Their number one complaint, other than having these horrible diseases, is having terrible doctors! I have formed the opinion that many of today's General Practitioners are quite bewildered at the prospect of treating their patients who suffer from Hepatitis.
If you do not seek treatment through a specialist, you are left with what I like to call, the diagnostic, antibiotic pushing, ears nose and throat peering, prescription writing, hit and miss doctor. Or worse yet the emergency room Doc in the box who sees an average of 60 different complaints in the first part of the day, grabbing a quick lunch, returning to another 100 or so griping people with major aches and pains. After a while it must all be a blur of human flesh.
My sympathy runs deep for these dedicated men and women who risk their own health in search of helping others get control over their physical demons. How can you take a patient with common complaints such as nausea, vomiting, head aches and fatigue then choose the correct blood tests to determine the origin of the problem? I mean if they tested for everything that it could possibly fit those vague symptoms, our lab bills would run into the thousands! What makes Hepatitis so different, is that you might not experience any symptoms except a slight fatigue after mild exercise.
Some Physicians are even telling their patients that these viruses are only a problem years later after the initial infection. They can dismiss the importance of regular tests and follow up treatment. Though even if you are given the advice to be tested, more often than not the doctors are not checking for anything other than your ALT levels, which is just the beginning of a battery of tests that are needed to discover the extent of the damage occurring in the liver.
Then there are some HMO's that are discouraging their patients from getting the expensive treatment siting that there is minimal value in the current drugs available and not worth the discomfort and serious side effects over the long haul. Or better yet, having your HMO deny claims for Interferon and Ribavirin treatment because the patient happens to be older than the current acceptable cut off AGE! Most insurance companies seem to have a problem with treating anyone over the age of 60. Age issues aside, there are many people who just don't have health coverage at all, so fighting with an insurance company is a step up from what many people have to deal with like the lack of any type of treatment.
Like so many diseases, Hepatitis C treatment is far from a cure. There are those wonderful miracle success stories we hear about, like Naomi Judd and her current negative status. These tales give the average HCV victim hope and encouragement but unfortunately not all of those that test positive can be helped by the drugs that are being used today. That is of course if you have been correctly diagnosed at all! Hepatitis C can effect the body in the strangest ways that make the symptoms mimic so many other diseases and aliments. Finding out that you have the disease is sometimes more difficult than treating the disease. Then discovering what the possible symptoms you can expect to experience over time can vary greatly on who you go to for care.
For instance a woman recently wrote to me to thank me for giving out information about a symptom called Brain Fog. This subject is somewhat disheartening for many people because it effects many aspects of our lives. It's as though the person suffering from Brain Fog has trouble remembering, thinking clearly and forming a thought properly. It's a side effect of the HCV and HBV that many people and doctors are unaware of. This woman was a high-ranking bank executive who, until recently when she gave blood only to discover she was Hepatitis C positive, was a multitasked, computer wizard and highly functional team player. Now she has problems every so often just carrying on the simplest of conversations because she can't recall what subject she was discussing. Her mind wonders which frustrates her immensely. She thought she was going out of her mind. She would tell her doctor that she was sometimes out of sorts with her thoughts and he told her she needed to rest more often. He also told her that this was not a result of HCV. Studies have shown that this valid symptom is cause by liver malfunction that cannot filter out toxins. The liver can also impede the oxygen flow to the brain which can make many systems in the body fail.
Then there was the firefighter who was pricked by an infected needle while on the job. His doctor ran the usual HIV/AIDS tests and told the firefighter after a few years of testing negative, more than likely he wouldn't have to worry about testing himself anymore, but he did recommend a test two times a year, just to be safe. His GP never did a test for HCV and six years after the initial infection, the firefighter complained of fatigue and nausea. When he went for the routine six month check up and HIV test, his regular doctor was on vacation so he was seen by a fresh-out-of med-school doctor. The firefighter said he was feeling a little tired lately but attributed it to being almost 50 years old. She suggested the Hepatitis panel and found out that he had been exposed to Hepatitis B and C. When his regular doctor returned there were some heated conversations where the regular doctor resented the new doc's interference. Some physicians can be so territorial!
Even when you are properly diagnosed with Hepatitis, correctly genotyped, levels of infection evaluated and offered drug treatment, there is still so much information available to you. Depending on your community, you may have a support group in your area. There are pamphlets and booklets available from the American Liver Foundation and other organizations but you will discover that there is some misinformation floating about so doing your homework is critical! Finding a helpful support group either online or locally is also very important. Just having someone to share your experiences with can be the best medicine of all.
With the age of computers and the information highway being a beacon of light in an other wise darken existence, the Internet has brought the facts to patients sometimes even before our doctors learn about it. Researching is now done by patients more often than med-students. In fact, on average, Hepatitis C patients often know more about HCV than there own doctors do.
For now we know, that the best advocate of our own health, is ourselves! Keep informed because knowledge is power. You know there really is a reason that they call it PRACTICING MEDICINE!!
Written by Mark Riegel, MD
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