Friday, May 7, 2010

So little funding...... Beth Ann Robinson, Indiana

Beth Ann Robinson, Indiana

I am a 57-year-old female with Cirrhosis caused by Hepatitis C caused by blood transfusions in 1975, 1976, or 1984. (Genotype 1b, viral load--1 million, Stage 4A liver disease) After spending many months with digestive upsets, my family doctor referred me to an internist for help with elevated liver enzymes. After trying many things, it was decided that I must have gallstones; and I was referred to a surgeon. At the same time my gallbladder was removed, a liver biopsy was done. This was in 1989, and the diagnosis of Hepatitis C was made.

I spent several months trying to find a liver specialist who had treated more than a handful of patients with this ailment. Finally, I saw a hepatologist at the Indiana University Medical Center who in 1990 had treated approximately 150 patients with interferon. At that time, the only treatment offered was six months of interferon monotherapy. I have taken several courses of treatment, but that one was the worst! I lost 20 pounds in 6 months. Although I responded tothe treatment, I relapsed immediately.

During the next few years, I searched and searched for information. I joined the American Liver Foundation and later the Hepatitis Foundation International to which I still belong. Information was difficult to find and slow in forthcoming. About fourteen (14) years ago, I became one of the original members of a hepatitis support group in Indianapolis. As we became more organized and shared our resources, we learned more about the disease and the latest in battling it. The following is a list of some of the best books I have read regarding HCV in the past 20 years: Sweet Reprieve by Frank Maier (true story of transplant due to Hep C), Living with Hepatitis C - A Survivor’s Guide by Gregory Everson, The Hepatitis C Handbook by Matthew Dolan, and The Kokopelli Theory by Kevin Correa (fiction--but very interesting!). Also, I ave subscribed to Hepatitis/Liver Health magazine which has very up-to-date information on everything from diet to treatment to transplants.

Lifestyle changes for me were minimal. I changed my diet by eating more fruits and veggies, more baked meats, and eliminating foods high in fat content. That included fried foods, dairy products high in fat, and chocolate. As I was already a teetotaler and had never even smoked marijuana, abstaining from alcohol and drug use was not a problem for me. However, learning to pace myself and rest more were challenges. At the time of diagnosis, I was working a full-time job as well as a part-time job, and my children were ages 13 and 10.

Liver biopsies were repeated in 1996 (stage 3) and in 2000 (stage 4). The last biopsy was rather scary as my blood pressure went extremely low afterward requiring two injections of atropine to regulate it. Instead of the usual 4-hour outpatient stint for a biopsy, I was at the hospital for 10 hours.
I began the Peg-Intron/Ribavirin combination therapy in mid-2001, but I was quickly withdrawn from treatment due to critically low white blood cell and platelet counts. A bone marrow biopsy determined that Hepatitis C had damaged my bone marrow. Therefore, when I take treatment, I must use growth factors (also called rescue drugs) such as Procrit and Neupogen.

During 2002, I completed one year of Peg-Intron/Ribavirin combo therapy. Even though the virus was non-detectable at 12 weeks and at the end of treatment, it reared its ugly head six months later! Important tips that I learned during this course of treatment included drinking 2 liters of water per day and exercising. It was difficult to drink that much water at first, but now I find myself thirsty for it all of the time. If I can't get outside for a walk, I have a treadmill that I use for walking at a slow pace for 10 minutes per day. Exercising seems to greatly alleviate the irritability caused by the interferon.

Problems I have encountered due to the disease and interferon treatment include: encephalopathy (I take lactulose for the brain fog), hypothyroidism (caused by interferon - take Synthroid), leg and arm cramps (take vitamin E, and Darvocette), severe osteoporosis (take Fosamax), migraines (take Imitrex), continued low blood counts (take lots of vitamins), arthritis, Dupuytren's syndrome (thickening of tendons in hands), loss of muscle mass, insomnia and low stamina and weakness for which I take a lot of naps.

From January, 2004, through 2006, I was on low-dose Peg-Intron maintenance therapy in order to postpone a transplant or at least buy time for other treatment options.  Finally, I lost so much weight that I had to cease the maintenance program. Since that time, there have never been any promising treatments for me.

So little funding has been given to the Hepatitis C virus over the years, that I am doubtful that I will ever be offered treatment again. In all likelihood, the cirrhosis will progress to liver cancer or my liver will fail. There is a chance that I may require a liver transplant; but, of course, the new liver will become infected with the Hepatitis C virus again.