I Want To Be A Vigilante

I want to be a vigilante. More than anything. I tried to keep this blog from becoming an outlet for my rants and raves, but yesterday, after meeting yet again more victims disabled unnecessarily by U.S. Health Care, I’m outraged.

I’m outraged hearing that a person who isn’t outwardly bleeding 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 outraged hearing about a 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 outraged that a female colleague 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.

What really got my goat, however, was an article on a respected patient advocate’s website attempting to justify why physicians don’t spend more time reading and analyzing a patient’s test results. The reason she gave was that physicians aren’t paid by the insurance companies to spend time reading and analyzing test results. There’s no code for this, she said.

The article explains that doctors are paid by insurance for every patient they see according to CPT codes, which are developed, maintained and copyrighted by the American Medical Association (AMA). Development and maintenance of these codes and the publication of all the software, books and manuals needed by those who use them brings an estimated $70 million in income to the AMA each year.

The article goes on to explain that the doctor’s compensation is tied to the amount of money the doctor negotiated with the insurance company for each CPT code procedure regardless of the amount of time it takes the doctor to complete. And the logical progression concludes that because there is no code for reading and analyzing test results, the physicians are justified in not spending their time doing such.

I ask, isn’t reading and analyzing test results implicit in being able to derive a diagnosis, which is required for insurance payments?

Is it now acceptable for doctors to simply order tests and not review results? If so, how do they decide which of the many disease/condition codes to circle on the insurance form? Do they throw darts? Is this decided by where the doctor’s finger lands when he closes his eyes and points to the paper?

I assume the physicians’ contracts with the insurance companies has language that refutes this notion.

Yet 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. That’s the way it is. Accept. Forget. Go about your business as usual. It doesn’t concern you. Turn a blind eye.

To me, private enterprise’s ethics sound more like the totalitarian “Big Brother” regime portrayed in George Orwell’s novel, 1984, than any views emanating from our government about health care reform — a government that appears to have gone AWOL when it comes to enforcing regulations.

This is no new revelation. In fact, 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.

My conscious mind keeps telling me that I’m barking up a tree with no chance of catching the squirrel. Being concerned and speaking out on such matters — even caring — is probably ruining my health even more than it’s already destroyed. I have to admit, the picture of the state of our present health care system gets my blood boiling. But my subconscious tells me something different, and I’m still not convinced getting heated isn’t a good thing given my low body temperature and blood pressure.

The Story #20: The Movie

My saga of attempts to get medical care continues with an adventure in film making.

One blog reader suggested that I pursue getting medical care by contacting medical schools, which, she said, revel in using patients as guinea pigs for its students. I have to admit, the thought had crossed my mind on more than one occasion.

In fact, I started drafting a film based on the notion of re-enacting a Jeopardy-style competition that pitted medical students from competing schools against each other. I toyed with the idea of incorporating as team coaches famous TV doctors, like Hugh Laurie as House, playing their TV roles in a real life “film” scenario.

Of course, no film would be complete without a romantic interlude. And so the film would start with a flashback scene from 25 years prior with a young med student’s happenstance one night stand with a much younger me. (You didn’t think that I wouldn’t use the film as another chance to try to get medical care, did you?)

The two had met in a Northern Virginia bar featuring a country western band, managed by the med student’s uncle. I was drowning my tears at the bar over lost love, when in walked the tall, thin image of Clint Eastwood as portrayed in “Fistful of Dollars.”

He stared at me the whole night before finally mustering the courage to ask me for the last dance. It was a slow dance, and he was a fine dancer. Holding correct dance position, he pressed me closer. He ended the dance with a long, slow back bending and dizzying embrace. He offered to drive me home as I’d become quite inebriated.

The student was a sophomore in a Michigan college to which he would be returning the next day. That detail had eluded me the night before. I became distraught upon hearing the news because I liked the young man considerably.

The one thing I knew we both had in common was that we had both been riddled with more than our share of illnesses as kids. Illnesses, I learned, that we still had then and that I know I still have today having never been properly diagnosed nor treated by any doctors.

Fast forward to today. Hugh Laurie, as House, is busy filming episodes for next season when he comes across an announcement that Johns Hopkins University Medical School is seeking a coach for the academic team that will be pitted against Georgetown University Medical School’s team in a battle of wits to determine which of the schools has the better diagnosticians. On a dare and as an alumnus, House cannot resist the challenge. So he leaves the crew mid-shoot to become JHU’s team coach.

The storyline leaves ample opportunity for the “House” cast to interject sideline sarcastic remarks about House’s untimely departure in an effort to get him to return to filming.

As JHU’s team coach, Dr. House meets with Georgetown’s team coach (another famous as-yet-to-be-determined TV doctor) who happens to have been the young med student in the film opening scene. The two antagonists inevitably become friends.

In the interim, the med schools have chosen six volunteer patients with complicated illnesses to be publicly diagnosed during the televised competition. I am among the half dozen patients.

As things progress, we learn that my illness, actinomycosis, is communicable only if sexually transmitted. (This bacterial infection is slowly progressive and often only becomes apparent in mid-life once it has already wrecked much havoc on the body and incited secondary conditions to arise.)

The young med student (now Georgetown coach) is given a second opportunity to be a hero, saving my life and his own with the help of a friend.

An alternate film scenario replaces the teams of med students with a team of actual doctors pitted against a team of TV doctors known as the “laypeople” team.

Is Health Care Reform The Lesser of Two Poor Choices?

I don’t think anyone knows if government-run or private-run health care is the answer. Both seem to be the lesser of two poor choices for a variety of reasons. Central among the reasons is the lack of focus on patient outcomes (quality of care) and the need to replace the practice of specialists handing off chronically ill patients to other specialists with a team based approach for diagnosis and treatment.

My perspective is colored by my experiences with many doctors working within a privately run, for-profit medical care system — even before there was managed care.

I became disabled under the privately run, for-profit managed care system because the many many doctors I saw in the last decade did not read or analyze my test results. Each assumed either the primary care doctor or another specialist was quarterbacking my care.

I was passed around, referred for repeat tests, and no one was managing or seeing to it that I actually got medical care. When I complained in writing, the doctors and insurance company ignored and dismissed my complaints. I was unable to get anyone to listen to me.

So I gathered my medical records, studied everything medical and self-diagnosed. What I found was that I have what are typically illnesses diagnosed in childhood: actinomycosis and Hirschsprung’s disease. I’ve been sick that long but my immune system was strong enough to get me by..until I turned 50.

My symptoms of not being able to have a bowel movement without laxatives or an enema throughout my lifetime from when I was a baby was caused by Hirschsprung’s disease (a lack of the nerves needed for adequate gastrointestinal motility). I now have a partial obstruction in the ileocecal area (possible appendicitis), sigmoid colon stricture and abnormal colonic mucosa midsigmoid that showed up on two CT-scans and the SBFT series of x-rays. Doctors didn’t know what to make of the abnormalties because they weren’t surgeons, so to save face or out of pride, they ignored findings rather than refer me to a surgeon who can read and understand what was on the radiographs.

The two CT-scans found that my entire colon was stool-filled. All this waste was being recirculated throughout my system, causing bacterial, viral and fungal infection, wrecking havoc with my immune system, causing adrenal overload, hormone imbalance…on and on. I have multiple lab tests positive for everything from H.pylori, clostridia, staph, candida albicans, Epstein Barr virus, HHV6 infection…on and on. All this waste in my circulation caused peripheral vascular disease and arteriosclerosis making it difficult for me to breath, absorb nutrients and get oxygen to the tissues so I can function properly. All of my organs stopped functioning properly.

Don’t you think one of the dozens of doctors I saw over the years might have taken note enough to diagnose and treat me? None did.

Doctors groaned when I brought them the inch-thick stack of current test results in the hopes that each would not insist on re-ordering his own tests as so many of them did. They told me that they did not have time to read my test result reports. I was too complicated a case for their specialty so they had to refer me on to another doctor, but never to the gastrointestinal surgeon I needed to see who could address the route cause of my illness.

(If anyone knows of a superior gastrointestinal surgeon, please leave a comment or email me.)

Doctors who could not answer my questions about what the clearly visible ileocecal mass was that the radiologist pointed out in the CT scan report, simply wrote that they saw no gastrointestinal problems rather than risk losing face due to incompetence or lack of knowledge. No one wanted to deal with me, so they didn’t.

