SEARCHING FOR THE CURE!
A PERSONAL HISTORY
After the birth of my first son in 1986 I did the responsible thing and applied for life insurance. The results of my physical indicated that I had a little known liver disease called Hepatitis non A Non B, a viral disease. I had probably been infected in the mid-sixties, and years of hard drinking had aggravated the disease. I took my doctor's advice and gradually cut back on my drinking to the point where I quit completely in 1990.
By the time I was diagnosed with Hep C (when a test was developed in 1991), I was a happily married man, father to two beautiful, healthy sons, and ready to deal with my health. At that time there wasn't much information available, and few treatments with much promise, so I became a vegetarian, sought out alternative methods to strengthen my immune system and exercised daily. I was not in any rush to do a liver biopsy or chemotherapy, and was easily convinced that it was not necessary. I now feel very strongly that it was a mistake not to have seen a hepatologist as well.
As I now know, a liver biopsy is much more informative than blood tests (in fact, my blood tests improved weeks before my liver failed). A GI doctor or a hepatologist will also do regular tests for liver cancer. Hep C increases the risk factor for liver cancer, so it is very important to be screened for it on a regular basis; cancer is much more likely to be deadly when found late.
1995 was a very difficult year for me. Within weeks I lost Jerry and my father-in-law, who died after a brief battle with liver cancer caused from Hepatitis C. My family was racked with grief from these two huge losses. I also had the unpleasant task of dealing with the fact that there was not going to be any touring income to cover the unbelievably large overhead at Grateful Dead Productions. I believe that stress of those times lit the fuse of my hepatitis and allowed the virus to rage. I feel that my major decline started in 1995 and by 1998 I was in end-stage liver disease, and knew I'd have to have a transplant.
It was easy to be in denial about my health during those years; there was so much stress, and I was in my mid-fifties, so I blamed a lot of the symptoms on aging. I was thin and losing muscle but I was still very active. I know now that I had a small internal bleed on the road with The Other Ones, but at the time I thought it was caused by the awful tour food.
In early September 1998, one evening after dinner I suddenly felt horribly ill and then started vomiting copious amounts of blood. I lost a third of my blood that night, and for the next month had periodic internal bleeding and blood transfusions. This was the beginning of what we called crisis mode. Jill didn't leave my side for three months for fear I would hemorrhage; she slept on the floor next to me at the hospital because I was experiencing one crisis after another- she was told three different times that I very likely wouldn't make it through the night.
After a month of emergency room visits and weeks of hospital stays I had a shunt put in to help relieve the pressure on my liver. The shunt helped for awhile and I was able to gain a little weight back. However, within months it clogged up and I was back in a dangerous position. Meanwhile, we did a lot of research on liver transplant centers and decided to list with the Mayo Clinic in Jacksonville, FL. They had an incredible team of doctors that I connected with right away, a short list and a small nurturing hospital for recovery.
I prepared for my surgery with an excellent diet, short walks in the fresh air, meditation and guided imagery. My doctors encouraged me to choose music to play during the operation, and I also had the powerful love and healing energy and prayers of many caring people. I was watching dolphins play in the ocean when my doctor called and told me to come in. My surgery was about 3 1/2 hours and I did really well- I was out of the ICU within 6 hours and actually walking within 12 hours. I was out of the hospital in six days (on Christmas eve), although I had some rejection so I had to go daily for treatment.
Even with a new liver, I will always have Hepatitis C, and have seen it flare up twice since my transplant. The first time was because of the steroids they gave me for the rejection; it took months for the numbers to stabilize. The second time, after the fall 2000 tour, I came home with a sore throat that I couldn't shake, and after a few months we discovered that I had a fungal infection. I am more susceptible to fungus infections because my long-term anti-biotic and anti-rejection medication protocols suppress my immune system. Since it took so long to identify and treat the infection, my immune system was stressed to the point that the virus flared up. A recent liver biopsy showed, however, that now my liver is doing great and my numbers are all back to normal.
I have learned a lot about what I can do to take care of myself and to protect the gifts I have been given. I was blessed to have received the blood of many giving people, and the ultimate gift of a liver; this from a young man who had told his mother that he wanted to be an organ donor only a few months before he died in an accident.
I encourage you all to: Be tested for Hepatitis C.
If you test positive see a Hepatologist (liver specialist) or a Gastroenterologist.
Ask your doctor if you should be screened regularly for liver cancer.
If your doctor suggests a liver biopsy, do it (it doesn't hurt and it is very important).
DON'T DRINK ALCOHOL! (it's like pouring gasoline on a open fire)
Exercise and eat a healthy diet.
Control the stress in your life.
Keep your immune system strong.
I believe that it is very important to be informed. As in most things in life there isn't only one right path; you should learn as much as you can from doctors, books, people who have the disease, the Internet; but only you can choose the right path for you. Many people choose to be treated with interferon/ribivarin, other go the holistic path, others do both. Talk to your doctor about what is right for you.
We are opening up a discussion on Hepatitis C with the hope that the many people who have Hep C or love someone with Hep C can get support and strength from others. Please keep the discussion kind and respectful. Remember that this will not be a medical site but only a support group. Always check any tips with your doctor!! Many doctors are well informed about alternative treatments and will support a treatment that may help and warn you away from something that could do damage.
Hepatitis C is a lifelong challenge and your doctor should be someone you feel comfortable with and will really listen to your concerns.
Please help us support Hepatitis C research; if you can't make our benefit, you can still send a contribution to:
Unbroken Chain Foundation
Hepatitis C Research
PO Box 10188
San Rafael, CA 94912
Peace & Love