JERRY'S STORY

Discovering I Needed a Transplant

In 1992, I was a Major in the Army, working at that National Guard Bureau in the Pentagon. One morning I was taking my regular run of 4-6 miles. Halfway through the run I found myself face-down on the running trail. I did not know where I was. I thought I was still in bed, and had overslept for work. When I realized what had happened, I dismissed the "fainting spell" as exhaustion and perhaps dehydration. I then got up and ran approximately three miles back to the gym.

Only because of my wife's insistence did I go to the infirmary. There they discovered that I had "skips" in my heartbeat. I again dismissed everything as a bout of dehydration. Nevertheless, I agreed to undergo more tests at Walter Reed Army Hospital in Washington D.C. Soon thereafter I was diagnosed with a heart problem. Specifically, I was told I had idiopathic dilated cardiomyopathy. It was explained to me that this was a disease of the heart where the muscle itself was dying. Apparently a virus had attacked my heart at some time or another. The cause really remains unknown to this day (idiopathic). My coronary arteries were clear, which is the typical problem with most heart patients. The military doctors told me that more likely than not, my condition would worsen over time and that a heart transplant was probably in my future.

In a year's time my heart deteriorated to the point that I was disqualified from military service. Therefore, in 1993, I was medically retired from the Army. I then moved my family to Las Vegas to be closer to my parents "just in case" my wife needed help in dealing with my illness. Nevertheless, I figured that I would beat this problem--that the doctors were exaggerating. I never really thought that a transplant would be necessary, and even if it were, I would just go ahead and get one. I never realized that there was a drastic shortage of organs, and thousands on the waiting list.

I continued to run daily for several years after being retired from the military. Even though my endurance was lagging, I attributed it just as much to age as I did to a deteriorating heart. It wasn't until 1997, when I again woke up on the jogging trail, that I realized the doctors had been right all along. This time, I didn't get up and run back home. I wasn't capable. My heart had finally used up its reserves, and I was now going in and out of congestive heart failure. Besides having a weak heart, I also had a very irregular rhythm. This, in fact, was what was causing me to pass out while running. My heart would go into a very fast and irregular heartbeat; at times it was not really beating at all, but quivering at a rapid pace and failing to pump blood. Since no blood was reaching my brain, I would black out. These were, in fact, episodes of "sudden death," where you ultimately die because of the lack of blood and oxygen being pumped to the brain and major organs. The doctors hypothesize that when I blacked out during the runs, and fell hard on my chest and face, that the impact of the fall jolted my heart back into a normal rhythm. I was lucky.

Nevertheless, this was the beginning of my rapid deterioration. My quality of life dropped quickly from this point on. Doctors implanted an AICD (automatic implantable cardioverter defribrillator) into my chest, designed to shock me back into a normal rhythm whenever my heart went into its fast, irregular gyrations. They also aggressively treated me with medications designed to regulate an irregular heartbeat. These were used reluctantly, since they had many undesirable side effects. One side effect that I suffered was an extremely slow heart rate and corresponding low blood pressure. To counteract this, the doctors implanted a new device that would not only shock my heart, but would also pace it at a higher rate. These were all stopgap measures designed to keep me alive long enough to receive a heart transplant. After an exhaustive evaluation, I was placed on the heart transplant list at UCLA Medical Center in late 1997.

I was on the list for almost two years before I recieved a new heart in August 2000 at age 46. In the year prior to my transplant I was couch-bound, getting up only to go to the bathroom. My defribrillator shocked me frequently. Sometimes it kept me from passing out, other times it did not. I would have died if it had not been for this device, and for this I am grateful. That being said, I hated having that thing implanted in me. The shocks were quite uncomfortable, but more so, they were unsettling. I knew that every time that I got shocked I was in real trouble. It served to remind me how sick I really was. Plus, I knew that there would come a time where the shocks would no longer save me. Thankfully, because of my transplant, these times are now behind me.

What It Meant When I Found Out I Had A Donor

The whole issue of transplantation is a very emotional one for the prospective recipient and the prospective donor and their respective families.

As a recipient, the most difficult issue that I had come to terms with was that in order for me to live, somebody must die. I also realized that, in most likelihood, my donor would probably be a young person, at least younger than me. This thought haunted me, and was brought into an eerie focus on the very night that I was called by UCLA, telling me that they had a donor heart.

My wife and I received the call from UCLA at approximately 1:30 AM. We were both semi-awake, because our then 19 year old son had not yet gotten home. This was not unusual, since he was not under a curfew. Like all parents, however, we worried until he was back under our roof and safe for the night. When the call came from UCLA in the early morning, my wife was startled and picked up the phone. Even though we had been waiting for "donor" call for almost two years, we did not expect one any time soon. When my wife answered the phone, someone in an authoritative voice asked for Mr. Prose. Our first thought was that something horrible had happened to our son, and we were both scared to death. You can imagine our relief and elation when we discovered that the call was instead from UCLA, summoning us for my long-awaited transplant. After we hung up the phone, my wife quickly gathered our bags for our life-flight to UCLA.

