How does it feel to be so seriously ill that you can be saved only by an organ transplant? Surprisingly, life need not be constant pain, nor the prospect of death a constant companion. For sure, the wait for an organ, the surgery, and the recovery are tense times for patient and family alike. In the United States, more than 2,000 people are added to the national organ waiting list each month. Among them are children and teens who hope for a long and normal life. Current Health spoke to a young man who was in this situation.
JERRY COUND was 12 years old and on the verge of starting competitive athletics. There was no question in his mind that he would go out for football, basketball, and track. His dad was a record-holding high school and collegiate athlete, and his older brother and sister were similarly involved. Jerry loved sports.
Jerry didn’t know it then, but his life was about to take a dramatic turn. Now, 13 years and two heart transplants later, he talks about what has happened since.
Before his seventh-grade year and junior high tryouts, his parents scheduled a checkup for him. When he was just a 2-week-old baby, a viral illness had left scar tissue on Jerry’s heart. He nevertheless had gone through childhood without problems, and was confident that the doctor would give him a clean bill of health.
“We had about three or four days of tests in the hospital, and at the end, the doctors said, ‘Your heart is working at about 25 percent of what it should be. When you get into situations where you’re working out or you’re playing really hard, your heart compensates. It gets larger and it works much harder for you.’ They said that just as a precautionary measure, they wanted to keep me out of junior high athletics. My reaction was, ‘You’re crazy. There’s nothing wrong with me at all!’ That day I had basketball practice at the YMCA, and I came out and played just that much harder to prove them wrong…
“About a month before the end of ninth grade, when I was 15, I got sick with pneumonia and went into the hospital. I was in for a week, out for a day, and went back in the very next day with pneumonia in both lungs, gastroenteritis, and hepatitis. Tests for lupus and Legionnaires’ disease were positive. What they didn’t realize was that the heart was causing all these other problems.
“By the end of the third week, I was starting to get really, really sick and miserable. The doctors said that at that point they’d have to send me to Houston to see about having a (heart) transplant. I was a scared kid. I didn’t know anything about the transplant process.
“In Houston, I was immediately hooked up to all kinds of IVs [intravenous tubes for giving a patient medication and nourishment]. By the end of the first week, I was so sick that I literally could not do anything for myself. I could not use the bathroom by myself; I couldn’t eat. I had lost about 20 pounds and was in very critical condition.
“They put me on a transplant list and basically said that with the transplant I’d have an 80 percent chance of living a normal life. Without one, I wouldn’t have a chance to live. So we said, ‘Let’s go for it. Let’s try it.’
“At the end of that first week, I was told I had about 12 hours before my body would quit. Within those 12 hours or so, the hospital had four offers of a heart. The first three didn’t match and then the final offer came in. It was from a young man outside of Denver who had died in a car accident…
“After surgery, I was out of the hospital in two weeks. Through rehabilitation, I learned to walk again. I was able to come home at the end of summer, and since I was a pretty good student, I didn’t have to make up any of the homework I missed when I got sick…
“I think it’s important for kids to know what a person who’s had a transplant goes through. Here I was, 15 years old, a guy with average looks. Just a few months before, I’d been a really healthy-looking individual. But when you go through a transplant, you lose weight. You’re immediately put on medicines. That summer, I took 33 pills a day along with five different liquid medicines. That all causes a big psychological change in a kid’s life. You look funny. The medicine caused acne, even worse acne than a 15-year-old might normally have. Everybody else had spent the summer getting a good tan. I had spent the summer in a hospital. I had a big moon face, because medicine causes fluid retention. People weren’t looking at me and going, ‘Gosh, Jerry’s very ugly.’ It was just me feeling that way. It’s simply something a kid in that situation goes through…
“It took about six months to lose that weight in my face and build my muscles back up. I had a lot of support. I was just thankful I was alive, and things kind of got a little bit back to normal. After six months I was back playing basketball. I had a big 10-inch scar on my chest, and I had to take medicine every day, but other than that I was pretty normal…
“I finished high school and went to college. I was very active, playing a lot of sports and being involved in college intramurals. In February of 1991, during my sophomore year, my mother died. My mother was the angel of my life, and her death was really tough on me, a lot tougher in many ways than any kind of transplant. I got back to school and just didn’t do very well. My grades were OK, but I was really kind of depressed. I wasn’t feeling too good, and really just didn’t know what was going on.. .
