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."
"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.
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
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
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."