Holly Mulkerin and Frank Bianchi received heart transplants at Cleveland Clinic a day apart, and they met each other during recovery. During that time, Mulkerin hatched a plan to help others on the list cope with the wait. Now, the two run a volunteer program where they personally call people on Cleveland Clinic’s organ transplant list.
Waiting on the transplant list can be the worst part
Mulkerin waited for two years for a heart transplant. Every day, she wondered whether the phone would ring. Would she get the call? “You get up depressed, and it seems like you’ll never get a heart,” she says.
Bianchi agrees. “The hardest part about being on an organ recipient list is the wait time. When you’re at home, you never know what’s going on, and there are so many patients going through this that nurses and coordinators don’t have time to contact everyone on a weekly basis.”
Mulkerin, 55, of Medina, eventually wound up on the transplant list after a serious injury took out most of the left side of her heart. “They tried very hard to keep me off the list with medication, but nothing ever worked,” she says. With congestive heart failure, she was in and out of the hospital every six weeks for what she and her husband called her “tune-up.” Eventually, she was given a pic line so she could administer her own IV Lasix at home. This kept her out of the hospital for six months—the longest stretch—but every day was a slow decline.
“I gradually started to see things I couldn’t do anymore,” Mulkerin says. “At first, I couldn’t clean the house. Then I couldn’t really stand up long enough to cook dinner. The day it really got me is when my husband put a load of laundry in front of me and I didn’t have the energy to fold it. It’s the little things like that that slowly get taken away that may seem small to some people, but when you can’t to them anymore, it’s huge.”
By 2006, Mulkerin was put on the heart transplant waiting list at Cleveland Clinic. She stayed home for 18 months, routinely giving herself IV Lasix and meeting with doctors every three months. “But in between that time, I was just sitting at home wondering, ‘Do they know I am on the list?’,” she says. ”I used to call them and ask, ‘You didn’t forget me, right?’ It would have been nice to have someone call and touch base with me so I felt they knew I was still here.”
Those feelings were the impetus behind the volunteer group Mulkerin started after her transplant, and she asked Bianchi to join. There were so many calls to make the first couple of months that she needed help.
Mulkerin received her heart transplant on Jan. 28, 2009. She had been in the hospital for six months hooked to a mechanical heart. “I was pretty much down to days to live,” she says. The transplant didn’t take smoothly. Mulkerin didn’t wake up for two and a half weeks. “But I came around—I fought my way back,” she says.
During the time she was waiting at Cleveland Clinic for a heart, she met Bianchi, 56, of Brunswick, who was blind after a double brain aneurysm in 1984, had gone through a kidney transplant in 1987 and suffered heart attacks since the 1990s. He was in severe congestive heart failure when he was put on the transplant recipient list at Cleveland Clinic in 2007. Bianchi waited at home until October 2008 when he received a call that it was time to begin his wait in the hospital for the heart. That lasted 100 days. Then, on Jan. 29, 2009, a day after Mulkerin, he received his transplant.
“I have been doing great ever since,” Bianchi says. “My appointments have come out perfect, my heart catheterization is good, and my doctors are pleased with my progress.”
Mulkerin shares that she and Bianchi represent opposite ends of the transplant spectrum. She struggled, fighting her way back to health—and Bianchi’s experience was more typical in terms of recovery. Both have something to offer people waiting for organ transplants who need someone to talk to.
Helping those still waiting for a heart transplant
Pre- and post-transplant patients who are in the hospital have a Cleveland Clinic heart transplant volunteer visit them, but prior to Mulkerin’s idea, there was not a program for patients who wait at home for their transplants. All volunteers receive training through Cleveland Clinic’s Volunteer Ambassador program, and then work with heart transplant social worker Kay Kendall to determine appropriate patients to contact.
Mulkerin and Bianchi act as a liaison between patients and social workers at Cleveland Clinic by individually talking to about 32 people every month. “They can ask us questions that the doctors can’t answer because we have been through it,” she says, relating that she and Bianchi do not give medical information or advice, but instead offer emotional support—the perspective of having been there and understanding the isolation that results from waiting at home for a new organ. “We tell them what they can expect and we provide comfort,” Bianchi adds.
“We encourage them that what they are feeling is normal, which makes a huge difference because when you are going through this, you think you’re the only one at home just waiting,” she says. “The more we talk to them, the more comfortable they get with us and they feel they can ask us anything.”
Their calls are very well received. “I have a couple of patients I have had dinner with post-transplant,” Bianchi relates, adding that volunteering reminds him of his journey to get a new heart and his duty of taking care of it. “It keeps me motivated to do my workouts, watch my diet and to keep myself as healthy as possible,” he says.
Mulkerin adds, “I feel like with everything I went through, God kept me here for a reason, and I feel like part of that reason is to help other people get through this. If I can be there for someone else…they inspire me as much as I inspire them.”