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Heart transplants give hope to patients, families

By RAVINDRA NATHAN

© St. Petersburg Times, published February 2, 2001


When Stanley Dygert walked into my office, he looked almost the symbol of health: tall, chubby-faced with a baritone voice; full, graying hair near the temples. Having retired to Florida at the age of 55, he wanted to get established with a cardiologist first, and then pursue his favorite sport of golf.

Stan had his first heart attack at the age of 42 while working as an insurance executive in Buffalo, N.Y. Fortunately, heart catheterization showed only a minor blockage in one of the coronary arteries and mild damage to the heart muscle. He was relieved when told he wouldn't need any bypass surgery. He changed his lifestyle, cut out the sausage and eggs for breakfast, gave up cigarettes and shed some flab. He thinned down from 220 pounds to 180, and looked fitter than ever.

Stan enjoyed two glasses of wine before supper. It was the doctor's orders to raise the "good" cholesterol and prevent further blockage in the coronary arteries.

During the next few years, Stan regained most of the weight he had lost by careful dieting. I wasn't surprised, since this is a usual game played out by a lot of obese people. Then one day he landed in the emergency room with shortness of breath. He was told he had developed heart failure and his heart muscle had some damage. It was better that he quit working and retire to Florida. That was when he got established with me in Brooksville.

Over the next five years, Stan did quite well, his heart failure seemingly under control. We became good friends as well. It was more than the usual doctor-patient relationship; he talked to me about his new golf buddies at the Brooksville Country Club and volunteer work he was doing at his church, while I would talk about Hindu philosophy, like meditation, vegetarianism, etc., to improve the healing process. We had other common ground as well, like my son entering the Boston University School of Medicine and his nephew graduating from the University of Virginia Medical School.

I didn't see Stan for a while and he may have missed an appointment or two. I presumed he was doing quite well; otherwise he would have called me. Then suddenly one day he showed up, barely able to breathe, and I had to rush him to the intensive care unit. With intravenous diuretics and deft handling in the intensive care unit, he regained his breath and felt better. But I knew something really was awry this time.

A grim long-term prognosis

A few tests, including a cardiac ultrasound and heart catheterization, made the diagnosis clear. Stan had developed a condition called dilated cardiomyopathy, which results in an enlarged and flabby heart with poor pumping function. This caused backup of fluids in the lungs, which made breathing quite difficult. Although one could tone up a failing heart with drugs, the long-term prognosis was grim, and sooner or later he would succumb to his disease.

During the next few weeks, it became painfully obvious that my dear friend was slowly deteriorating. He found it difficult to execute even simple functions without stopping to catch his breath.

I decided to have a conference with Stan's entire family. His nephew, a doctor, knew the seriousness of the situation.

"Stan's heart is not getting any stronger, in spite of all the good drugs. He is retaining more fluid," I summarized the problem. "He is likely to be back in the hospital soon," I reluctantly added. I didn't quite have the heart to tell them this diagnosis was tantamount to a death sentence. It was just a matter of time.

What was the alternative? I had to somehow make them accept the idea of replacing his heart. I knew in my heart it would be a formidable surgery, especially for a very sick man like Stan. Moreover, he would be on lifelong treatment with drugs to prevent rejection of the new organ. I discussed briefly the high success rate in cardiac transplantation and the many advances medical science has made to prevent rejection of a transplanted organ. Heart transplants have become almost routine with odds for five-year survival being great.

"Of course, everything depends on the availability of a donor heart. Unfortunately, many more patients are waiting than the cadaveric donors available for transplantation," I said, trying to put everything in perspective. Finally they gave me the go-ahead.

The first step was to contact transplant coordinator Jane Ferguson at Tampa General Hospital. She was very happy to arrange for the preliminary transplant work-up, which included a plethora of tests including cardiac biopsy, HLA matching and psychiatric evaluation, just to name a few. For Stan, it was an exhausting five-day stay in the hospital. There was unanimous agreement he would need a new heart soon. By this time he was perennially short of breath and often forgetful, an effect of a lack of oxygen in the brain. The transplant team was concerned about his wine indulgence, although Stan had been "dry" for at least a year now. They obviously didn't want the new organ to fall apart because of his occasional alcohol indulgence.

"We will submit Stan's case to the transplant committee for discussion and approval." I fervently vouched for his mental stability, supportive family, compliance with medical treatment, etc., in an effort to convince them he was certainly worthy of a transplant. On the day when his case was discussed by the transplant panel, both of us were nervous. And our joy knew no bounds when Janet, Stan's wife, called me with the good news that Stan had been accepted for transplant surgery. "Well, the first hurdle is over," I told myself. There will be many more before a successful transplant is accomplished, I told myself.

A race against time

Now the waiting game began. First, Stan's name was added to the list in the computer organ matching program, a national network called UNOS. That meant Stan would be eligible to receive a donor heart from anywhere in the country. Stan knew the donor organ would have to be matched with his blood group, HLA antigens, body size and so on. He knew the usual waiting period to get a donor heart would be eight months to infinity. Frankly, I was not sure whether he could make it longer than a few weeks. In fact, the first patient I referred for transplantation a few years ago died at the age of 57 while waiting for a donor heart. Since then, I have been painfully aware that too many people die with their hopes never realized. I quickly stamped out such negative thoughts from my mind.

Thanks to the new and aggressive management of congestive heart failure, the most common cause for heart transplantation, patients are living longer; hence, demand for donor hearts is far outpacing the supply. Every year, 50,000 or more will need a new heart, but 95 percent of them will die without getting a transplant. Of the 8,000 or so who are lucky enough to manage to get on the national transplant registry, only a third actually get the new hearts. Even for those who get them, they don't get them at the optimal time and have to go through many hospitalizations. And transplants are very costly, too: The surgery itself costs more than $100,000.

