A borrowed heart is wearing down
Written by Macklin Reid | Fairfield Sun, Connecticut 

A heart. The small symbol on Kayla Trolle’s driver’s license announces a commitment — she’s chosen to be an organ and tissue donor. “They could use my regular organs,” she said. “My eyes.”

Not the heart, though. They would not, in all likelihood, use Kayla’s heart. It wasn’t hers, originally. Her heart once belonged to a young Marine whose car accident ended his life — and saved hers.

Kayla knows as few other donors could what promise is conveyed by the little heart symbol on her license — the years it can mean of family love, evenings shared with friends, of beautiful Connecticut autumns and the feeling, like life itself awakening, of green New England springs.

And now, Kayla and her family — Stephanie and Michael Trolle of North Street, and her brother, Thomas — are hoping that life’s twists and turns bring one more gift.

Kayla needs another heart.

The heart she was given 11 years ago by bereft parents turning their son’s tragedy into her miracle, their family’s anguish into her family’s gratitude, has worn down. It is struggling, and will not last.

Kayla, 25, has advanced transplant coronary artery disease, a problem common in heart transplant patients.
Symptoms flared in the fall, the start of another year at WestConn, where Kayla’s a junior, her studies having been interrupted by repeated medical leaves.

“I’ve been very fatigued the last few months,” Kayla said.

“On Oct. 20, I was barely able to get from my bed to the living room. I was having trouble breathing. My heart rate was all over the place.”

“I told her ‘I think your heart’s all right,’ ” said her mother. “She said ‘No, something’s wrong.’ ”
They went to the doctor, then to Danbury Hospital.

“They started doing all these tests — EKGs, electro-cardiograms, blood work,” Kayla said. “And then they come in very somberly a few hours later, and I have a sinking feeling in the pit of my stomach just from the look on the guy’s face.”

Normally, her heart’s ejection fraction, a measure of its efficiency and health, should be about 75%. Two months before, it was 65%. Oct. 20, it was 25%. “Ejection fraction at 25% means your heart is failing,” she said.

“That day was awful. It would have been my little sister’s 23rd birthday, and she died of heart failure.”
Kayla had two sisters.

“My older sister, Jocelyn, died from heart failure, and my little sister, Alyssa, died waiting for a heart transplant in the late ‘80s. Both had the exact same rare form of cardiomyopathy that I have,” she said. “ I often times go by

‘Kayla Jolyssa’ as a tribute to them.”
Doctors at Danbury Hospital wanted to send her to New York Presbyterian, the hospital that put in her heart 11 years before, and had overseen her care ever since.

“I wanted to stay one more night at Danbury and spend time with my brother and see my friends,” she said.

Another stroke

That evening, trouble hit.

“I was surrounded by family and friends, and finally feeling good, and then I felt a tingling going up and down my left side,” she said. “I knew a second stroke was going to be inevitable. My first one, at age 13, I had a massive heart failure, liver failure, lung failure, pancreas failure, whatever-else-can-fail failure. I had a full right-sided stroke; I was completely paralyzed.”

Kayla’s heart failed at 6 weeks old, and three times since. “I’m not sure how I’m still ticking,” she said.
In the hospital stays, she made friends with other heart patients. “I’ve lost seven friends with heart transplants, who have passed away for various reasons,” she said.

There are better stories, too.

“One of my best friends —    Janelle, from Newtown — has a heart transplant, and she’s one of the longest lasting pediatric heart transplants in the world, having had it twenty-two-and-a-half years,” Kayla said.
Her life is full. “I’ve had every kind of mood and emotion fathomable,” she said. “I think of myself as seeing the world through a completely different set of eyes than your average person.”
When the stroke started on Oct. 20, there were about 15 friends and family with her.

“I was trying to be calm for everyone else; I didn’t want them to panic,” she said. “But my parents quickly panicked. My Mom ran out of the room screaming for nurses and doctors. And my Dad thought it might be the end of my life, and he kind of embraced me and he told me how much he loved me. I was listening to my father tell me how much he loved me and that I was the best daughter anyone could have asked for. I remember feeling almost a sense of calm — scared, but almost a sense of calm — and one side of me was completely limp.”

Kayla was put in intensive care and given medication to stop the stroke, despite the risk it might bring on brain bleeding.

“I took that risk because I didn’t want to be paralyzed again,” she said.
She was transferred to New York Presbyterian. There, doctors worked to find the right balance of medicines.  She now takes 22 pills a day. And they implanted in her chest a small defibrillator to give her heart a jolt, if need be.

