I'm angry this morning. Generally, my Op-Ed rants aren't personal in nature, but address the direction of policies repeated over and over....with the same catastrophic results. But, today is different. This one has touched very close to home for me. I'm talking about the American, "most expensive and far from best medical care industry in the world." I've had to process this one for a few days, wishing to stay as objective as possible, so during my usual "morning creative writing time," here goes.
Out of respect for medical confidentiality for people I know, I'm not going to give specifics, but will my own story, not because this is about me, but because of the ironic parallel of the story to my own. I will just say that the individual involved was a former in-law of mine, whom I liked a lot. And I will mention that the story takes place in a major metropolitan area of the U.S., at a well known and respected hospital, where it's claimed the doctors are some of the best available in the region. I will also point out that this individual is not one of "America's poor and uninsured." Quite to the contrary. He owned his own very successful small business for over 45 years and had some of the best medical insurance available....the "gold card," so to speak. I must also say that this is not an "isolated incident," but I've heard the story repeated many times by many other people.
A few months ago, I learned that this man was experiencing some significant medical issues. Among those issues, was a significant respiratory problem. Yes, he has a long history of tobacco use. He began routine bouts with pneumonia...in and out of the hospital quite often. He was assigned a pulmonary specialist...a team of them, actually and was diagnosed with C.O.P.D. Chronic Obstructive Pulmonary Disease. Not uncommon for smokers. Treatments were initiated and repeated, with little to no relief. Other symptoms were present and overlooked or attributed to the C.O.P.D. and repeated attacks. Weight loss, inability to eat, issues with speech and ultimately, resulting on his being placed on a feeding tube for a few months. He was not responding to treatment, but treatment continued...various tests and scans were performed...negative results and the condition worsened.
His family, concerned and observing the symptoms and his condition on a daily basis, began to recognize something in his case which looked very familiar to them. They recognized that he was having symptoms very similar to what they watched me go through for several years. I had not reached the "feeding tube" stage, but as more and more symptoms appeared in him, they saw a parallel more every day. Finally, they contacted me and explained his symptoms and the progression and lack of progress with treatment. The more I listened, the more familiar the story sounded. Yes, I had been through the same experiences. I sent them some information about my own disease and urged them to read it and see if they saw a pattern with him. They called to tell me the symptoms were identical to what he was encountering.
I must admit, I found it difficult to believe, as my condition is extremely uncommon, but there was no denying that even a layman could see the similarities. My advice to the family was to ask the pulmonary specialist for a referral to a Neurologist. The family immediately made the request to the primary physician and the pulmonary specialist. They explained the similarities to my situation and were ignored. The medical providers insisted he had C.O.P.D. and did not require any testing nor a Neurologist. My advice to them was to become more assertive...move from a "request," to a "demand." Again, they were denied. After nearly two months of repeated demands, they were finally granted a referral to a Neurologist. They waited another three weeks to have a Neurologist examine the man...all the while, his condition continued to worsen with pulmonary treatment and physical therapy.
A Neurologist finally arrived to do an examination. A cursory examination by the Neurologist....taking a total of about five minutes....validated our concerns. Whatever the man suffered, it was NOT C.O.P.D. He had a neurological disorder...narrowed down by the brief examination....to most likely be either ALS, or Amyotrophic Lateral Sclerosis....or a relative of that disease....the one I have....Myasthenia Gravis. Since Myasthenia Gravis has several variations, one of three different tests would be necessary for confirmation. The first is a simple blood test...rarely run in a blood test panel...for reasons I don't understand. In any event, certainly less expensive that the barrage of CT scans and MRI scans which had already been done. Now, wait another two weeks to get the result of the tests...as his condition worsened.
Ultimately, the test results validated that he had Myasthenia Gravis, rather than ALS. A good thing, since neither have a cure, but MG is treatable, while ALS is progressive, no matter what. Under the orders from the Neurologist, medication began for treatment of Mysathenia Gravis. And as is the case with the medication, there was improvement within a matter of hours. Unfortunately, "too little, too late." On August 27th, the MG hit the group of chest muscles, which ceases the ability to breathe...and he died. Damned!! Anger and flashbacks for me, as to my own treatment by this wonderful medical system we have.
