You 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, chronologically portrayed in blogs from #1 on, 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, at whom should I be mad?

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’d run 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 chronic intestinal pseudo-obstruction among other GI disorders. 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 repercussion of doing repetitive, assembly line procedures. The focus shifts from the patient to getting through all the procedures timely.

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.

I got too depressed to keep writing about my experiences for now. I figured 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. That means if we all get swine flu or ebola, we’re still 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 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, 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 a month 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 August 2009.

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 next 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 hadn’t occurred 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 typically 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. It’s as if the doctor and I are living in two separate worlds, and neither can fathom what it’s like for the other.

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: “Whom is the doctor working for?” The patient or the medical insurance company?

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 losing my current home. 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 or incoherent on pain meds.

As you can see, the story’s ending has yet to unfold. And that’s where you come in. Tell me how you see the story ending, and then make it so.

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 and who is willing to consult medical experts on conditions not typically encountered.

You can 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 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.

~ by doctorblue on April 29, 2009.