So when my money ran out, and the insurance ran out, I applied for Social Security disability using these same reports that my many doctors ignored. With these same test results and independent evaluation, Social Security employed physicians found in record time (3 months because we waited 45 days for any of my doctors to respond to SSA’s request for input) that I was severely impaired in so many ways. The most blatant result of not being treated for the infections running rampant through my body was the severe degeneration of my spine. I had no problem being awarded Social Security Disability and not one private doctor nor any attorney helped me.

In fact, I have contacted a dozen medical malpractice attorneys but none will take my case because I cannot pay them. Despite advertising to the contrary, all the attorneys I contacted really only want simple accident cases — not cases involving so many doctors, labs, hospitals, insurance companies, etc.

Law is really only a big poker game. Each side keeps upping the ante (cost) with pretrial motions that have nothing to do with me or justice, but with court procedure and rule making. It’s a big, costly game. No attorneys are handling cases like mine pro bono (too costly) or on contingency even when I offered to up their fee to half the award rather than the standard third. For them to take the case, I needed to put up an initial deposit of $20,000, which I don’t have.

I have since learned that attorneys’ reluctance to take on such cases as mine has to do with how convoluted health care law remains. There is no consensus about standard of care, whether the case should be tried in federal or state court, or even who the responsible party is when a patient is harmed due to negligence.

Based upon my readings, I’m surprised any medical entity is ever found guilty of medical malpractice.

I know what is wrong with me, and I know what it will take to get me well as long as disease hasn’t metastasized to cancer. Simple laparoscopic surgery, some penicillin, and other antibiotics, IVs to flush my system of pathogens, and nutrients to rebuild. The rest is up to God.

Recent studies found that spine and brain degeneration injuries previously thought to be permanent have now been found to be curable. The body does heal itself with a little help.

I’ve been doing what I can with vitamins and herbs, cleansers, etc. to try to dissolve whatever is in that ileocecal mass (redundant cecum) since I can’t do surgery on myself. From what I can gather, it appears to be an infected appendix that has grown trying to deal with all the toxins and waste in my system. (I am very nauseous and light headed almost all the time from die-off.)

To me, it is unbelievable that no medical professional will help me or even review my patient records to verify what I am saying. I watch doctors quickly flip through the test results, even new results from tests they themselves recently ordered, and ignore such findings as coccobaccili and heavy growth of e coli indicating enterocolitis… The pages turn so quickly it’s impossible for even the best of speed readers to grasp what is written on the pages.

I’m without funds or medical insurance now. Social Security makes all but select Disability beneficiaries wait 24 months before qualifying for Medicare. I qualify for Medicare this August, just about the time I’ll be homeless due to foreclosure.

Is this a nightmare or what? When doctors keep referring a patient, the patient gets a rap of being a hypochondriac that no one takes seriously. Most people side with the doctors because they assume someone who went to med school and paid all that money for a degree surely must know more than a silly patient who looks like a child.

I’m taking bets on whether I’ll get the same run around with doctors on Medicare or whether a competent doctor will finally refer me to a competent gastrointestinal surgeon or by then, a competent oncologist.

If I was paranoid (which I am not) I would think this was a conspiracy against me, but I’ve seen too many other people in the same boat. We’re all ignored. Many patients just haven’t made the effort to assemble and scrutinize their patient records and research to figure out what all the test results mean.

There is a cause for most disease that is curable if addressed before it metastasizes into cancer.

What I really want to see is enough good hearted, competent doctors get together, acknowledge the repercussions from the system’s limitations, and come up with ways to change for the better. I’m certain that if a group of doctors presented a plan purporting a better way to provide health care to a venture capitalist, those doctors could raise the money they needed to put their idea into action. This could be a prototype that could be expanded if it succeeds.

Obama isn’t proposing doing away with private health care. He just wants to provide people like me an alternative because he knows that government ends up paying — in disability benefits and Medicare — for private health care’s mistakes anyway. I’m proof of that. Why not try to put something into place that might prevent someone like me from having to become disabled in the first place?

At least the Social Security employed doctors read my reports. It only took them one month to figure out what was wrong with me. I’ve been seeing private doctors for 55 years, and they still haven’t figured it out.

I believe isolating each of the specialists is the main problem. The specialists need to talk to each other to understand what’s going on systemically in a patient’s body. The pathogens that cause infection don’t stay in one area. They travel via the lymph, bloodstream, even tissue to other parts of the body and cause secondary problems.

How are doctors expected to diagnose anyone if he is limited to inspecting only one area or one organ? He’s working with blinders on, running to a finish line based upon the narrow view of the road he sees without the benefit of peripheral vision. No wonder there are so many medical mishaps, most of which go unreported.

I’ve always believed in the saying “Do what you love and the money will follow.” I never got rich, but I loved my work and made a comfortable middle class living. Well, it seems doctors aren’t doing what they love if they have to spend so much time chasing insurance money. To me, medicine has become a business about money — not about helping people heal. No wonder everyone is miserable.

In Defense of Healthcare Reform

Obama could gain more support for his proposed health care reforms, if the government actually enforced its existing laws.

Under our current system, I believe medical insurance companies have vicarious liability for the negligence of their network providers. Calling the insurance companies to the carpet for the negligence of its providers would expose reasons for the high cost of private for-profit health care and the low quality of care.

I’ve been disabled the last five years because the many providers I saw while insured by Cigna didn’t have time to read the test result reports. Cigna rewarded its providers with year end bonuses for having more healthy patients, so my doctors “saw” more patients as healthy regardless of the patients’ actual condition.

On the other hand, using these same records and independent examination, the Social Security Administration’s employed physicians — whom, I suspect, have more time to read and analyze reports — found that I was disabled due to degenerative disc disease caused by untreated infections.

Based on this experience, I assume that I might have a better chance of getting government paid doctors to listen to me and provide the needed care for a few reasons. 1. There might be more accountability for satisfactory patient outcome. 2. Doctors wouldn’t be paid based on the number of patients seen per day, but on the service provided the patients they did see.

Insurers who advertise and promote a patient’s bill of rights in SEC filings shouldn’t get away with dismissing and ignoring member complaints, which is exactly what CIGNA did in my situation. I have written correspondence to CIGNA, my primary care physicians and referred specialists complaining about their failure to take my health concerns seriously. (Since I have been disabled the last five years, I think I have a point.)

My blog http://doctorblue.wordpress.com #8 “Search For A New PCP” provides details about my experiences dealing with CIGNA customer care and the numerous, repeated phone calls it took to correct multiple billing and coding errors and to get approvals for CT scans and diagnostic procedures. Surely, insurers should be corporately liable for failure to properly oversee staff and correct quality related problems, and for breach of good faith and fair dealing in failing to provide the insured appropriate care, as well as for breach of fiduciary duty for failure to monitor, investigate and oversee its management system.

Yes, I got my CT scans, MRIs, SBFT, colonoscopy, etc. — all showing abnormalities that the insured’s providers chose to ignore, overlook, downplay…What good are they if no one is there to read and properly analyze the scans to form a proper diagnosis?

The referred specialists made mistakes and the referring doctors chose to side with the specialists without examining the evidence–the reports in my patient records. None of the doctors were receptive to my repeated attempts to convince them to reconsider their decisions. Try finding a medical malpractice attorney to represent the injured party once the patient is broke and disabled.

Perhaps CIGNA is the anomaly among all the other more proficient insurers, but I think not.

If you read my post #19 “Virginia Workers Compensation Claim,” you’ll see that I didn’t get the lifetime medical care and hand surgery I was awarded due to surgeons’ fear of 1) not being paid by the insurer under Workers Comp, and 2) differing opinions on the surgical procedure needed. Aetna was the employer’s insurance company.

We didn’t change civil rights until the courts got involved. We can’t legislate how people feel. But we can adopt laws that protect the rights of harmed individuals. Health care won’t change until the government mandates action through regulation. At least a government-run system would provide an option for obtaining competent medical care, which I don’t have now and didn’t have when I had medical insurance.

Letter to a Patient Advocate

Advocate,

Thank you so much for responding to my e-mail plea so quickly. I saw on the internet that you have another day job and couldn’t help wondering if you had given up patient advocacy because of constraints on your time or the inability of many with looming medical bills to pay for advocacy services.