This was a case of needless suffering and death. Not because of a lack of medical insurance coverage nor an non-treatable condition. This death is attributable to the arrogance bred into those entering the medical profession in this country. This death came about because doctors are not taught to listen to patients nor family. The insurance industry allocates "time slots," for patients....the doctor is going to devote however many minutes of examination the system dictates and in that time, there is no allocation to listen to anyone. My own doctor is very good and we have many conversations...often he will tell me stories about his time in medical school. This case reminded me of a story he told me about a professor he had in school. The professor had told him that the school could make a doctor out of anyone. What they could not teach was the ability to "diagnose using intuition and the senses." That gift comes from inside the person....the ability to be a good detective. Not to rely solely on all the electronic gadgets and printouts....but to listen to the patient....with an open mind. "The devil is often in the details." Those overlooked, often elusive clues. That ability is what makes a "real doctor."
I realize that this story is longer by far than one of my usual editorials...but there is a long and potential life saving story to tell. It's not about "me," but rather about the need for people to be aggressive with medical matters. To question and challenge "medical authority." Something we are programmed not to do....question authority. But, your life may depend on doing so.
I'm not going to go into extensive detail about Myasthenia Gravis...anyone can research that for themselves. I am going to give a brief description, however, as there is a need for the disease to be recognized and more public awareness. Too many people die needlessly from it. Essentially, it is an autoimmune/neurological disease. Very uncommon...little is known about it and little research has been done. What is known, is that there are no common elements related to the disease. It strikes people of all backgrounds...more women than men....normally, women in their 30's and men over 60. There is no cure, however there is treatment, if diagnosed in time. The only initial symptom is usually one eyelid that will slightly "droop" for a short time. The disease can mimic several other conditions and in the early stages, can go in and out of remission, almost daily....and with no warning. In my case, it's due to an extremely strong immune system, which I've always had...and has saved my life a time or two. The immune system becomes so strong, it begins attacking your own body. Myasthenia gravis is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction—the place where nerve cells connect with the muscles they control. Normally when impulses travel down the nerve, the nerve endings release a neurotransmitter substance called acetylcholine. Acetylcholine travels from the neuromuscular junction and binds to acetylcholine receptors which are activated and generate a muscle contraction.
In Myasthenia Gravis, antibodies block, alter, or destroy the receptors for acetylcholine at the neuromuscular junction, which prevents the muscle contraction from occurring. These antibodies are produced by the body's own immune system. Myasthenia gravis is an autoimmune disease because the immune system—which normally protects the body from foreign organisms—mistakenly attacks itself. Simply put....the brain signals cannot communicate with the muscle receptors, so the muscles do not function. Two or three repetitions of a muscle feels like you have been using the muscle all day. The muscle tires and must rest. Commonly, the muscles are attacked in groups. Facial muscles usually are attacked first...making it difficult to chew, swallow, speak and double vision is common. It will progress...affecting muscle movement in the arms and hands. Next, it may affect the leg and lower body muscles. Eventually, untreated, it will take the muscles in the chest so one cannot breathe...as happened to the man in this story.
My case was a bit complicated, due to other neurological issues. At first, I was having issues with my arms and hands. My own physician, without tests, determined it was an orthopedic issue and referred me to an orthopedic specialist. He, without performing any tests at all began physical therapy and wanted to put me in traction. I refused and demanded that an MRI scan must be done before I would agree to any treatment. An MRI was done and showed that the discs were gone in six of the seven vertebra in my neck and that two vertebra were pinching the spinal cord in half. I was immediately transferred to a Neurosurgeon. Six of the seven vertebra in my neck had to be fused and the two vertebra drilled out to decompress the spinal cord. The condition was serious enough that the surgery was done on an emergency basis...no wait time and the Neurosurgeon said if I had agreed to the traction treatment, most likely it would have severed the spinal cord, leaving me totally paralyzed. So much for the orthopedic "specialist" and his diagnosis. The assumption was that this surgery would "cure" the problem with my hands and arms, given time for the nerves to recover. It did not.
Back to my regular physician...and I began going into pneumonia...hospitalized two to three times a year...often quite serious, requiring Intensive Care Unit treatment. Pulmonary specialist brought in and I was diagnosed with C.O.P.D., just as the man in this story. Muscle degeneration continued to worsen until I lost all use of my arms and hands and much of the time, lost my speech ability. A frustrating situation for someone with a sound mind, as the ability to communicate was often lost. Doctors would treat me as if I were mentally incompetent, since I couldn't communicate. This generated a lot of anger inside me. I would lose muscle function...make an appointment with my doctor and by the time I saw him, I would have some function back. My own physician had little interest and ultimately, I gave him a brief synopsis as to my thoughts on his medical skills. Not in a very diplomatic manner, but I had been going through this with him for nearly five years.
