January 1996 Bulletin

Fellow tells need for organ donors

Hepatitis B changes life from surgeon to advocate

by Lawrence F. McManus, MD

About 15 years ago, I was a practicing orthopaedic surgeon in a rural community in South Carolina. Having turned 40 and leaving a large group practice, the future looked promising. After a year and a half, my practice was growing and my family was happy with our new lifestyle. Our problem began with a form from the American Red Cross in September of 1982. Six weeks previously, my wife had donated blood for a neighbor. The letter thanked her for her donation, but requested that she never give blood again. After further evaluation by a close friend, a gastroenterologist, we found that both my wife and I had been exposed to Hepatitis B. My children were vaccinated. He advised me to double glove during surgical procedures, go on with our normal lives, and return in six months for reevaluation.

After six months, my wife had converted to the carrier state, but I had not and was classified as having chronic Hepatitis B. The advice was the same and this was confirmed by experts in Boston, New York and the National Institutes of Health (NIH). We were not aware of the possible long-term effects of being a carrier or having chronic Hepatitis B. The information was not available at the time, nor were there any directives from the U.S. Centers for Disease Control and Prevention concerning invasive surgery. We returned once more to our gastroenterologist. In six months, the situation was unchanged and thereafter we saw our local internist.

It is now known that about 10 percent of adults and most children under the age of five (20 to 90 percent) do not clear the virus. If this occurs, a carrier state develops. Presently there are 1.5 million asymptomatic carriers in the United States who may or may not have liver damage. About 1 percent go on to develop chronic hepatitis with varying degrees of cirrhosis which may lead to liver failure. Less than 1 percent of the chronic carriers develop hepatocellular carcinoma necessitating extensive care and follow-up.

Chronic fatigue

The only problem I had between 1984 and late 1989 was the development of chronic progressive fatigue. Liver function studies remained normal and we did not make the connection between chronic Hepatitis B and the fatigue. We attributed it to working long hours in a solo practice.

In 1989, the fatigue had become so severe that I had to sleep during lunch breaks. One day while finishing a surgical procedure my hands began to shake uncontrollably. I finished suturing the skin but knew that I had to find out what was wrong with me before I attempted any further surgery. The next morning I went to the lab and the results revealed that my liver enzymes were 30 times normal with an elevated bilirubin. I immediately contacted my gastroenterologist and after evaluation that day, he said, "The fact that you are not dead is encouraging." He restricted my activities and my practice (no surgery, no new patients, just completing treatment of fractures). Shortly thereafter he referred me to the NIH and the University of Pittsburgh for their evaluations.

The news was not good. The physicians at the NIH advised me that I had, at most, five years to live but were willing to try me on a then-experimental drug, Interferon Alpha 2-B. They gave the drug only a 20 percent chance of having any effect. At the University of Pittsburgh, Thomas Starzl, MD, advised that I undergo a liver transplant as soon as they could find a donor. I was fearful of a liver transplant and refused to believe the poor prognosis.

Reluctantly, I consented to be placed on the secondary transplant waiting list for a liver transplant, but returned to the NIH and started Interferon which was continued for 11 months. During this period my physical stamina deteriorated; my jaundice became worse (my wife describes me as taking on the hue of an aging piece of copper-bronze and light green). My enzymes decreased as did the amount of viral reproduction. After 11 months the Interferon was discontinued and my condition gradually worsened. I did not convert to the carrier state while on the Interferon, but it did buy me a year. I returned to the University of Pittsburgh and was told that my only chance of survival beyond six months was a liver transplant. I was hesitant about a transplant because of the poor statistical results with Hepatitis B transplant recipients. By this time, all the other transplant centers had refused to consider me.

Waiting list

I was placed on the primary national waiting list in May of 1991. The first call came in about a week, but the liver was unacceptable when the surgeons inspected it. The second call came in November of 1991. By this time I had accepted death, feeling a donor liver would not be obtained and that I would not survive the surgery. After the emergency flight to Pittsburgh I was prepped for surgery as before, except this time the liver arrived from Washington, D.C. and was acceptable. The surgery began at 8 a.m. and lasted 16 hours. I was transfused with 40 units of blood and 14 platelet packs. My postoperative course was relatively uneventful except for an episode of acute psychosis attributed to the drug, Acyclovir.

I have survived 31/2 years now with periodic bouts of Hepatitis B which is presently being treated with a new experimental antiviral drug that appears to be effective. There have been bouts of depression during this time with which I am coping. At present I am off all my immunosuppressants except for FK-506 (Prograf) which was approved last year for liver transplants by the U.S. Food and Drug Administration. Although I am not able to return to my medical practice, I enjoy being an advocate for organ/tissue donation and spending time in my workshop making furniture for my childrens' homes and toys for my grandchildren.

Why have I related all of this to you? To encourage you to learn more about and to assist in the procurement of organ and tissue donation and transplantation. Certainly not a new field of medicine-the first skin graft was performed in 300 B. C. Because of new immunosuppressant drugs, better techniques and new technological advances (all leading to better survival rates at one and five years) transplantation has grown rapidly in the last 15 years.

But a fundamental problem exists: there is a lack of donated organs and tissues. Presently in the United States there are more than 42,000 people waiting for organ transplants (20 percent of whom are under age 18). (A new name is added to the list every 18 minutes.) There are an estimated 20,000 deaths per year in the United States that could provide donated organs and tissues to save lives that would otherwise be lost. Last year there were about 4,500 organ donors.

These numbers have not changed significantly over the last five years. From these donors, approximately 18,500 organ transplants were performed. It is estimated that if one person would donate all of his/her organs and tissues, at least 50 individuals would benefit. Because of a lack of organs, seven to 10 people die each day (about 3,500 per year) in the United States.

It is estimated that by the year 2010, 5 percent of the United States population will be an organ or tissue recipient. Every physician, from family practitioner to pathologist, is going to have to work with and treat transplant recipients. We are not oddities anymore, but people who have been given a second chance at life. Learn about the diagnosis of brain death, cardiac death, and what organs and tissues can be obtained for organ transplantation. Be supportive of patients and families who are considering organ and tissue donation.

If you think you have identified a potential organ donor, contact your local organ procurement organization. Let them decide if the candidate is acceptable and aid the family in their decision. A fully trained organ procurement specialist will take care of the details.

Six years ago I knew nothing about organ donation and transplantation, but today I am a living transplant recipient. Some day possibly you, a loved one, your child or grandchild will require an organ transplant. Take the time to learn about the basics concerning organ and tissue donation so that if the need ever arises you will understand the process.

You can make a difference. Every physician's office should have literature and donor cards available for their patients. The literature is free for the asking. Contact United Network for Organ Sharing (UNOS), 1100 Boulders Parkway, Suite 500, P.O. Box 13770, Richmond, Va. 22225; (800) 24-DONOR.

Reprinted with permission from UNOS Update, Volume 11, Issue 3, March 1995.


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