I also couldn’t help wondering about the possibility of whether we could be remotely related given the similarities in our names.

I married into (and divorced from) family based in New York. My ex died from alcoholism. He was an only child and his parents are deceased.

I am the only one in my entire extended family born in the U.S. My parents are deceased. My mom immigrated from Munich, Germany and my dad came from Lublin, Poland after WWII. I’ve never seen any of my other relatives who live abroad. They don’t speak English, and I don’t speak German or Polish.

From your bio I saw that you were a registered nurse and a faculty member at a medical school. Your background gave me the impression that you might know the ins and outs of how to find out which surgeons really know their stuff and how to get access to such surgeons. In my travails, I’ve developed great respect for registered nurses as I found they are much more knowledgeable and facilitative than most give them credit for.

I say this because my need is very specific. I need access to a surgeon competent in gastrointestinal surgery, who is also knowledgeable about the latest surgical procedures used on patients with actinomycosis and Hirschsprung’s disease. This will most likely be a pediatric surgeon willing to work on a petite adult female, because these diseases are typically diagnosed and treated in children. And that’s it. There are no insurance issues. There’s nothing else. I just need access to someone who knows about the illnesses I have.

I was neither correctly diagnosed as a child nor adult. Most non-surgeon physicians do not possess the knowledge they need to recognize the symptoms associated with these diseases. I can’t find one non-surgeon physician who can read radiographs or who understands the significance of radiologists’ medspeak when the radiologist tries to describe what he sees (but doesn’t understand).

The only people I know who had successful outcomes finding competent surgeons were those who had a connection (someone working in the medical field). The only way they got an appointment to see a competent surgeon was because this inside connection personally asked the surgeon to meet with the patient. Once the patient met with the surgeon, and the surgeon agreed to do the surgery, then the patient went to his primary doctor to get the insurance-required referral to this specific competent surgeon. Usually, the primary physician had great consternation about “his” patient’s having sought out surgical care which he, the primary physician, and all his referred specialists hadn’t deemed to be necessary. There was a bit of arm wrestling with the primary physician to get the needed referral. (It all has to do with doctors’ egos and saving face.)

The people I know who went through this scenario are very protective of and will not share their “inside” connections. I suppose it has to do with not wanting to overburden and risk losing their contact(s).

I am seeking this inside person who can help me obtain proper medical care from that certain surgeon. Given all of your present obligations this may not be you, but maybe you know someone who might be able to help me.

I’m going to violate the first rule about e-mailing and make this message way too long so that I can relay to you more of my experiences seeking help — some of which involve methods you suggested. This might help trigger some thoughts about ways to specifically target “inside” sources.

1) I contacted my elected officials or, rather, their “constituent representatives” on both a state and federal level. You can’t get past the guard dogs for a brief meeting with a politician without a big check. I sent written correspondence asking for assistance to State Delegate Adam Ebbin, State Senator Mary Margaret Whipple, U.S. Representative Jim Moran, and U.S. Senator Jim Webb. The bottom line is that politicians don’t intervene in personal matters. Senator Webb’s office did help me with Social Security Administration issues since I became disabled while seeking medical care.

(Isn’t it ironic that the U.S. would rather pay out disability benefits for the rest of someone’s life than help someone obtain proper health care?)

I found the attitude toward chronic illness among political constituent liaisons interesting as well. Suzy Warner, district director for Congressman Moran, said she felt really sorry for me, but that her husband had received great care before he died of cancer, and so she couldn’t relate to my experiences. She said she was surrounded by children, family and friends during her husband’s illness, which comforted her. She said she knows that her husband was left to deal with the trauma of chronic illness alone, but there was nothing she could do for him. She asked me what illness I had, and looked it up on Wikipedia as we spoke over the phone. Once she saw that actinomycosis is treated with penicillin, she said it didn’t appear I was that bad off and couldn’t believe I would have trouble finding competent care.

Actinomycosis (like mycobacteriosis) is a slowly progressive, invasive and highly debilitating bacterial infection. Untreated, it causes one’s bones to degenerate, which affects one’s neurological system, which impacts every organ in one’s body. Some forms affect only the facial and neck areas. Other forms affect the lungs, abdomen, female organs, the vertebrae… My infection is systemic (affecting my entire body). It is treated in-hospital with surgery (to remove abscessed masses) and IV penicillin for 2-4 weeks followed by oral penicillin for 6-12 months. It is often misdiagnosed as carcinoma or tuberculosis (and no one thinks those diseases are insignificant.) In some cases, untreated infections metastasized into cancer.

Two of Senator Jim Webb’s constituent representatives suggested that I look into government programs like Medicaid, food stamps, HUD for housing since my home is in foreclosure, etc. When I asked for more specifics about which programs I could apply for, their responses were flippant — too many to be expected to keep track of. Well, state participation in the federal Medicaid program is voluntary, and Virginia does not offer Medicaid to the disabled — only women during their pregnancies and to children. You have to have no assets and an income of less than $600 per month to qualify for food stamps (from $10 to $100 per month). The wait list to qualify for HUD sponsored housing is three years long. Fairfax County stopped doing Section 8 vouchers years ago. There are no state programs in Virginia to help the low income or disabled. Don’t you think our politicians should know this? Don’t you think the staff’s “let them eat cake” attitude toward helping the poor is a bit over the top?

Jane Burton in Mary Margaret Whipple’s office suggested I contact the Bar Association to find an attorney so that I can get medical care.

Adam Ebbin’s staff couldn’t get it together to even acknowledge my concern. I got a call stating that my request was received and would be looked into, but no call back. I’m assuming that once it was deemed a personal matter, my letter was trashed.

Written comments submitted to federal legislative aides concerning my experiences and the need for health care reform landed in the abyss. Blog discussions on WAMU’s The Conversation revealed that my experiences contacting my elected representatives was not uncommon. Others wrote that their opinions and suggestions were also seemingly ignored.

2) Health Care Blogs. I signed up and participated in a half dozen. Great for moral support. The need for competent medical care is rampant. Very unhelpful for someone with a rarely diagnosed illness like actinomycosis, for which there is not even a support group. NORD, the association for rare diseases, didn’t even have it listed. I get lots of general suggestions to seek out clinical trials, or to contact any infectious diseases specialist who “ought to” be familiar with…

You need a physician’s referral for clinical trials, and I couldn’t get my doctors past a diagnosis of high anxiety. Then again, what would a clinical trial for actinomycosis be trying to achieve? Proving the efficacy of penicillin? Trial surgery to remove an infectious mass? My factual experiences with doctors in which I name names and reveal my medical history are detailed on my blog. The doctor visits are ludicrous. I need to include an entry on the “10 Dumbest Things Doctors Told Me.” Things like, “You’re about 50 now. Just wait a few months. It’ll all go away. You can wait that long, can’t you?” The list is long.

I saw Infectious Diseases Doctors David Yoho and Allan Morrison and others. They don’t even believe that esophageal or gastrointestinal yeast infections exist even though Merck and other pharmaceutical companies charge exorbitant prices for their newer IV antifungals like Cancidas, which were developed to treat gastrointestinal fungal infections. The infectious diseases doctors I saw believe that fungal infections only occur cutaneously on the skin of HIV and cancer patients, in women’s vagina and as harmless oral thrush that everyone has so there is no need to treat.

They believe the more people that have a condition makes the condition “normal” and not in need of treatment. This same logic was used in developing the “normal” reference ranges used in standardized blood testing. The ranges actually represent the predominant findings of a population that is largely sick. They have nothing to do with determining whether someone is “healthy.”

3) Seeking Publicity. My attempts without knowing someone specifically at the station or newspaper fell flat. I submitted my story to Discovery’s “Mystery Diagnosis.” It was rejected because I don’t have a happy ending. There’s no resolution. Discovery gets thousands upon thousands of stories from people just like me seeking competent care to no avail. It’s an old story no one wants to hear without a happy ending. It’s too depressing otherwise.

Because I have no family and am in very bad health and in pretty severe pain, I don’t care about privacy. My blog is an attempt to tell all to the world. (I’d love to be able to get my x-rays uploaded, but I don’t have the technology to convert DICOM software to something XP recognizes.) There is no one left to protect. It’s just me, and I’m not doing so well. Time is running out.