“The defibrillator was put in Nov. 1,” Kayla said. “I’d hoped to have gone home earlier than that because I desperately wanted to be home for Halloween. Instead, I just hung out with my laptop, watching out the window to see if I could catch a glimpse of any trick-or-treaters. And I was watching my Facebook newsfeed as pictures from friends’ Halloween outings started to pop up. I was checking out everyone’s outfits and wishing I could be out and about with them.”

Kayla’s out and about a lot. She’s got classes at WestConn and two part-time jobs she works as she can — baby-sitting and doing jewelry shows for Lia Sophia.

The day Kayla told of her ordeal, she was getting ready to host a dinner with sorority sisters from Sigma Delta Tau, where she’s vice president for scholarship. “A sisterhood retreat, pot luck dinner,” she said. “We discuss happenings, philanthropies, different charity events we’re doing. It’s pot luck, so every girl brings her own dish.”
The dinner came about a week after she got out of the hospital with the new defibrillator in her chest.

“I was in the hospital for 12 days, came home two days, and then spent another two days in the hospital,” she said.

“And those two days at home made a world of difference, because I was surrounded by my home, family, friends and pets.”

Kayla has three cats — Le Rheu, a rescued French street kitten, Moo-Moo Kitty, with markings like a dairy cow, and Trigger, adopted from a Virginia gas station.

“My cats are the loves of my life,” she said.

She missed them in the hospital, and friends gave her a stuffed cat. “That stuffed cat was a God-send,” she said.

Demand for organs

Organs for transplant are in great demand. Medical science’s ability to keep people alive, awaiting organs, has outpaced donations, which are mostly from people who die of traumas like car accidents.

At New York Presbyterian Hospital, where Kayla’s on the waiting list, the median wait for a heart is 365 to 500 days. That’s a year, close to two years. She may not have that long. Ten years ago, the median wait was 207 days.

The Organ Procurement Transplant Network counts more than 109,000 patients across the United States waiting for various organs — hearts, lungs, kidneys, livers.

From January to August 2010, there were 19,246 transplants done nationwide, a fifth of what’s needed.
This makes organ donation decisions critical. To learn more, start with the Web sites: organdonor.gov, or unos.org.

When Kayla had her first transplant in 1999, she was 14. A ruling that January dictated that when a teenager’s heart became available, it would be offered to another teenager first, before adults. Kayla was third on the pediatric list, and got a heart in only 40 days. Before the ruling, teens were dying as older adults got donor hearts.

Now, at 25, Kayla’s age no longer moves her up in line. She’s near the end of the list.
A donor heart is viable for only about four hours outside the body, so the system works by regions — distance is time, and time is precious.

Kayla is listed with New York Presbyterian Hospital, in a region where 322 adults were waiting for heart donations in late November.

The numbers change almost daily: Some people get transplants, others die waiting.

Kayla’s family is looking into listing her at hospitals in regions with shorter lists — in Hartford and Pennsylvania.

As hearts become available, the sickest people waiting get first consideration. Leading a fairly normal life at home, though monitored for symptoms, Kayla is rated a ‘2.’ Ahead of her are ‘1B’ patients, living in hospitals with some intravenous lines and maybe some devices; and ‘1A’ people, who are in intensive care with little time left.

Blood type, body size and how many antibodies are circulating in the body are also factors. Kayla’s blood is type O positive: She’s in the largest group waiting for hearts.

Body size may help. Most heart patients are large males, and Kayla is a small female. If a small Type O positive heart becomes available, it could be too small for others waiting and go to her.

Despite, perhaps because of, her situation, Kayla lives with energy and relish.

“She’s like a social genius, Kayla. She’s out there enjoying her life,” her mother said. “She’s got 1,400 friends on Facebook. She’s always updating her status and letting everybody know how she’s doing, and then she gets responses. She got over a thousand responses when she was in the hospital.

“She’s selling jewelry, she’s a jewelry consultant. She’s heavily involved in helping run her sorority. She’s doing her life. She’s just going after it with gusto. People whirl around her because they like that energy.”

Not always easy

“I get a lot of anxiety from my circumstances. I’m still working on ways of dealing with that productively,” Kayla said. “I try to go with the philosophy of taking one day at a time and putting my best foot forward, because you never know what tomorrow will bring. This life is not a guarantee; it’s a privilege.

“I have a good amount of friends, family, community and sorority sisters that are — that basically serve as — my backbone for this situation. They are amazing.

“I am beyond grateful for the hundreds and hundreds of Facebook comments and e-mails, phone calls and messages, and the people that visited while I was in the hospital,” she said. “People that reach out to others are the best kind of people to have in your life. I am very lucky, and blessed.”