After 25 Years, One Man Proves What Heart-lung Transplant Can Do
Just a few months before Steve and Renee Rasmussen's wedding in 1977, his mother looked at Renee and said, "Steve has something he needs to tell you."
That something would dramatically shape their lives to come.
Rasmussen, still just 18, had been diagnosed at age 3 with cystic fibrosis, a disease that causes the lungs to produce an abnormal amount of mucous. That mucous becomes a breeding ground for frequent infections and each infection scars the lungs, reducing their ability to absorb oxygen. Under such an assault, lungs can fail completely. The mucous also interferes with the body's ability to digest food. And so keeping well nourished becomes another battle.
When Rasmussen told his wife-to-be about his disease, however, he had already beaten by several years the life expectancy that was then typical for people with cystic fibrosis.
Rasmussen's doctor gave the couple his most hopeful approach to their future together. "He said that it would mean the most to me—that at one point, I might have to work because Steve might not be able to," Renee Rasmussen said. She, too, was just 18. "I was madly in love with Steve. It didn't matter. We just kept living like it was going to be okay. We didn't deal with it ending in his death."
The road to heart-lung transplant becomes clear
They were together for three years, living in Santa Cruz where both had been raised, before Rasmussen's first hospitalization at Stanford for complications of his cystic fibrosis. About six months later, came another, and then another. "After four, or five, or six hospitalizations, you start realizing that you are falling further and further behind," Rasmussen said.
By the spring of 1988, the Rasmussens had become the parents of two sons, but now Rasmussen was very limited in what he could manage. He was hospitalized for long periods, able to breathe only with full-time oxygen pushed into his lungs. He was 28. Doctors began to talk about transplant—and not just lungs, but a heart, too. "It scared us," Renee Rasmussen said. "It was a whole other ballgame. We didn't know what it would bring into our lives. They told us the life expectancy after transplant was five years. At the time, that sounded wonderful because we knew that we didn't have many tomorrows."
At 26 years out, Steve Rasmussen is not the longest surviving heart-lung transplant recipient. The woman who was Stanford's heart-lung transplant patient #39 is at 27 ½ years since her transplant.
Reitz knows that Rasmussen's transplant longevity is unusual. He thinks that it might be related to some kind of difference in Rasmussen' immune system. Another possibility is the combination of a particular donor and a particular recipient. "Frankly, we don't have any real clue what it is about the long-term survivors that has given them this tremendous gift," Reitz said.
"We were also dumbfounded when my doctor talked about a heart-lung transplant," Rasmussen said. "My wife and I had never heard of that, but I had a feeling that I was pretty much at the end of the line." The more they talked with the Stanford team, the more they understood the why of a heart-lung transplant.
Stanford's history of ground-breaking transplant work dated back to the 1968, when cardiac surgeon Norman Shumway crafted a protocol and then lead a Stanford surgical team to accomplish the first successful heart transplant in the U.S. Lungs were another matter. Built of delicate tissue prone to quick deterioration once outside the body, lungs were known to be a transplant challenge for other reasons, too. Even in 1988, when new lungs were Rasmussen's only hope, doctors had yet to determine the best operative technique.
Post-operative immunosuppressants as a barrier against rejection of the transplant were also a work in progress. So were the details of post-transplant life. Doctors were not as sure as they are now about how to control post-transplant rejection and infection.
Cyclosporine, an immunosuppressant with low toxicity, was found originally by a group of Swiss scientists in 1976. It had subsequently proven itself important in the survival of heart transplant patients. When newspaper advertising executive Mary Gohlke came to Stanford for her heart-lung transplant, however, the FDA had not yet approved cyclosporine for anything other than heart transplant. And it was processing applications facility by facility. After waiting for months for the approval, Gohlke asked the executive editor of her newspaper to see what he could do. He made calls, one of them to Arizona's U.S. senator. Shortly thereafter, Reitz got a call. Not only had the FDA approved Stanford's use of cyclosporine, it had given blanket approval to all qualified medical facilities to use the drug in heart-lung transplant. Gohlke's perseverance had opened the door for many others waiting for that approval.
"The whole team was excited," Reitz said, "because this was something they had not seen in their lifetime. It's pretty dramatic when you take out the heart and the lung and you have this huge space with the ribs. You think, 'What is going on?' But taking someone back from the brink of death and giving them health—that's one of the great things about transplant and being involved in transplant."
Why a heart-lung transplant—and not just lung
But Shumway and Bruce Reitz, MD, a young cardiac surgeon Shumway mentored toward the world's first successful heart-lung transplant in 1981, knew one thing with certitude. Transplanting organs as a connected group eliminated the big problem of making the intricate connections between individual organs.
"Instead of four or five connections needed for lungs only, you only had to make three with a heart and lung combination," Reitz said. He and others also knew that the combined transplants worked better when both organs were from the same donor. In 1988, the heart-lung procedure was the most common surgical salvation for people with cystic fibrosis.
Now, with more experience in how to do a successful lung transplant, the double organ procedure Rasmussen had is rare. Yet some of the questions around lungs-only transplant remain, said David Weill, MD, director of Stanford's Center for Advanced Lung Disease and the Lung Transplant Program. "There's still a lot to be learned," he said.
Rasmussen became Stanford's 50th heart-lung transplant—and on April 1, 2013, he celebrated those 25 years since the surgery. It is an anniversary the Rasmussens look at with wonder. Those five years the doctors predicted the transplant would give Rasmussen "went by really fast," Renee Rasmussen said. "Steve was so healthy. We lived a normal life, like a normal family. We were so thankful for everything in our life." An unexpected benefit to another of heart-lung transplant
They were so engaged in that normality that when five years came and went, "we didn't say, 'Oh, it's been five years'," she said. "But when we'd stop and think about it, we'd be blown away."
Returning home 25 years ago after his heart-lung transplant, Rasmussen recalls, "was probably the most invigorating feeling. Everything was fresh and new. In the last two weeks before the transplant, I had been like the living dead. After the transplant, I could breathe big huge breaths without coughing. I was a new man, gaining strength every day."
He also had time to think about his own heart, which had been healthy. In a then-rare transplant called a domino, doctors transplanted Rasmussen's s heart into another young man whose heart was failing. Rasmussen learned of that plan about an hour before his surgery. "It was a no-brainer," he said. "Throwing it away would have been absurd, so knowing it could help someone else was a relief."
The time did not pass without further health issues for Rasmussen however. "Some of Steve's battles have been really hard," Renee Rasmussen said. "People have said, 'He's not going to make it.' But we go through that and he makes it and we jump right back to normal life."
Thinking about the transplant remains something that Rasmussen does infrequently. Typically, those thoughts come when he's brushing his teeth or getting dressed and he sees the long scar in the mirror. But every anniversary is huge, he said. "People are amazed at me, but it's not me. The doctors did their job. I do the best I can, and God takes care of me."
Whenever he hears stories of transplants, though, he is pleased. "People need to be reminded. We need people like me to share their stories: Transplant is the gift of life."
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