I could put more effort into getting my story publicized, but my energy is very limited. Since I get Medicare in August, I thought it might be more productive to try to find a surgeon and schedule surgery. I could still seek to publicize my story after recovery and might have more interest in a story with a positive outcome.

4) One last example about the difficulty in getting medical help with an infectious diseases doctor at Johns Hopkins.

I heard Jonathan Weiner, Johns Hopkins University professor of health policy and management, on The Diane Rehm Show. So I contacted him for assistance. (When Diane Rehm had difficulty locating a physician knowledgeable about spasmodic dysphonia, she went to Johns Hopkins without a referral and was diagnosed within one hour by a JHU physician, who treated her at the same visit.)

Prof. Weiner suggested that I make an appointment with JHU’s Infectious Diseases Division physicians who are alleged to have expertise in rare mycobacterial diseases. He even had the admin assistant call me to set up the appointment. Wow. But when I didn’t have a doctor referral stating the diagnosis already, she refused to make the appointment and stated that it was JHU policy that all patients must have a doctor’s referral to be seen and the referral must state the diagnosis or reason for the referral so that JHU physicians will know upfront if they will be able to help the patient.

When I repeated this unbelievable response to Prof. Weiner, who, mind you, is in charge of JHU health policy and management, he said he too could not believe that a JHU physician would not see me for an initial consultation because I did not have a doctor’s referral. Keep in mind, everyone acknowledged I did not have medical insurance coverage and that I would be paying cash for the office visit. Professor Weiner suggested that I file a complaint with JHU Patient Relations (the patient advocacy group). I did.

To cut to the chase, on January 13, 2009, I received the following written response to Patient Complaint #12610 from Paul G. Auwaerter, MD, Clinical Director, Division of Infectious Diseases, Johns Hopkins University:

“Dear Ms. Gardiner: I have been notified through the JHMS Patient Relations of your complaint regarding some telephone calls in order to set up an appointment in our Division of Infectious Diseases. As you were appropriately told, we ask that patients be referred by their physician with a specific question. Since we have limited faculty and limited appointment times, this is how we can best determine how to help the patients most in need.”

I want to add that when I was trying to set up the appointment I faxed over a pathology report showing actinomycotic granules, lab tests positive for bacterial infection, and CT scan results demonstrating the features seen in patients with actinomycosis in order to prove to JHU doctors that I had actinomycosis. They said the tests weren’t current enough and would have to be redone as if some miracle had occurred between then and now.

In sum, while all the advice I’ve read about empowering patients to take control of their medical care is right on, I found the practical application of such advice intangible. The advice seems to be written for a people and a place as things “ought to be” and not as they are. We’re dealing with less than perfect human beings who have chosen to “follow the money.” Doctors lost sight of the fact that patients pay the insurance companies who pay them, so it is ultimately the patient whom doctors should be working for — not the insurance companies.

This focus on appeasing the insurance companies to get paid seems to have warped doctors’ (and others’) view of what they do. Insurance companies who reward doctors for having more “healthy” patients encourage doctors to report and see more “healthy” patients regardless of the patients’ actual condition. It takes less time to see “healthy” patients, and we all know doctors are paid based upon the number of patients they can see in a day. On my own, I’m fighting a Goliath. That’s why I need your help or help from someone like you. I need someone who can get me an appointment with a competent gastrointestinal surgeon.

Very respectfully yours,

“Doctorblue”

Write This Story’s Ending

Some readers want to know what happened as if this was an episode of the Discovery Channel’s “Mystery Diagnosis.” Was my self diagnosis accurate? Did I have the surgery and was it successful? Did I discover the cure for what is ailing me? But my story didn’t qualify for the TV show because there is no happy ending. That’s the problem with real life. It’s not like the movies.

So who’s stopping you from making it so?

In “John Q,” a 2002 film starring Denzel Washington, a down-on-his-luck father, whose insurance won’t cover his son’s heart transplant, takes a hospital’s emergency room hostage until the doctors agree to perform the operation. The movie might have been too depressing if, coincidentally, a woman killed in a car crash hadn’t happened to be an organ donor with a matching blood type…and a TV news crew hadn’t broadcast video of a heart wrenching phone conversation between father and son that touched the hospital administrator enough to put the son’s name on a transplant recipient list…

My story is more like a Mr. Bill saga. Mr. Bill is the little Play-Doh doll that became one of Saturday Night Live’s most popular characters. In every clip, Mr. Bill’s nemesis, Mr. Sluggo, dismembers and smashes Mr. Bill with the help of the evil Mr. Hands as Mr. Bill resounds his notorious refrain, “Ohh Nooo!!!”

My story, as portrayed chronologically in each blog submission, doggedly continues with Mr. Bill as the dismissed, forgotten patient, now disabled with severe bone degeneration and barely functioning after five years of searching for competent health care. In my story, if I die, doctors get away with manslaughter, and society doesn’t even blink.

My story is not unlike that of many other Americans whose doctors failed them. You just don’t hear about these people because most have families to care for them.

If I sound angry or bitter, well, maybe I am. Is it fair for me to be mad? And if so, whom should I be mad at?

When the credit crisis hit, it became apparent that nobody was even trying to restrain investors. Well, when the health care system here implodes, it, too, will become apparent that nobody dared stop the runaway money train we call U.S. health care.

We let doctors keep busy ordering tests and shuffling patients among all the different specialists and labs, when all the while no one was doing the math — adding 2+2 — to examine whether their actions were necessary, or even warranted, based on the particular patient’s circumstances and condition. Is all this testing and shuffling really necessary to diagnose and treat a patient? Or is the real reason for needing all of this to deliberately blur the role of primary diagnostician to make medical malpractice suits too complicated and costly for most patients to pursue?

Tell me, how many doctors does it take to diagnose a systemic bacterial infection? How many tests showing positive signs for inflammation and infection do doctors need to discern bacterial infection? Is it really necessary to order tests of substances from every orifice, get a biopsy and CT scans to determine a patient has an infection? Apparently, it is.

Or is penicillin not a sexy enough drug to prescribe? Are doctors afraid they won’t look smart and hip enough if they prescribe this antibiotic since none of the pharmaceutical reps are hyping it? Does the reliable affordable standard pale in comparison to all the super expensive new drugs being hawked? Do doctors intentionally prolong a patient’s illness with continued testing before prescribing any treatment in the hopes of eventually finding cancer where the selection of treatments is more varied and interesting? It seems so.

As you’ll see if you read my blogs, I wasted a lot of time and money while I still had medical insurance with doctors who were either incompetent or just stopped caring about their patients. I was caught up in a maddening scenario of being really ill, being told I wasn’t that ill and refusing to believe that not one of the dozens of doctors I saw was going to help me get better.

I didn’t figure out what I had until after I ran out of money and insurance and stopped seeing doctors. (None of my doctors diagnosed nor treated me despite the wealth of positive test results.) It took me another year to find a doctor who knew anything about actinomycosis (an invasive bacterial infection), so that I could get a prescription for penicillin. Usually the disease is treated in-hospital with intravenous penicillin for three weeks and accompanying surgery before the patient is prescribed oral penicillin for the next 6-12 months. Not having money nor insurance now, oral penicillin will have to do.

Actinomycosis is slowly progressive and developed to its severe state over my lifetime. It explains the many unrelenting earaches I had as a child and chronic problems with my teeth and tonsils. Undetected, this common childhood illness manifests as a much more debilitating illness in the adult’s middle years, when the organs and immune system are no longer functioning up to par. When the infection isn’t detected, it spreads to the skin, vertebral bodies, brain, liver, kidneys, lungs, intestines and pelvic organs.

I need surgery to address infection in my cecum and appendix as well as in the sigmoid colon. My doctors didn’t know what to make of the CT scan showing a mass in the ileocecal region, even though it’s known that most actinomycotic abdominal lesions occur there and cause partial intestinal obstruction. They chalked up my back pain and persistent lower abdominal pain to gas and did nothing. My big worry is that, left untreated, such growths may stimulate the onset of malignant cancer.

I am still looking for a competent gastrointestinal surgeon who knows about actinomycosis as well as Hirschsprung’s disease to address further abdominal irregularities in my sigmoid colon. It’s unknown whether the abnormal mid-sigmoid colonic mucosa photographed and documented during a colonoscopy in 2005 is cancerous because biopsies were taken from the descending colon instead. (A perfect example of how procedures performed routinely and repetitively end up not making sense and being detrimental.)