In that final battle, my primary physician decided he had the answer. He once more admitted me to the hospital...not telling me exactly what he planned to do. Fortunately for me, thanks to my many trips to the hospital, I had gotten to know two or three of the registered nurses there who liked me quite well. Always said I was an excellent and easy going patient. Not one...but two of those nurses had slipped into my room, once they had read the doctor's instructions. He had determined my condition was psychological and planned to have me put in a psychological ward lock down. BUT, they advised me that it could not be done without my consent...and they assured me there was nothing wrong with my mental state. Well, that's a relief! Both advised me to refuse the treatment plan...and both brought me a list with names of a couple of other doctors on it. Confidentially, they both advised me that my physician was a very serious alcoholic and was no longer allowed to perform medical procedures in the hospital.....nor even make hospital rounds. And, he is a doctor attached to the medical group of that very hospital! The "suggestion" was that I fire the doctor and choose one from the list I was given, as they knew those doctors to be good. I contacted a doctor from their list....an Internal Medicine specialist who agreed to take me as a patient. I then called my doctor and gave him the "Donald Trump" treatment...."You're fired!" Naturally, I refused the mental ward admittance and likewise, refused to give up the sources of my decision.
Going over my medical history and symptoms, the new doctor told me there was one test which had never been done and he would like to do a simple blood test, if I would agree. He was so confident of my condition, he said he was almost willing to try some medication even before the test results were confirmed. I've always been a bit of a medical anomaly, even to the old doctor. At 71 years of age, I've never been sick in my life and all of the tests run have shown that my vitals and organs are like someone about 30 years of age. Even brain scans indicated there was less than normal aging. Again, attributed to a very potent immune system.
Tests confirmed the Myasthenia Gravis disease within a couple of days. Tests were then run to determine the cause of the repeated pulmonary problems. Results showed that the weakened muscles in the throat had affected chewing and I had been aspirating food into my lungs for all these years, bringing on pneumonia, further weakening my system. Medication was administered and within hours, I began to recover use of my hands and arms, as well as speech. Not one incidence of pneumonia now in over two years. Once more, I can drive, cook and do much to care for myself, although there is a lot of muscle weakness and fatigue. Currently, we are looking at beginning Immunoglobulin infusions, as by replacing healthy Immunoglobulin with the diseased Immunoglobulin, where the disease resides...I should recover more functioning and less muscle fatigue.
The cost of this experience has been great...both physically and emotionally. Like many other patients I have met, life changes drastically. There is a lot of frustration, not being able to accomplish all I want to do. Some loss of independence and even a destroyed marriage, due to not knowing what was wrong with me. I have participated in many conferences and seminars related to Myasthenia Gravis and listened to the experiences of others and I consider myself quite fortunate. It's heartbreaking to talk with young people....a lot of young women who had careers, have young families to care for and suddenly find themselves with no income, unable to care for their children and often with lost marriages. And looking at a lifetime ahead of them with apprehension and anxiety. On the other side of the coin, they are being treated and are still breathing....unlike the man in my story today.
My message in this editorial story is simple. The "most expensive medical system in the world" is far from perfect. It's a business and we are not people, but products. We are a twenty minute allocated time slot for doctors, thanks to insurance company rules. You may think that the A.C.A. program...."Obamacare" for you conservatives....isn't working. Well, it's not perfect, but neither is the system we have. We need a complete overhaul of the system, beginning with the teaching in medical schools. New doctors need to be taught to listen to people....to become good detectives....or find some other field of work where they can be the "ultimate authority." We have a RIGHT to question doctors....we have a RIGHT to demand a second opinion and we must exercise that authority or risk our lives.
I've received medical treatment both in this profit based American medical system and in countries with socialized medicine. My own personal experiences have taught me that people who go into the medical profession in those other countries are there because they want to practice medicine.....not merely be there for the "profit" and be told how to practice medicine in the most financially satisfying manner.
I'm always open to questions or comments.
© Copyright Stan G. Kain