Carol Kankoski won’t be home for Christmas.
She won’t be home for New Year’s or Presidents Day. If she’s lucky, she’ll be home for St. Patrick’s Day, but it’s not likely.
Kankoski, of Mattydale, will be spending those holidays in the same place she’s spent the last eight weeks: the cardiac care unit of Strong Memorial Hospital in Rochester, where she is awaiting a heart transplant. Kankoski was diagnosed with cardiomyopathy—literally translated as a deterioration in the function of the actual heart muscle—in 1999. Her heart function began to decline in 2009 to the point where her regular cardiologist, Dr. Daniel Fuleihan of the New York Heart Center in Syracuse, decided to send her to Strong for regular checkups. Her last checkup was this past October. Kankoski has been at Strong ever since.
“She has done very well over the last two years,” said Dr. Eugene Storozynsky, Kankoski’s cardiologist at Strong Memorial. “Then I saw her back a few months ago… At that time, she had started to feel poorly. We decided to do some specialized testing and see whether her symptoms were just getting worse or if it was actually that her heart function had gotten worse. As a result of that testing, we decided she needed to be admitted and listed for transplant.”
“The day they kept me was very emotional,” Kankoski said. “I thought I’d go home. But everybody tells me I’m quite a tough one.”
Kankoski said she was saddened at the prospect of spending the holidays in the hospital while her family, which includes her two daughters, five grandchildren and one great-granddaughter, all of whom live in Syracuse.
“They came out to visit me on Thanksgiving,” she said. “For Christmas, it depends on the weather. I don’t want to worry about them driving both ways if there’s a snowstorm. I’d rather they just call.”
Kankoski will remain at Strong until a new heart becomes available for her.
Donors needed
Kankoski is one of nearly 10,000 patients awaiting an organ transplant in New York state. Nationwide, more than 112,000 patients are waiting for a new heart, lung, pancreas, kidney, liver or intestine.
Unfortunately, many people won’t get the organs they need to survive.
“A little over 2,000 transplants are done a year across the country, and about 10,000 patients are waiting for transplants in New York state,” Storozynsky said. “That means a lot of patients will not get transplanted. Some will wait a very long time. Some will die waiting.”
According to Donate Life New York, the state registry of organ donors, 658 people died statewide while waiting for organ transplants last year. This means that someone dies every 13 hours in the state because of the organ donor shortage.
In most cases, all it takes to become an organ donor is to discuss your wishes with your family, according to Rob Kochik, executive director of the Finger Lakes Donor Recovery Network (FLDRN).
“The real message we’re trying to get across is to encourage people to consider organ donation,” Kochik said. “Let your family know. When families know what your wishes are, they’re relieved that they don’t have to make that decision themselves.”
The FLDRN is responsible for matching potential organ donors with recipients in a 20-county area in the greater Syracuse-Rochester area. The organization is one of 58 organ procurement organizations in the U.S. and one of four in New York state.
“Hospitals are required by federal law to contact us every time a patient suffers loss of neurological function,” Kochik said. Whenever someone is admitted with a stroke, neurological injury, a car accident, brain injury—any time there is concern enough [that brain death is imminent], we go on site. We have staff standing by 24 hours.”
Once all neurological function is lost, a patient is considered brain dead. Then it is possible for their other organs—heart, liver, lungs, etc.—to be donated. The patient’s blood pressure and heartbeat are artificially maintained through machines and the patient can enter surgery for the organs to be harvested. This assumes that the patient has discussed his or her wishes with family members.
“We hope that there has been good communication with the family and that they’ve already indicated their wishes, and they’ve registered to donate their organs,” Kochik said. “If they’re already on the Donate Life Registry, we can make someone else’s wish come true. If they haven’t, it’s an opportunity for their loved ones to give life to someone else. They have to consider based on what the patient might have wanted.”
Tell your family
As it is, many people don’t think about discussing organ donation with their families until it’s too late. Kankoski said she considered it, but never made the final step of discussing it with her own family.
“Honestly, I thought about being an organ donor myself, but I never went through with it,” she said. “Then I found out I had a bad heart. It’s wonderful if people do it. There are very few in New York state. You wouldn’t think so, the size of the state being what it is.”
Kankoski said her own predicament has encouraged her loved ones to rethink their complacency on the subject.
“A friend came to visit me, and when she went home, she said she’s putting her name right on the list,” she said. “Her whole outlook on life changed. People should think about it, really think about it. You see more when you’re on this side of things. I always thought about it, but I never got around to it. I’m sorry I didn’t. Now I can’t.”
Storozynsky said it’s imperative that people make their families aware of their feelings on organ donation.
“That’s the most important thing,” he said. “Make your loved ones aware of your wishes. Consider becoming an organ donor. Ultimately, if you as an organ donor make the decision, it takes away the stress surrounding the unfortunate circumstances your family face at that tough time.”
In addition, discussing the issue and raising awareness will surely add names to the donor registry.
“If all the folks in New York state or even upstate New York talked with their families about organ donation, if they were willing to donate their organs after they died, that would significantly reduce the shortage of organs available and give the gift of life to someone else in the unfortunate circumstance of their own demise,” Storozynsky said.
The waiting game
In the meantime, Kankoski can do little but wait and hope for the best.
“The waiting – it’s tough,” she said. “That’s the tough part. It’s very bittersweet. I want a heart, but someone has to pass away for that to happen.”
But she tries to keep her hopes up, with the help of the staff at Strong Memorial and her fellow patients. Also awaiting transplants are a young man from Rochester and another man from Watertown; the three of them spend so much time walking around the ward that nurses have dubbed them “The Pole Brigade.”
So Kankoski puts on her brave face and gets through each day. But it’s not easy.
“I’m not going to say I’m not afraid, because I am,” she admitted. “But the recipients come to visit us, and that give me a lot of hope. One was in here eight months after surgery. Another was in two weeks after. It’s amazing to see how they get around. Hopefully that’ll be us in a few months.”
For more information about how to become an organ donor, visit donatelifeny.org.