Yet despite the numerous Mr. Bill-type encounters I’ve had with doctors, I continue to pick myself up, put on my Pollyanna face and persist in believing I will find that one knowledgeable, empathetic doctor, only to have my spirits dashed again. Do you think Mr. Bill ever gets mad? I got too depressed to keep blogging about my experiences for now. I figure if I put some distance between my experiences and what I think about, the experiences will eventually appear to be more comical than tragic. What do you think?

It scares me a great deal to know that most physicians, even surgeons, don’t have a clue about so many illnesses. Many doctors justify ignoring illness by claiming that because so many people have the same condition, the illness is “normal,” and therefore, there is no need for treatment. So if we all get swine flu, ebola or infections caused by organisms also found in healthy individuals, we’re all healthy.

If you ask me, isn’t there a matter of degree of infestation or overgrowth that ought to be investigated here? I mean, the progression of logic for their argument would indicate that only organisms from outer space (not otherwise found in the human body) cause disease. Following their logic would mean outbreaks, epidemics and pandemics were all “normal.” The more, the merrier.

What I don’t need is an unknowledgeable surgeon doing exploratory surgery without any understanding of the diseases he’s confronting. With problems on both ends of my large intestine, it’s quite possible that I’d wake up after surgery with no large intestine. Who knows what else might be missing or left behind?

If you think my concern is a bit over the top, consider that while none of my doctors felt I was ill, or ill enough to be concerned about, or even diagnosed and treated, the U.S. Social Security Administration deemed me to be permanently disabled.

Last fall, I applied for and was awarded Social Security Disability within three months — the shortest time frame practical by law given that the patient’s doctors have so many weeks to respond to SSA’s inquiry. No non-SSA doctor nor attorney helped me with the claim. Many applicants aren’t awarded disability benefits until after they appeal their first denial.

I found that many people are under the impression that once you get Disability, you qualify for Medicare coverage. Not so fast. SSDI beneficiaries are eligible for Medicare coverage only after 24 months of being deemed eligible for disability benefits. I qualify this August.

I suppose legislators assumed state-run Medicaid programs would cover uninsured recipients in the interim. Even though the media reports and everyone thinks Medicaid is federally mandated for children and the disabled, not all states offer Medicaid to the disabled. Virginia, for instance, only offers Medicaid coverage to women during their pregnancy and to children.

So when I go out there now, again believing that the doctor I see will begin a treatment regime so I can get on the road to recovery, only to find that I must first endure the costly battery of updated tests to prove to this doctor that a miracle did not occur since my last battery of tests, I am watching my meager disability stipend — my only source of income — wither unnecessarily. I’m paying this doctor with the same funds I need to use to secure new living arrangements, food, etc.

My attempt to explain my dire financial situation to the doctor is met with disbelief. Surely, there are assets and savings! Since becoming disabled, I paid my bills from the proceeds of sold assets. When I ran out of assets, I stopped paying creditors. But for these doctors, it’s infeasible that my savings and assets were exhausted after five years of not working — paying for living expenses and medical help that was never delivered.

At each succeeding office visit, I endured an explanation of the rationale that all the tests were needed to justify to the medical insurance carrier…What medical insurance carrier? What part of “self pay” was not understood or believed? But the larger question that must be asked is: “Who is the doctor working for?”

I am hoping to have identified a competent surgeon and to have shored up stable living arrangements by this fall. I’m in the process of having my home foreclosed upon. Surgery will have to wait until after I find somewhere to live as I don’t want to end up being homeless with a colostomy bag.

As you can see, the story’s ending has yet to unfold. And that’s where you come in.

Now, as the story goes, no one cares. Society considers people a dime a dozen. I die. End of story.

Is this truly representative of Americans in America? Is this who we are? Tell me you believe you have the power to change this story’s ending. Not for me, but for yourselves. Why should you care? Well if it happened to me, it can happen to you — as unlikely as that seems in the moment. Do you really think you will escape the mistakes inherent in our broken health care system?

My problem all along — and the main thrust of this blog — is that I can’t find a doctor with the needed knowledge or will to help me. You can help by simply helping me find that doctor, who is most likely, a surgeon — someone who can read radiographs rather than rely on biased radiologist reports. (One doesn’t report what one can’t discern. One doesn’t mention what one can’t explain even if it’s right there in front of him.)

You can also help me find somewhere to live. It’s not easy qualifying for any type of living quarters once your credit is shot even if you offer to pay several months of security upfront.

You can help by finding me pro bono legal counsel — someone who is not afraid to stand up and fight for what is right and fair — someone who believes in the values upon which our nation was founded.

You can help by turning this story into a movie or episode on “Mystery Diagnosis” so that others might recognize how blatant doctors’ errors have become and change things.

You have a choice — to do something or to do nothing. Your actions will affect the outcome of this story and your own life. I never imagined I would be in this position. I’ve been independent and self reliant most of my life. It’s one thing to ask friends for help when you’re healthy. It’s another thing to ask for help when you’re sick with no idea of when or if you’ll get better. Well, I’m asking. If you believe in karma or the axiom, “What goes around, comes around,” you’ll know it’s the right thing to do.

What I Know About Health Care Politics

I’m pre-empting my continuing saga on efforts to secure legal counsel with this blog in honor of President Barack Obama’s conference on health care today. If NPR’s Morning Edition is accurate in its portrayal of events, this will be among the first meetings on health care that begins with a discussion on the ways health care delivery or quality of care needs to change in order to lower costs. Personally, I’d like to hear what suggestions practicing doctors have on the subject.

In re-reading yesterday’s blog post on my workers compensation suit against U.S. Health, it was clear to me that addressing how doctors are paid is key to improving patients’ quality of care. The current payment system rewards doctors for seeing lots of patients for short periods rather than for achieving results or helping patients actually get well. The insurance bonus programs designed to reward doctors for having healthy patients only encourages doctors not to take on chronically ill patients and to overlook illness in patients who really need health care.

Patients need to be empowered and brought into the “system” as active participants. This paradigm shift from the deist doctor who dictates patient care protocol in a “my way or the highway” manner will be difficult for many doctors to accept or employ. Such change will likely necessitate doctors hiring patient care coordinators who meet with patients to summarize their questions and concerns so that they may be addressed cost effectively with the physician.

For patients with multiple health issues who are seeing various doctors, the office care coordinator would be tasked with communicating with all of the patient’s doctors to make sure all care providers are versed on the patient’s care and progress. Implemented effectively, such coordination among care providers should facilitate proper diagnosis of the underlying cause of illness and prevent treating only secondary conditions that occur as a result of the undiagnosed, untreated underlying condition.

The position of care coordinator would be analogous to that of a project manager, who ensures that jobs are completed timely and within budget by keeping abreast of progress and troubleshooting glitches.

A rating system should be established so that patients can easily assess the services offered in different practices. Can patients book extra time with the doctor? Will the doctor be open to discussing procedure options? Will the doctor return phone calls from patients with a question or must the patient speak through his assistants? If a patient finds his medical record contains misunderstood or incorrect information, can the information be corrected? If so, what is the procedure?

The intent is to shift the focus to patient care and away from what the doctor needs to do to get paid.

I was quite inspired by U.S. Senator Ted Kennedy’s heartfelt promotion of health care for all in his speech at the Democratic National Convention last year. Still I can’t quite reconcile in my mind the dichotomy between what politicians espouse and the inequities that I find existing within established government health care programs. Take Medicare eligibility for the disabled, for example.

Those found to be disabled by the Social Security Administration are eligible for Medicare coverage after 24 months from the date the person became eligible for SSDI benefits with a few exceptions. Disabled persons requiring kidney dialysis or with ALS and a few other conditions are immediately eligible for Medicare coverage. I ask, where’s the equality in providing health care coverage through Medicare only for those with these certain illnesses?

I am disabled — not because insurance refused to pay or because of a botched procedure, but because my spine and central nervous system severely degenerated due to doctors’ failure to diagnose and treat the infections that were caused by my undiagnosed and untreated Hirschsprung’s disease. The sooner I can get access to real medical care, the greater the chance there is for me to get well enough to go back to work and become a productive, tax paying member of society again.

