Tuesday, March 16, 2010

Daryl's Story

I would like to begin my story with a salute to all of those people that have helped me, and others. Diagnosed with HCV, it has never mattered to me how someone was infected. I know people that used drugs and shared needles, as well as people that have received the virus through tainted blood transfusions, and none of it matters to me. What matters most is that people with HCV need help, and that help takes many forms. I am fortunate enough not to have the severe financial burden that many with this disease face. I can’t imagine what it must feel like to face HCV without medical options as well as any semblance of a support system, which I believe is so very important. I am deeply discouraged by the stigma that we all face when we are diagnosed with HCV.

I never knew many things about this disease until I was diagnosed. I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus. The journey actually began when I was hospitalized two years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.

In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus. The second blood test confirmed that I did have HepC. That was in July 2009.

I was devastated by this news. The next couple of months were very difficult for me. In my mind my life was over. I am 55 years old, with so much I want to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.

The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1b, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get. The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable. The only thing they found during screening was that I have a condition called optic nerve drusen.

I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate. As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible. I want to continue to be myself, and not be defined by this disease. Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship.

Update on Daryl's Treatment Journey
Update of my story as of April 18, 2010
Day 31 of treatment for HCV, genotype 1a
Clinical Trial with new drug and SOC

I started treatment March 19th. It was a little scary, but I had long since made up my mind to treat. Determined I was. Because I am in a clinical trial, the first shot was done at the Institute where I am being treated, and that made it a little easier. I had no side effects until on the third day. It started with itchiness not unfamiliar to me, and progressed to the point that night where I felt the side effects that are often called flu-like. Worse flu I ever had.

For the next week and a half I had all kinds of strange things going on all over my body. I had severe shivers, and periods not long after taking the Copegus, where I felt extremely hyper. Another strange sensation was that everything smelled toxic, including me. I joked with my wife that I was a walking toxic waste dump. I use humor to deal with adversity, sometimes it works for me. Because of the smells, I could not, did not, want to eat. I lost 8 pounds in 9 days. I used ensure, drank lots of water and Gatorade, and by the second week my sense of smell started to return. I have since gotten my appetite back somewhat, and stopped the weight loss. Since then I have had an easier time with the treatment than I had in those first couple of weeks. I am not saying it was easy, and it still is not easy. I have months of treatment ahead. I have had some severe pain from an old injury, and we had to sort that out with the right meeds.That was not easy, and in fact was quite unpleasant. I have also had bouts of crying and incidents of rage, but I have wrestled with that fairly well so far.

My short term memory is very bad, and I hope it returns after treatment stops.
Having said all that, it has been generally tolerable so far. I do get some relief now and again from feeling sick and extremely tired. Some of the time I even feel better than I did before treatment started. I had suffered with symptoms from Chronic HCV for a while before diagnosis and treatment started.

One thing that has made it all much easier for me is the warmth and friendship I have found in a community of people at Janis and Friends. Betty has become a dear friend, and an inspiration to me. These people have saved my life. My wife has been solid as a rock behind me all the way in this journey; I could not have managed without her love and kindness. There are others, including my treatment nurse, the doctors, and on and on…there have been many. I am blessed for that. I also know how lucky I have been, and never lose sight of the reality that many are not so lucky in dealing with HCV. This saddens me.

At my two week tests, my viral load had dropped by 2.85 logs. It had come down from over 5 million to 7000 in two weeks. Given my genotype, this is apparently very good news by all accounts. This information was magic to me. I am convinced that I am getting the new drugs in the trial, not the placebo. I am in touch with others in the same trial that have experienced similar results. Not all have, unfortunately.

I want to say that there is hope for the future with new treatments. With any luck, some of these drugs are near approval for use with the current the SOC treatment.

We have a long road ahead, and I know it will not be an easy time. We need to raise awareness, educate, and bring the resources needed, to the people with this awful disease. The stigma and ignorance will be present for some time to come I am afraid. But if we talk about it, and keep a dialogue going, the narrative will change in time. It is my dream that some day we will be able to look back on our hard-fought battles with pride and dignity. And HCV will be a thing of the past. I hope that the politicians and decision-makers hear our message loud and clear.

We all need to help each other. We all deserve, as human beings, to have a chance to have good health. This is a basic human right in my opinion. I hope that I am successful in spreading hope to those in this community, and beyond, to include the families and friends of those infected.
Although it seems like there is no hope at times, and Oh- how I know how that feels. There is hope, and I believe it strongly.

I must..............