“That summer I went to (the Transplant Games in) Budapest, and I didn’t do too well there. I got back home and immediately got sick. The doctor near my college said I just had a little bug, not to worry about it. But about a week later, I passed out and quit breathing. My roommate got the ambulance. The very next morning I flew back to Houston. ..
“The diagnosis was heart failure again. The doctor said ‘We’re not going to give you another transplant unless we find the perfect heart for you.’ On September 23, 1991, the doctor walked into my room and said, ‘We have found the Cadillac of hearts, and we’re putting it in this afternoon!’
“This transplant was different because I was older and smarter. I knew what was going on. I was more prepared. I finally got out of the hospital after a month and was feeling really healthy. I moved into an apartment in Houston, but then I got sick and went into the hospital with rejection [of the heart by Jerry's body]. I was practically dead, but they performed an emergency procedure to stabilize me. When this happened, I was in the critical care unit and was really miserable. I was crying and thinking, ‘Just let me go. Let me die.’ I didn’t want to fight anymore. But then I fell asleep. And when I woke up I started feeling better…”
Jerry’s improvement continued. These days, he has finished college and works as fitness director at the Northside YMCA in Little Rock, Arkansas. He helps people get healthy and stay that way. He often speaks to groups: church groups, civic groups, and to people facing an organ transplant.
He used to be shy, he says, but in 1995 alone, Jerry addressed a total of nearly 10,000 people. And two years earlier, Jerry had a chance to tell his story to a fellow Arkansan. The National Rehabilitation Hospital of Washington, D.C., selected Jerry as a National Victory Award winner in a program honoring transplant recipients from around the country. During the visit to Washington, Jerry went for a run with president Bill Clinton.
Speaking to transplant patients is especially meaningful to Jerry: “Whenever I hear about anybody facing what I went through, I try to give them a call and give them some support. When their doctors explain the transplant process, they talk about it from a doctor’s view, not from a patient’s view. Usually when I talk with anyone having to deal with a transplant, we talk about the issues they’re going to have to face. I tell them all the positives and the negatives, because there are a lot of tough issues…
“I’ve been a miracle child. I’ve had a lot of success, whereas I’ve had a lot of friends who have died, and I’ve had a lot of friends who haven’t had the great success that I’ve had.”
Some Facts About Organ Donation
Every year, the lives of more and more people are being saved through organ transplants. Also increasing are the number so kidney, pancreas, liver, heart, and lung donations.
Still, one new person is added to the organ waiting list every 18 minutes, and eight to nine people die every day while waiting for this gift of life. This is happening even as success rates are improving steadily for all types of organ and tissue transplants. Improvements are constantly being made in transplant surgery, matching of organs, the preservation of donated organs, and medications used to prevent rejection.
Organization such as the National Kidney Foundation point out that essential human resources are lacking. Studies have estimated that about 10,000 to 14,000 deaths that could result in organ donation occur each year. But fewer than half of these result in actual donations.
It is not unusual to be uncomfortable with the idea of donating organs, but the National Kidney Foundation makes these points:
* Donor organs and tissues are removed by surgery. After removal, the donor’s boy is closed, as in any surgery. The body is not deformed.
* Organ and tissue donations are approved by most religious leaders worldwide, who consider donations to be “the ultimate charitable act.”
* Organ and tissue donations can occur at almost any of the nearly 7,000 hospitals in the United States.