How hypocritical is it that our government sees fit to only allow those with certain disabling illnesses to access medical care immediately upon being awarded disability benefits? Multiplied by the thousands affected, have our legislators chosen to sacrifice tomorrow’s future to save pennies today?

Those who suggest seeking medical care at the few low cost health clinics in this area are obviously uninformed about chronic illness. Any health clinic official will tell you that such clinics are not equipped or intended to address chronic or complicated illnesses. In fact, under our current health care system, it seems no doctor is set up to address chronic illness. ER doctors complain that too often internists have resorted to sending their non-emergency patients to the ER for medical work ups rather than conduct the necessary tests and take the time to diagnose their patients’ illnesses on their own.

When I approached my elected representatives about the dilemma, I couldn’t get beyond their staff, who suggested I hire an attorney or just couldn’t relate. In Virginia, you need a doctor’s backing to file a malpractice suit. I think that’s unconstitutional. Why should I need a “treating” doctor’s testimony when I have test results to prove my case? Even the Social Security Administration realized that many doctors refuse to participate in their patients’ disability applications and so will arrange for some patients to see assigned SSA-paid doctors to help with the disability determination.

I’m hopeful and fearful about our new Congress’s ability to move beyond its self patronizing environment and start addressing topics until now considered too risqué to tackle publicly — like what are we getting for our health care dollars.

With so many conceding that our health care system is broken, I can’t understand why politicians have refused to address the quality of health care. The focus has all been on funding. My insurance paid for the majority of my tests. Doctors, on the other hand, went on strike and didn’t tell anyone so they could keep collecting fees.

Consumer laws protect us from shady contractors who don’t perform per their contracts. Why is it okay for doctors to get paid for simply trying to help a patient? Who decides how hard they have to try? Contrary to HMO policy, my internists relinquished care to the specialists they referred rather than act as care coordinators per their contracts with the insurer.

The focus of nearly all the doctors I saw was on how to finagle the diagnosis to the insurer to expedite payment rather than on patient care. I found there was a pattern among doctors, in general, to downplay a patient’s condition to the insurer to expedite payment. At first, this didn’t faze me. But then, the doctors forgot what the real diagnosis was, hence making it impossible for me to get the care I needed. If doctors persist in massaging their diagnoses as they’re taught to in classes held on how to expedite insurance payments, they should at least keep two sets of books to separate reality from fiction.

Under our current money focused system, our medical community is playing Russian roulette with an aging population. It’s causing people, like me, to become disabled unnecessarily. Refuse to change and just watch our nation’s social security fund being drained at a much faster rate by the increased numbers applying for disability because no one would address the impaired quality of care largely caused by our health payment system.

Outpatient care should be designed around a center in which internists and various specialists work together to come up with a comprehensive diagnosis. All would know how to read radiographs and be required to consult each other and come up with a comprehensive diagnosis before the first prescription was written. Liability for patient welfare would rest equally on the shoulders of each member of the diagnosing team, thereby creating an internal peer review check to reduce errors.

This would prevent a patient who started taking medication prescribed by one doctor from skewing test results ordered by the next specialist, seen weeks later. This would lead to faster and more accurate diagnoses since specialists are trained to only look for disease within their respective fields. Using the combined knowledge of all specialists upfront would drastically reduce the number of specialists who unsuccessfully treat a patient’s secondary symptoms while the root cause of disease goes unaddressed. This would mean less administrative paperwork, less test duplication, less wasted gas driving to all the different specialists’ offices and testing facilities and would drastically reduce the overall cost of health care. This would lead to greater patient health outcome and satisfaction.

The last few years trying to be heard or get help, I contacted all kinds of folks and tried all kinds of things to get through. I kept getting kicked downstairs to the admin or staff more concerned with protecting their realm than with truly assisting anyone with anything. It’s quite a statement about human nature.

When you get that many no’s, you begin to start wondering what it is about yourself or your approach that turns people off. Then you look around at the rooms full of people in the same boat, and you realize no approach can affect change if the recipient lacks the knowledge or experience required for you to get through. You feel like you’re Al Gore trying to get across the concept of global warming. You wonder if you have the same quality that enabled him to persevere. Then you think of the alternative — give up, die.

How loudly can someone yell H E L P!!! and still be ignored? All the while, you feel the cognitive dysfunction from your illness increase. You think you might wake up one day too alzheimerish to remember enough to care. That’s why I had to write down my experiences with outpatient care doctors and the medical community before I forgot. The stories are compelling and shed light on the chasm between medical research and the practice of medicine that hasn’t altered its robotic, deistic ways in over 30 years despite mind blowing advances.

The Story #19: VA Workers Compensation Claim

I received an email the other day from a friend who suggested I seriously consider filing a medical malpractice suit for failure to diagnose, medical errors and uninformed consent. She referenced a website advertising free assessment of cases anywhere in the U.S.

I had already contacted a dozen local law firms to file a medical malpractice suit on a contingency basis. They were all looking for slam dunks. They weren’t interested in my case because it involved too many doctors and hospitals and would require — in their estimation — considerable upfront time and money.

The one thing I learned about attorneys is that they operate much like doctors in that you have to put the case together for them. I figured that I’d have a stronger case if I could first find doctors willing to treat me for what I believe I have.

Even if I get better, I have irreparable damage to my spine and have incurred substantial monetary damages to justify a $2 million award. You’d think a $600,000 contingency fee for a negotiated settlement would be attractive to a smart attorney.

I haven’t had much luck with attorneys in the past. Take my 1983 Workman’s Compensation suit, Anna Czupryn v. U S Health, handled on my behalf by Ashcraft & Gerel, for example.

On January 19, 1983, while working as a sales rep/fitness specialist for Holiday Spas (Bally), I managed to impale my left hand with part of a Nautilus weight pin that had separated from its shaft. The exercise machine had frozen with the weights engaged as a club member was exercising. This left the selected weight elevated.

Typically, you could disengage stuck Nautilus weights by lifting up or pressing on the machine pads. But that wasn’t working this time. Plus after a busy 10-hour day that included teaching three aerobic classes, I wasn’t thinking clearly. I had clocked in at 9 a.m. It was after 8 p.m. when a member approached me insisting the Nautilus exercise machine weight pin was stuck.

I remember thinking “What do you mean, the weight pin is stuck?” and without assessing the situation, only half paying attention to what I was doing, I proceeded to pull the pin out from under the elevated weights. As I pulled, the cap part of the pin separated from the shaft and flew up within close reach.

In a reflex action, I caught the cap, palm facing up, just as the 40 pounds of weight came crashing down. My left hand ended up sandwiched between the weights. The hollow cap, now impaled in the middle of my left palm below my middle finger had kept the weights from crushing the bones in my hand.

As a small group of women began to form around me, I slipped the index finger from my right hand into the space separating the weights and lifted the upper weights high enough to slip my left hand out. In a haze, somewhat amazed, I stared at the hollow cap impaled in my left hand for a moment before I proceeded to pull it from my hand.

I expected to see a circular cut. I hadn’t considered that the cap would retain the impaled flesh from my hand as I pulled much like a cookie cutter extracts cookie shapes from dough. The hand began to bleed considerably.

Afraid that I would faint, women near me pushed me onto the carpeted floor. I assume they hadn’t intended the blow to be so abrupt and were simply reacting to the sight of blood. One member retrieved paper towels, which I used to wrap the wound. Another member ran to a nearby Roy Rogers and grabbed a cup of ice for my severed flesh. My boss drove me with my cup of iced flesh to the nearby emergency room at Fairfax Hospital.

I was seen right away. My hand was x-rayed and examined. The ER diagnosis was a puncture wound of the left hand and laceration of the flexor tendon and digital nerves. I was given a tetanus shot, prescriptions for Keflex and Tylenol #3, and was discharged with instructions to see Dr. William Dempsey, a hand surgeon, the next day.

In a letter dated December 6, 1983, Dr. Dempsey wrote: “On January 21, 1983, under general anesthesia, lacerations of the flexor sublimis tendon of the left long finger and flexor profundus tendon to the left long finger as well as a puncture donut wound to the palm was performed.”

