February 11, 2008

When the end stage
is just the beginning

As Valentine’s Day approaches, the story of a young mother with cardiomyopathy and the Yale medical team that struggled to save her life cuts to the heart of the matter.

After surviving two heart transplants, Kim Lane is enjoying life as a “typical wife and mother” with her husband, Steve, and her two daughters, Emily (left) and Ashley (right).

“I had been in Yale-New Haven Hospital for almost six months, just waiting,” Kim Lane recalls. “One day, I was on my laptop and my doctors came in and said, ‘We’ve got a heart,’ and I was like, ‘You’re joking!’ I couldn’t believe it. So, that afternoon they started prepping me and doing blood work, and within 24 hours, I had a new heart.”

That was Feb. 11, 2005. Three weeks later Lane returned to her home in Danbury, and she’s been doing well ever since. But what makes Lane’s story remarkable isn’t that modern medicine saved her life, that her new heart arrived just in time for Valentine’s Day, or that she was only 37 years old and had two young daughters. It’s not even that she spent nearly half a year in the cardiac intensive care unit, hooked up to a heart monitor, that she had to have double hip replacement surgery after the heart transplant because of the bone damage caused by the steroids she took, or that her husband Steve’s co-workers in the Bethel highway department donated their sick and vacation time to him so he could visit his wife in the hospital. What makes Lane’s experience extraordinary is that this was her second heart transplant.

“It’s rare, rare, rare,” Heart Transplant Coordinator Joan Amatruda, RN, says of retransplantations. “To survive is even more rare.”

Between Jan. 1, 2004, and June 30, 2006, only 3 percent of all heart transplant surgeries were retransplantations, according to the International Society of Heart and Lung Transplantation Registry. The Yale Heart Failure and Transplant Program, which was established in 1984, has done only two.

According to Stuart Katz, MD, director of the Yale Congestive Heart Failure Program, candidates for retransplantation tend to be younger than first-transplant patients, on average between 40 to 50 years old. They don’t have any unrelated medical conditions that could compromise their chances of survival, and the failure of the first transplant is thought to be identifiable and treatable with another heart. In Lane’s case, Katz says, doctors believed her first donor was not a close enough match, which led to aggressive rejection of the donor heart. 

Lane, a healthy and active child who played sports all through school, developed cardiomyopathy following pregnancy. She first became aware of a potential problem in 1999, when, during a routine check-up, her doctor told her she needed a pacemaker. ”Everything was good in the beginning,” says Lane, who was 30 at the time, “but when I was about five months pregnant (with her second child), my health started to go downhill quickly.”

After complaining of shortness of breath and general discomfort, Lane was diagnosed with end-stage cardiac failure. She was rushed to YNHH, where she was given steroids for two weeks to strengthen her unborn daughter’s lungs, so the baby could be induced six weeks ahead of her due date. “About a week later, they put me in a coma and hooked me up to a ventilator to keep me alive while we waited for a heart,” Lane says. After about a month, she was brought out of the coma and a mechanical heart (LVAD) was installed. Within 24 hours, a heart was found, and John Elefteriades, MD, director of cardiac surgery, performed the transplant surgery. 

“I was doing pretty good,” Lane says of her post-transplant condition, but then in September 2004, just shy of the fourth anniversary of her transplant, she started to feel ill. “I was getting sick, bloated. I couldn’t eat. It was hard to get air,” she says. “I was hoping I wasn’t going through the whole rejection thing, but I could tell I was getting sick. I didn’t know what to do.”

When Lane went to her primary doctor, Robert Wenick, MD, of Bethel, he told her she needed to go to the hospital immediately. As Lane had feared, the diagnosis was transplant vasculopathy and end-stage cardiomyopathy. Her body was aggressively rejecting the donor heart. “They gave me lots of steroids, but it was too far along to stop it,” Lane says. “I was kind of in shock. I couldn’t believe I was going to have to go through it all over again, that is if they even accepted me to get another heart.”

A multidisciplinary transplant team, consisting of surgeons, cardiologists, social workers, financial and transplant coordinators, met to consider Lane’s case at its weekly meeting. After much discussion and consultation of the available literature, the group decided she was a good candidate for a second heart.

Lane says the second surgery, performed by Michael Coady, MD, was easier than the first, because she knew what to expect. But she says the ordeal has been hard on her daughters. “They have it in their minds that it’s going to happen again,” she says. “When the little one knows I have to go to the doctor, we go through this whole drama thing: ‘I don’t want you to go!’ I just tell her I’m going in for a tune-up, like we do with our cars.”

These days Lane enjoys living the life of a “typical wife and mother,” cooking meals and driving her girls to Brownies, dance practice, religion class and other after-school activities. “You just have to have a positive attitude,” she says. “That’s what gets you through.”

Amatruda, who has been a heat failure and transplant coordinator for more than 15 years, has worked with Lane since her initial referral and heart transplant. “Her survival is what keeps all of us going,” she says. “To have some small role in such a wonderful success story is beyond words.”

Next week: A story about the extraordinary measures Lane’s transplant team took to maximize their patient’s chances of survival after a second heart transplant.

—Jennifer Kaylin

Photo by Kiri Lake

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