MAHOPAC, N.Y.— The poet John Keats once wrote, “Nothing ever becomes real till it is experienced.”
For Robin Zencheck, nothing could be more real than a heart transplant. She’s experienced two of them. And if that’s not enough, throw in a kidney transplant for good measure.
But Zencheck, a 35-year Mahopac resident, is a survivor. Despite her medical challenges, she says she can do just about anything anyone else can do—except eat sushi.
“But I didn’t do that before anyway,” she says with a laugh.
To celebrate her perseverance, Zencheck was named this year’s honoree for the American Heart Association’s 2017 Putnam Heart Walk, which will be held Sunday, April 23, at Brewster High School.
Zencheck’s first surgery was in 2003. It began when she noticed she was feeling tired all time.
“Just walking from my car, I would have to stop about four times to catch my breath,” she said.
But it took a while for her doctors to figure out what was wrong. At first, she was diagnosed with congestive heart failure, but her health continued to decline. She was sent to a second cardiologist and determined more tests were needed.
She had a cardiac catheterization on both sides of her heart—a procedure used to diagnose and treat cardiovascular conditions. During cardiac catheterization, a catheter is inserted into an artery or vein into the groin, neck or arm and threaded through the blood vessels to the heart.
It wasn’t long after that, Zencheck got the call: she would need a heart transplant.
“The cause was still not known, although he had a strong suspicion that I had a rare disease called amyloidosis, an overproduction of protein from the stem cells in the bone marrow that enlarge and thicken muscles,” she said. “Mine was lodging in my heart.”
For most, the idea of a heart transplant would be terrifying. Zencheck said she was oddly calm about the prospect.
“I felt sure about it; I can’t explain it,” she said. “I was so sick of [being sick] that I didn’t think about any other outcome [other than a positive one.] My family was more worried than I was.”
Another battery of tests was performed. After a biopsy of the heart, her doctor confirmed that she did indeed have amyloidosis.
“I was told that I would need a stem cell transplant to rid my body of the disease, but first I would have to have the heart transplant because my heart was not strong enough for me to survive the stem cell transplant,” she said.
In October 2003, she was admitted to Columbia Hospital to wait for a heart. On the morning of Nov. 1, she was told a donor was found.
“A 33-year-old man had given me the gift of life,” she said.
Zencheck’s optimism was rewarded. The operation was a success and she was able to return to her old life. But that would be relatively short-lived.
Ten years later, her doctor told her she was beginning to show signs of post-transplant coronary artery disease, a form of rejection. It was causing occlusion of the main arteries, feeding blood to her heart.
“As it got worse, he monitored the effects, and in November 2014 I was informed that I would need another heart transplant,” she said.
But since the time of her first surgery, the donor pool in New York had declined. Her only choice was to go out of state.
“In New York, you practically have to stop breathing before you can get a heart. My doctor recommended I be evaluated by the director of cardiac transplantation at Cedar Sinai in Los Angeles,” she said. “In May (2015), I was evaluated and in June I was asked to move out to Los Angeles to await a transplant. During my evaluation, it was decided that due to the lack of blood flow and the medications I had been on for years, my kidneys were failing and a heart and kidney transplant was suggested.”
All medication Zencheck had been taking to keep her alive in the wake of her first transplant, ironically, had destroyed her kidneys.
The second heart transplant and the kidney transplant were done at the same time.
“They started surgery on the night of July 8 and I got the kidney sometime early the next morning on July 9,” she said. “So, I guess you can say the surgery lasted for two days.”
This time, her donor was a 27-year-old woman.
“I stayed in California through mid-October. I was cleared by the transplant teams in California to return to my doctors in New York,” she said.
Zencheck is now on a three-month biopsy rotation.
“I feel great and I try to stay in good shape,” she said.
So, three times a week Zencheck can be found at the cardiac rehab center at Putnam Hospital Center.
“I feel exercise is so important to improving my stamina and quality of life,” she said. “I’ve been coming to Putnam Hospital Center for about a year and a half. I love it. As far as I am concerned, it saves your life. I know I am in good care. You never think twice about anything they say. You get to know them and become like a second family.”
The cardiac rehab center at PHC is overseen by Cathy Ahern, RN.
“We try to keep it as non-medical as possible,” she said of the rehab center, which more resembles a gym than a medical facility. “They know that they’re sick, but they are on the track to wellness. The whole point of coming here is we want them to feel they are getting better and feel safe and secure because initially, they are scared.
“We try to impart the importance of exercise and diet,” Ahern added. “The relationships they form here—we try to foist upon them the importance of socialization. We show them they are not the only people who have had something like this. There are a lot of people who they will meet on their journey who have heart disease.”
Zencheck said her experience has given her a profound appreciation for organ donors.
“Right after I had the transplant, both my kids and my husband signed up to be donors,” she said. “They will all be at the Walk to walk with me and support me. I’m looking forward to it.”