The letter goes on to describe rehabilitation progress at follow up visits. The major problems indicated were lack of pullthrough of the profundus of the long finger and a build up of scar tissue at the donut wound in the palm of my left hand. In other words, the joint at the tip of my middle finger wasn’t working due to binding of scar tissue at the base of the finger. This gave my middle finger the same stilted and stiff appearance you’d expect to see if the finger was in a splint. Put more graphically, the finger all too often appeared to be making a politically incorrect statement as if I was giving someone the finger. And that wasn’t the only problem with the hand.

The large amount of scar tissue that had accumulated at the base of the middle finger was preventing me from forming a closed grip. That meant that I dropped things with my left hand often, that change would fall from my left hand… I had no grip. The scar tissue in the middle of my palm felt like I was holding a rod that prevented my palm from closing. When I tried to force a grip, it hurt just as if I was trying to bend an iron rod in my hand. My left hand was substantially weaker than it had been before the accident, and the prospect for developing severe arthritis from inflammation had grown exponentially.

In a December 9, 1983 letter, Dr. Stephen Shaffer, medical director of Northern Virginia Hand Surgery and Rehabilitation Center, wrote: “She has not recovered fully from the injury and the surgery, and now complains of having no grip, stiffness and loss of strength and use of the hand and loss of some hand control.”

Dr. Shafer’s impairment rating, per AMA tables, was as follows: “The patient may be considered as having 45% permanent physical impairment of the left middle finger for loss of motion, which equates to 9% of the hand, to which another 3% of the hand may be added for loss of coordination, giving her a total of 12% permanent physical impairment of the left hand.”

Another surgeon, Dr. Bruce Butler, Jr. had similar findings.

In a February 17, 1983 report, Clare Wagner, a physical therapist for H.A. Fontana, described the problem this way: “The profundis and superficialis tendons of the long finger apparently are now bound together, and this is preventing normal faster gliding of the profundis tendon, as demonstrated by an inability to flex the distal phalanx.”

As I understood it from meetings with Dr. Butler and Dr. Dempsey, corrective surgery would entail removing a tendon from one of my ankles to replace the faulty tendon in my left hand. The surgery would be followed by more months of rehabilitative physical therapy, and there was no guarantee that the same amount of scar tissue would not form. Dr. Dempsey even went so far as to not recommend doing the surgery because the chances for improvement were so slim. The site of the donut-shaped puncture wound was in the part of the hand known as “no man’s land” because the prognosis for a positive surgical outcome in this area was poor.

A graft that could cause possible injury to my ankle in addition to the poor prognosis for hand improvement made the prospect for further surgery non-sensical to me. So, on November 2, 1983, Ashcraft & Gerel filed an application for a workman’s compensation hearing to the Industrial Commission of Virginia. My hearing was scheduled for December 14, 1983.

Injuries covered under the Workers Compensation Act provide the injured worker certain basic benefits. These include: 1) wage loss compensation; 2) permanent injury compensation; and 3) injury related medical expense coverage, which includes all doctor bills, hospital bills, physical therapy, prescriptions and necessary travel expenses.

Compensation for permanent partial or total loss of a body part covered under Workers’ Compensation is based on a schedule set by the state. I found Virginia’s compensation schedule among the country’s worst from the injured party’s point of view. Permanent loss of use of a listed body part entitles the injured worker to 66 2/3% of his average weekly wage at the time of injury for the number of weeks listed on the state schedule.

I.C. File: 108-08-11 Anna Czupryn v. U.S. Health, Inc. shows that on December 16, 1983 I was awarded compensation for a 55% permanent loss of use of the left second finger for a period of 16.5 weeks plus “necessary medical care for as long as necessary.” On January 16, 1984, I received a check for $3,114 for my partial disability. The amount is much less than what I would have received for the same injury in other states, such as Maryland.

Fast forward 11 years. I decided to investigate whether surgical technology had advanced enough to come up with an alternative to grafting as a way of removing scar tissue surrounding the tendons in my hand. I contacted Aetna, the insurance carrier for my former employer. Aetna arranged an examination with Dr. Alberto Borges on July 9, 1994.

In a letter to Aetna dated July 11, 1994, Dr. Borges wrote: “I feel at this time that she could benefit from further reconstructive surgery of the left hand, which has developed a contracted, fixed scar involving the flexor plantar tendon. She should have a tendon release, together with debridement of scar tissue on and about the involved tendon. After this she should receive extensive physical therapy.”

Aetna authorized Dr. William Dempsey to proceed with a tendon release and debridement of scar tissue on and about the involved tendon. Dr. Dempsey, however, declined to do the surgery. In fact, I found many surgeons unwilling to do surgeries covered by Workers Compensation Awards in Virginia due to the amount of difficulty getting paid by the employers’ insurance companies.

Aetna had scheduled my July 9, 1994 exam with Dr. Borges for the second opinion which the insurance company required. As of March 30, 1995, I was still receiving notices of non-payment from Dr. Borges despite having forwarded Aetna multiple invoices over the previous months. I don’t know if he was ever paid or finally surrendered.

The issue of insurance company late or non-payment of medical care for the injured worker under Workers Compensation is nothing new. Ashcraft & Gerel had arranged to have Dr. Bruce Butler, Jr. complete an assessment of disability for my hearing in 1983. At my July 12, 1983 exam, Dr. Butler had recommended the same tendon graft surgery that Dr. Dempsey had suggested. However, Dr. Butler said he would only agree to do the surgery after he was paid by the insurance company because he had not been paid at all for some previous surgeries done under Workers Compensation for other patients.

This haggling over payment between doctors’ offices and my employer’s insurance company not only impeded my access to necessary medical care, but also affected my relationship with my legal counsel.

Attorney fees in Virginia workers’ compensation cases are regulated by the Commission and are awarded on a case by case basis. Ashcraft & Gerel was awarded $100 for legal services representing my claim.

The attorneys I’ve known clearly distinguished themselves from being confused with philanthropists. I could see how spending time corresponding between medical care providers and insurance companies over payments to ensure I received appropriate awarded care had become an irritation. Perhaps as a way to avoid having to write more letters, my attorney, Julia Butler, wrote in a March 1, 1984 letter to me that my employer’s insurance carrier was not obligated to pay for physical therapy treatments under the workers compensation award. This statement conflicted with the information in the Workmen’s Compensation pamphlet I had as well as my understanding of what lifetime medical care constituted.

I never had additional surgery or therapy for my hand — not because it wasn’t needed, but because, with all of life’s other pressures, I just couldn’t deal with the trauma of fighting for what I was rightfully due. And I paid a price for that, too.

As my other underlying, undiagnosed illnesses progressed, systemic inflammation permeated my left hand and caused it to swell. This resulted in further lack of hand coordination and control that unintentionally led to what one could misconstrue as deliberate intent on my part to make an obscene gesture. It’s quite a coincidence that not long after my boss asked to examine my left hand that I was fired from my position as principal broker of a publicly traded real estate investment trust for the tri-state area.

UP NEXT: RECENT ATTEMPTS TO RETAIN COUNSEL FOR MEDICAL MALPRACTICE

Tell Me Your Story

Since starting my blog about my futile quest for competent medical care in the U.S., dozens of readers have contacted me with similar stories of their own. The stories are heartfelt, sincere and alarming. It’s as if the chronically ill are living in a silent, forgotten underworld that no one else cares about or can relate to.

I truly believe there is hope in numbers. Knowing that there are others out there who’ve experienced the same sort of mistreatment or worse may bring courage to others as it has to me.

Ultimately, I’d like to assemble a grassroots movement to bring focus to our plight. After all, why should the government have to pay for doctors’ mistakes and negligence in the form of disability and Medicare payments and lost tax revenues? Why isn’t there a Congressional investigation into doctors’ practices and how they treat patients? Why isn’t the government recouping its costs from doctors found to be negligent? Why aren’t any health care reform measures focused on changing the internist-specialist-referral system that places patients in a fruitless endless loop of revolving doors?

Tell me your story here in the comments section. Then, if you are so inclined, send your story to your Congressional representatives, whose contact information is available at “Contacting the Congress” www.visi.com/juan/congress on the web. If you do write your legislators, tell them you are a constituent and what type of legislation or action you’d like them to take upfront. (For example, you could say you’d like to see a motion calling for the establishment of a Blue Ribbon Commission to investigate outpatient doctor practices based upon your experiences of simply being shuffled from one doctor to the next with no hope of being properly diagnosed or treated.)

