During a routine day at work, I was overcome by heat and rushed to the hospital because of heat exhaustion. My doctor decided to run some lab tests to rule out problems with my heart. My heart was fine but the lab results showed elevated liver enzymes. Fact is, they were four times the normal limit!
My family doctor referred me to a Gastro specialist from Denver. The appointment was made and the best treatment for me was determined to be Interferon Alpha-2b at 3 million units 3 times a week. My family doctor's nurse was able to get me enrolled in a pilot program and the drugs were sent to me at no charge. I was required to keep daily logs of how I was feeling throughout the drug therapy.
This "wonderful" nurse has since retired but we keep in touch to this day.
While on Interferon therapy, I felt as though I had the flu constantly and developed a great sensitivity to sunlight. Bloodwork was done every 2 weeks. The therapy caused me massive bone marrow depletion and my eyesight diminished greatly. The liver enzymes never dropped as hoped. After 10 months of this therapy, I was taken off the Interferon therapy and declared a "non-responder".
With no other treatments available then, I was monitored serially with bloodwork. Throughout all of this, I continued to work 14 to 18 hour days. I was not having much trouble dealing with HCV (or Hepatitis non-A, non-B as it was previously termed). I had biopsies every 6 months and these gradually showed more and more iron stores and increasing cirrhosis. In November of 1996, my doctor decided I needed to see a different specialist, so he made me an appointment with a Gastro Enterologist in Kearney, Nebraska.
On the appointment date, I met with the specialist and she did a lot of tests and told me she was going to refer me to the Transplant Program at the University of Nebraska Medical Center in Omaha, Nebraka. She explained what type of tests I would have to go through and how the transplant board met and decided if I would be considered as a candidate for the transplant program there. This test period would take 2 days to complete, so we had to arrange time off work for my wife and I both.
We drove to Omaha the afternoon before the appointment and stayed at a motel there. The next morning, the tests began at 8 A.M. and ended at 5 P.M. I had been unable to eat or drink anything all day long, due to the tests involved!! The next day consisted of more tests. Finally, at 2 P.M. they told us we could leave. And leave, we did--all the way back home, virtually non-stop the entire 350 miles (I was never so glad to leave somewhere in all my life!)
It was three days later when I got the call from the transplant center that confirmed my acceptance into their program. So, what does one do then--jump for joy at being accepted into their program or feel miserable knowing the only chance for survival is a liver transplant?!
That was 20 months ago and I am still waiting for that call saying, "come to the hospital as soon as possible, we have a liver for you!" This has been a very long wait and without my wonderful wife and family to support me I would not have been able to cope as well as I have.
There is so much information and so many people out there on the web to offer support. It is simply unbelievable! Words cannot express how I feel about all of you out there in the "virtual world" who have been there cheering me on, calming my fears, offering information and insight or just listening to me. I thank you all. (more to come on my story...)
September 25, 1998, I received my long awaited liver transplant. You can read about my experience by clicking on this link: "Reel Miracle"