Suddenly, my joy turned to overwhelming sadness. It dawned on me that the call my wife and I initially feared, i.e. that our son had been hurt, had probably happened to another family. Somewhere, my donor family was suffering through the most ultimate nightmare possible. My thoughts were of nothing else for the entire trip to LA. I wasn't thinking about my surgery or my chances of survival or the hope of a new life before me. All I could think of was that someone out there had prematurely died, allowing me the chance to live. The extremely sad irony of this story is that upon arriving at UCLA, I found out that my donor was an 18-19 year old male--the same age as my son. This thought saddens me to this day, even though I realize that I had nothing to do with this young man's death.

I have been asked what this "gift of life" has done for me. What have I experienced because of my transplant that I probably would have missed out on? For starters, there are two very tangible things. First of all, it allowed me to be there for the birth of my first grandchild who was born less than a month after my transplant. I was able to visit my daughter while she was in labor in the hospital, a feat that would have been impossible only a month before. I have now been able to enjoy my grandson, not as a sickly, dying man, but as a vibrant "young" grandfather. The second thing that my transplant allowed me to do was help care for my ailing mother. Both my parents were gravely ill preceding my surgery. My father died of liver failure several months before my transplant. He never got a chance to see the "new" me. Shortly after my transplant, my mother's lung cancer worsened. With my new heart, I was able to spend time with her and to attend to her as she fought her terminal disease. We spent a lot of quality time together, and I was there for her until the very end when she passed away several days after Christmas 2001. I will cherish this added time I got to spend with her for the rest of my life.

My transplant has also done other things for me that are not necessarily tangible or quantifiable. A friend of mine got a heart transplant about four months before me. He was a very sick individual, and had been on the list for about three years. Consequently, while waiting, he was in deep despair, and about ready to give up. Towards the end of his long wait, he got some words of wisdom from an acquaintance who himself had received a liver transplant. This person told my friend that those awaiting organ transplants have a unique perspective on life. He pointed out that everybody knows that they are going to die someday, but really have no idea when. Those awaiting an organ transplant, however, have a more finite idea of when they could be gone. Therefore they should look at any extra time they might get as a bonus. "Plan for the worse, pray for the best, and take what you get." As he told my friend, if you are fortunate enough to get your transplant and a second chance at life, make the most of it.

I know my transplant gave me back my life, a quality life, something I had not had for a long time. It has given me the opportunity to do things, for my family in particular. I did not suffer through my heart problems alone. In many ways, it was more difficult for my family, particularly my wife, than it was for me. I want to now take care of her for a change.

What Can We Do ?

My transplant has also given me a new, more positive perspective about people. As I wrote in a soul-searching letter to my donor family, "I want to do my best to be worthy of this gift that you and your loved one have given to me." It sounds a little corny, but it is true. I feel a need to give something back to the organ donation community. I am doing so by working on a volunteer basis with Nevada Donor Network, the state's organ procurement organization. I am also becoming more active with the Champions of Organ Sharing, a Las Vegas based support group for organ recipients, organ donor families, and those awaiting organ transplants. Both of these organizations work tirelessly to promote organ donor awareness in our local community and beyond.

Over 80,000 people are on the national organ transplant waiting list, and many will die without receiving their gift. The list grows larger every day. The magnitude of the shortage of available viable organs was once put in perspective for me in the following way: "If you took the football stadium at the University of Notre Dame and filled it to capacity with those awaiting organ transplants in the United States, every single seat would be occupied!" It boggles the mind.

People, especially young people, often say that they want to make a difference in the world. Many times we look at grandiose ways to do just that, like curing a disease, or overcoming world hunger, or saving an endangered species, etc. These are ideals, however, that are beyond the normal individual. In contrast, organ donation is a way that anyone, regardless of age, background, education, etc., can make an enormous difference. What is more noble than saving a life? Today, we look at our firemen, policemen, military, and countless individuals as heroes because they are in the business of saving and preserving lives. In death, what do organ donors do? They save lives! A single donor could provide up to eight major organs to eight different individuals who will die without this type of intervention. This does not count the dozens of people who can also be helped by tissue donations such as skin, bones, tendons, heart valves, etc. Again, all these lives saved or extended by a single, heroic, donor! YES, ORGAN DONORS AND THEIR FAMILIES ARE HEROES! We need to spread this message loud and clear.

I was one of the very fortunate ones. I got my transplant. My life is back to normal. I even attended the 2002 Transplant Games in Orlando, Florida along with nine other transplant athletes from Nevada. I competed in the 1500m run and the 20k cycling race, and my new heart withstood the aerobic challenge well. I thank God, my skilled doctors and surgeons, and most importantly, my donor and his family for their generous "gift of life."

Jerry Prose
Heart Transplant Recipient
Organ Donor