If President Barack Obama is sincere in his pledge to change status quo, a sure way to prove it is to start investigating the industries the administration has taken a “hands off” policy toward in the past — particularly if enough people call for such action. Your story can fuel the fire toward progress and change.

Patients Googling Their Way To Health

Kudos to Google! I may never have deciphered what was wrong with me without the aid of Google search.

In spite of having read the Merck Manual from front to back twice and amassing a small medical library of my own, I have to credit my key breakthroughs in diagnosis to going online and googling specific medical terminology to learn the significance of test findings. Google results not only brought up websites that defined the terms but also brought up doctors’ abstracts of conditions related to the subject terminology. This is how I was able to piece together and make sense of all the seemingly disparate puzzle pieces involved in diagnosis.

A second source that gave me the reassurance I needed to pursue my belief that the multitude of things wrong with me were interrelated was “House,” the television show about what it takes to be a good diagnostician.

While in pursuit of a comprehensive diagnosis, some followers suggested sites like Diagnose-Me.com. The site was established in late 2002 as a doctor-programmer collaboration to provide a more in-depth evaluation of patient symptoms than a rushed in-person doctor consultation. (This just goes to show that even doctors are aware of the paralyzing limitations of our present health care system.)

Upon completing a questionnaire online, customers can choose reports ranging in cost from $0 to $77 depending upon the amount of doctor involvement.

A few years ago, I completed the questionnaire and received a report that gave a risk assessment for each of a long list of possible ailments based on reported symptoms. The report issued an advisory to seek professional medical advice for any conditions that may be life threatening. I found the report rudimentary in its computerized linear correlation of symptoms with possible diseases.

Rather than giving a comprehensive diagnosis, it rattled off a list of possible maladies based on each listed symptom individually. I opted for the free report. The more in-depth sample report gave lifestyle, diet and supplemental recommendations for many of the example patient’s possible ailments or conditions.

I always wondered why no one had developed computer software that could analyze symptoms and rule out those diseases that don’t fit all of the patient’s symptoms.

I found the problem with diagnosis is that so many disparate diseases have the same symptoms except for one or two key determining factors. Ruling out maladies that don’t fit all of the patients main symptoms comes up all the time on shows like “House.” Based on a list of patient’s symptoms, Dr. House’s proteges postulate the patient could have this or that except such and such disease doesn’t have x as a symptom, which the patient has, so they rule that malady out.

What the show demonstrates is that a good diagnostician doesn’t just rely on the science for diagnosis. Dr. House always saves the day toward the end of the show because he’ll see something, like a plumber scratching his balls, which reminds him of herpes. This sets off a light bulb about the diagnosis for his patient that he’s been struggling for. He’ll realize that herpes viruses cause nerve damage to various parts of the body; then treats the patient with antiviral medication. The patient recovers and goes on to live a happy, healthy life.

I had this same sort of light bulb moment this week. I started thinking way back to childhood about my health problems. I’ve always suffered severe constipation and had to have enemas to have bowel movements from the time I can remember — like three years old.

Doctors were as helpful then as they’ve been today. They recommend stool softeners, suppositories, laxatives and fiber. All the fiber did was cause painful gas, bloating and abdominal distension. The suppositories just melted uneventfully. Doctors all thought the problem insignificant. Some even laughed at how constipated I was upon digital exam. After all, everyone has constipation!

According to doctors, everyone has everything, so it must all be normal. That is, in fact, the standard upon which normal test findings are based. If the predominance of the population has it, it’s normal. And as our population continues to become sicker from eating unhealthy processed, sugar-laden foods, the bell curve of acceptable “normal” results widens. I ask, “If everyone gets ebola, will having ebola virus be considered normal, too?”

Wouldn’t you like a job in which you could just dismiss your customer’s complaints as something everyone endures so you wouldn’t have to fix anything? I bet you wouldn’t have many clients after a while. Yet doctors still thrive with loads of patients who never get cured and keep coming back because they don’t know what else to do.

We’re brainwashed to consult the experts. I believe the statement is nothing more than an attempt to push liability onto someone else in this highly litigious society.

We’re a litigious society because our lawmakers are in bed with those who finance their re-election campaigns. The only way to get justice in the U.S. is through a private costly lawsuit. We don’t have the laws or teeth behind the laws we have to protect the public. Case in point: the subprime mortgage fiasco and resultant credit crisis which led to the non-sensical bailout. Congress should have given the money directly to the consumers as in trickle up economics. But I digress.

If you read my last blog, The Story #18, you’ll see I’ve concluded that the root cause of my illness is a lack of or damaged nerve cells in my intestinal muscles needed to keep stool moving to the anus. This is likely Hirschsprung’s disease, which I’ve had since birth. My lack of intestinal motility due to damaged nerve cells could also be caused by volvulus, or a twisting of my intestines causing a partial blockage, which is cutting off the blood supply to my colon and depriving the nerve cells of the oxygen they need to function properly. The damage to my nerve cells could also be due to my HHV-6 herpes activated viral infection, which causes demyelination of nerve cells.

Damaged nerve cells throughout my body explains multiple ailments including the degeneration of my spine and CNS, which controls all bodily functions. The build up of fecal matter and toxins in my gut due to lack of motility due to damaged nerve cells is causing multiple infections, and that has a snowball effect on the immune system. The whole thing is wrecking havoc on my ability to absorb nutrients…etc. Viral infection affecting my nerve cells explains everything.

Now I just have to find a doctor who knows anything about treating viral infections and convince him of my findings. Do you think it would help if I had a medical degree? Do you think there are any doctors willing to help a pauper without medical insurance and whose egos won’t get too bruised by the fact that a layperson came up with the correct diagnosis? Don’t forget that doctors’ failure to diagnose and treat me in the first place is the reason I am now disabled and broke.

I can’t count the number of doctors who shut down the minute I discussed something outside of their limited scope of knowledge or pointed out a positive test result from a test they didn’t order themselves. The whole appointment became about why hadn’t they thought to order that test. Forget the fact that they filed my test reports without reading or analyzing them or that they didn’t put two seconds into thinking about what was causing my illness or even believing I was that ill at all. To them I was just another patient with inexplicable idiopathic illness.

Where’s the passion in medicine? The curiosity? The thing that may have motivated doctors to go into the profession in the first place? It got drenched with the realization that all that mattered in life was money. And when money to maintain your Harry Angstrom lifestyle is your motivating factor for being, it’s no wonder that doctors stopped putting forth any effort to do anything for their patients besides collecting fees.

Health care is our next big meltdown. It’s presently operating under the same premise that brought us the subprime mortgage fiasco and current credit crisis. Everything was about making money rather than about providing a service or product.

I’d like to try to change this direction by bringing my story to the public as a representation of what tens of thousands of people are going through in our great nation as if they were members of a secret underground. Like me, they lack the health and vitality and funds needed to make an effective statement. So they suffer in silence while knowing onlookers who feel helpless to act do nothing.

I don’t care about privacy. I have nothing left to lose and everything to gain by telling my story.

We’ll never solve the health care crisis without reforming how doctors practice medicine. Reform that deals solely with medical care funding and insurance is like giving the banks and lending institutions money without adjusting the laws that regulate how they practice lending. What did the banks do with the bailout money? Shored up their balance sheets and paid shareholders. Now Congress is surprised that the shysters who perpetrated monetary fraud lacked scruples and ethics. Come on.

People right away criticize my motives as simply advocating universal health care. Wrong. I’m for real, actual health care regardless of who pays for it. But if you ask me, if health care is a right, it should be a non-profit, self-sustaining business.

Presently, our system is largely based on shuffling patients from doctor to doctor. Few patients benefit. Many patients may think they benefit under our current system when they are really only being prescribed medicines that mask their symptoms so they feel better now. But the repercussions from taking these medicines will become apparent in later years because the root cause of disease was never addressed. What’s wrong is still going on undetected, undiagnosed and wrecking eventual disabling havoc. I know. It happened to me, and it’s happening to all those other people you can read about on the hundreds of medical self-help forums on the internet.

Thank God for Google Search! It helped me figure out what was causing my spine and central nervous system to degenerate. It’s helping me keep abreast of the latest treatments, clinical studies and on-going medical research. It put followers in touch with me for moral support. It helped me find patient advocacy groups, who tried to help me find competent medical help.

All I need now is the Stephen Colbert bump to progress.