After his short stay at Tampa General, Stan came back to Brooksville with renewed energy and hope for the future. He also showed me his new beeper, which made it easy for the transplant team to page him at any time, when a donor heart became available. "I am ready," he said. As for me, I ceased to be his doctor. Instead, I became part of his family, anxiously waiting.

But it was not going to be that easy. One day, I got a call from the emergency room. It was Stan again, his third admission in less than three months. He was in pulmonary edema, and this time it was a very close call. We pumped out all the fluid from his lungs with megadoses of diuretics and other potent drugs. He was on the verge of being put on an artificial ventilator, but he rallied just in time. His heart had to be supported by special medications and when he was discharged, I arranged a home health care team to give him daily intravenous medicines to tone up his weak heart. He even had a permanent catheter called an "infusaport" fitted into the sublavian vein for ready access.

Stan's life was hanging by a thread.

"How long can I continue like this?" he asked me after his last admission. The fear of early death was clearly reflected in his eyes. I knew he was walking on eggshells.

"I don't know, Stan. We are doing everything we can to keep you going. Who knows, Tampa General may call you with a heart tomorrow." I wanted to keep his hopes high. But I knew that at any minute the heart could stop and he would move into eternity like so many others. Would history be repeated?

Later, Janet asked me privately, "Stan is not going to make it, is he?"

"Don't even think about it," I said. In fact, I didn't know what else to say. "It all depends on if he can get a heart soon enough," I added. I didn't want to give her any false hope.

No call came from Tampa General and Stan was dejected, almost despondent. I, too, was losing hope, realizing Stan wouldn't be with us too long if he didn't get a heart soon. During each hospitalization, I personally called the transplant team and apprised them of the urgency of the situation. I was almost in panic myself. At one point, his pressure was so low, I thought he wouldn't survive that night. The end was in sight and it was frightening. I had never felt this close to a patient. I simply didn't think I could carry him anymore on my shoulders.

At last, the wait ends

On July 2, 1994, I got a call from Phyllis, Stan's doting sister. "Hey, they have a heart for Stan. We are on our way to Tampa General Hospital," she said from her car phone. I was thrilled; finally, a gift for the dying man. It couldn't have come a moment too soon.

"Is he afraid to go through the surgery?" I asked Phyllis, although I knew the answer. "Are you kidding? He knows this is his last chance," Phyllis was almost exuberant. "Stan was praying for this moment."

Stan went into surgery about 4:45 a.m. Somewhere in Fort Myers, there had been a car crash and an 18-year-old boy died. He was a perfect match for Stan. One of the cardiac surgeons took off quickly in a helicopter and did the harvesting surgery. He removed the donor heart and put it in an ice-filled cooler and rushed back to Tampa General Hospital. By that time, Stan was already under anesthesia and his chest was being opened by another surgeon. Excellent timing and coordination. The surgery went without a hitch.

I let out a sigh of relief and happiness.

Immediately after surgery, heavy doses of cyclosporine and prednisone were started to prevent rejection, a much-dreaded complication following transplant surgery. He came off the respirator smoothly. For the first time, Stan could really breathe easy. His courage and determination finally paid off. Janet was jubilant. She didn't think she would ever see this day.

Then came a few setbacks. Two days later, Stan couldn't see through his right eye. He felt that his left arm and leg had become a little weak. He was very perturbed.

"Now what is the matter? I have a good heart, but why can't I move my arm?" He was quite anxious.

The neurologist patiently explained he had experienced a mild stroke and not to worry for the moment. With physical therapy, he felt better. Then came his first bout of rejection. He underwent a biopsy of the new heart and had to have some powerful anti-rejection medications, which controlled the problem. A skin rash from a drug allergy was a minor problem compared to the depression he soon sank into.

Finally, after a 20-day hospital stay, Stan came home a victor. I put him through our cardiac rehabilitation program at Brooksville Regional Hospital, where he was considered a hero of some sort and certainly was the center of attention. Six months later, he was hanging out on the golf course, flaunting his new heart.

Now that Stan has celebrated several anniversaries of his transplant, he is wearing his "gift of life" with great pride and gratitude. He has a lot more hair on his head, and it is darker and healthier.

"Hey, I can go to bed every night without the fear of waking up short of breath in the wee hours of morning," he said with a sense of relief. He can't believe this transformation. Life has been reinvented for him. His only complaint now is "If I have an 18-year-old heart, why can't I "perform' like an 18-year-old?"

A surge of satisfaction warms my whole body and mind just watching the victory of science over death.

On June 1, 2000, my wife and I were invited to the 15th anniversary celebrations of cardiac transplantations in Tampa General Hospital at the Museum of Science and Industry in Tampa. Many physicians and a lot of patients and families attended the program. It was indeed a special party and a remarkable sight. Several active and vibrant people of all ages from children to old men with radiant faces, dancing away effortlessly. What was so special about it? They all had one thing in common. They all have a new heart to lean on.

This was a celebration for the courage of all patients who went through the nerve-racking experience of cardiac transplantation and the illness that led to that. It also was a recognition of all the donors who, by their deaths, made this gift of life possible, and their families who had to make an emotional decision while their loved ones were dying.

The transplant coordinator, in her welcome address, said that Tampa General has now successfully done 435 cardiac transplants, including five combined kidney and cardiac transplants. Their 10-year survival rate is now exceptionally good.

I had a chance to talk to Mark Weston, M.D., the director of the program, who said it is highly successful and many benefit from it. The perennial shortage of organs is the only limiting factor.

There is hope at last for many who are dying of heart disease.

-- Dr. M.P. Ravindra Nathan is a Brooksville cardiologist. Guest columnists write their own opinions on subjects they choose, which do not necessarily reflect the opinions of this newspaper.

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