery. Also missing is the toll that my illnesses placed on my quality of life — what I had to do to hide and overcome my health problems to try and have any kind of a life. I just figured that that’s what people with health problems do — muster by the best you can. I didn’t realize until I started researching and learning about medical care and diseases that what I have is very treatable (if caught early enough) — so treatable, in fact, that medical professionals who look up my illness in the Merck Manual assume any infectious diseases and gastrointestinal surgeon should be able to help me. I dare them to find one who can. I’m still looking!

The problem finding a doctor is due to the fact that doctors within a field subspecialize in diseases that interest them, and actinomycosis is not even on the radar screen in the U.S. Even when there is no insurance requirement for a referral, most specialists won’t see patients without a definitive diagnosis from another doctor to save time. I spent all of my savings going from one doctor to the next trying to find one who knows anything about my illnesses. My blog has many examples of the many and innovative ways I’ve tried to find the “right” doctor and sought help from others to try to find the “right” doctor. Still looking. Apparently, no one knows how. In the meantime, my health is slowly deteriorating. I can hardly do anything. I have no help or support.

Each doctor assumes that the next doctor will help. So how many doctors does it take to realize I need gastrointestinal surgery and IV antibiotics and blood plasma? Apparently, every one of them.

One outcome is that my case becomes reminiscent of Terry Schiavo’s. Doctors thought she wasn’t sick until she went into a coma. I have a slow bleed from well documented ulcerations. When someone loses enough blood, he may lapse into coma, and if no one notices, he eventually dies. If someone notices, I’ll be rushed to the hospital and put on life support at the Commonwealth of Virginia’s expense. My Disability Medicare doesn’t kick in until August. With no immediate family and no health directive, I wonder if the Governor of Virginia will then have the task of deciding how long to keep me on life support.

I don’t want to go to any General Surgeon who has no idea of what’s wrong with me as my gastrointestinal problems are at both ends of my large intestine — the cecum and the sigmoid colon. The typical treatment is to remove the colon and have the patient live his remaining life with a colostomy bag. I’ve read there are newer surgical procedures with much less drastic outcomes, but you have to find a gastro surgeon who specializes in these procedures. I’ve known too many people with botched surgical outcomes, including my deceased mom. It really irritates me how many health professionals assume “any general surgeon or infectious diseases doctor will help you.” Apparently, they never had to try to get an appointment without a definitive diagnosis from another doctor.

I doubt there is much you can do say or do to help, either. But thanks for the chance to vent a little. I’ve come to believe that seeking help or getting anyone with authority to hear me is a lost cause in America.

Sorry it has taken me so long to respond to your comment = I have been thinking over all your comments and then ironically, working with medical students on their communication skills over the last few days. I have also been in some conversations around these exact spaces in between…. and you’re right, I don’t see any healthcare reform proposals addressing these issues, and yet, there are stats out there that can show that upto 90% of malpractice incidents are driven by mis or lack of communication. So it would be easy to say ‘if they just communicated better, we would stand a better shot’, but in my experiences, that capacity or vision to do so, just as their innate capacity to be with people, is structurally (spatially and temporally) and culturally disabled as they ‘professionalize’. I am not sure if you have read a book called ‘disciplined minds’ but it is an account of how the professions train and how much ideology rests in these practices. There are some good reasons for it = that they should know what to do under extreme stress but also some not so good reasons and consequences of such training = they often make errors, they neglect their own intuition, they are constrained structurally and so the spaces open up. I recall an interesting conversation with a QA person at a hospital back east who was discussing outpatient surgery actually and I proposed a shift in frame in terms of thinking ecologically = who is involved with care once people leave the hospital, how can they act collaboratively etc…. she was astounded by how much shifting that frame opened up her thoughts on different practices….and competencies. Medicine and health care is a team sport. The problem is, most of those professionals have been told that it is not, so what happens is that patients like you, get to see and experience individualized, atomized nodes of health care who do not communicate or collaborate with each other….the ‘medical home’ should be the patient as one of my colleagues argues…. then we might get to see some reform….by the way…. have you documented your entire journey through the system? It might make for an interesting piece to share….Have you also contacted some of the physician groups who are organizing for universal health care? As someone from a country with such a system in place, there seem to be less spaces in between….. I look forward to talking more with you!!

Kirsti

I have yet to see or hear any proposed legislation that would help keep more victims like me from becoming disabled unnecessarily by U.S. Health Care.

I’m talking about that person who isn’t outwardly bleeding who is made to wait 17 hours in agony in the ER only to be sent home and return two days later with a ruptured appendix.

I’m talking about the person enduring multiple hospitalizations to no avail until a surgeon overheard physicians discussing the hospitalized patient’s x-rays and upon viewing the radiographs, informed them that the patient needed a gallbladder operation.

I’m talking about that female colleague who had to have her uniformed and armed policeman husband accompany her to a repeat doctor’s visit in order to get the medicine she needed for her epilepsy and migraine headaches.

These are no longer anomalies. They have become commonplace, accepted occurrences in our society. And I’ve seen nothing in any proposed health care reform legislation that will change such accepted behavior that embodies the essence of wasteful spending, inefficiency and lack of communication.

We, as an enterprising nation with capitalistic ideals, have come to view “follow the money” as an acceptable mantra to justify nearly every health care foible.

Throwing money at the problem won’t fix anything without addressing how doctors practice medicine and how doctors are paid.

If you read Holding Health Care Accountable by E. Haavi Morreim, you’ll find that it is a well known and documented fact that the average insured U.S. citizen has less than a 50/50 chance of receiving an accurate diagnosis and proper treatment under our present health care system.

Would you risk your life savings deliberately in Las Vegas with those odds? I think not — at least most of us probably wouldn’t. Yet, without realizing it, based on the status quo, we’re doing so daily not only with our wealth, but also with our lives.

I should know. I became disabled unnecessarily only because doctors didn’t have time to read and analyze my test results — either that, or they were simply incompetent or didn’t give a hoot. Why else would SSA award me disability benefits for severe degenerative disc disease due to an untreated bacterial infection using the test results from the tests ordered by all the doctors I saw? For more on my story http://doctorblue.wordpress.com By the way, I’m still seeking competent medical care. It’s a crime.