Published in The Plain Dealer (centerpiece of the Health section). Print version (PDF) PAGE 1 and PAGE 2.
Also published on Cleveland.com: http://www.cleveland.com/healthfit/index.ssf/2012/09/those_on_heart_transplant_list.html
By Casey Capachi
CLEVELAND, Ohio — The morning began like any other for Frank Bianchi of Brunswick. The 56-year-old former steelworker awoke at about 5, ran for an hour on his treadmill and proceeded to carry out his daily duties as a self-proclaimed professional volunteer.
Every day, Bianchi, who lost his vision after a brain aneurysm at age 28, phones several of the 35 individuals on his list. Each is waiting for a heart transplant, just as he was 3½ years ago.
Bianchi checks in with them at least once a month, as part of a volunteer program started by his close friend Holly Mulkerin of Medina, who received her new heart at the Cleveland Clinic on the same day Bianchi did. Mulkerin, 55 and a retired hospital technician, and Bianchi live only four miles apart, but they did not know each other before their transplants.
Mulkerin says she wanted to call others during “the hardest time” of the waiting process, when they’re at home and unsure if they will ever receive a new heart.
“On the first call, we explain why we’re calling as a volunteer but to also let them know that I’ve been where you’ve been. I’ve gone through what you’re feeling. What to expect if you’re having a hard day and wondering if this is normal,” says Mulkerin.
“We can answer those questions a doctor can’t.”
Just the voice she needs to hear
Bianchi hears the phone ring a few times before Lisa Cunningham picks up at her parents’ home in Powell, Tenn. She says she’s always happy to see Bianchi’s number on caller ID. Especially on a day like today, when she’s feeling nauseous and praying it’s not another infection.
Cunningham chats with Bianchi and tells him that her husband took their daughter to a national fiddle championship while she remained at home to rest.
It’s common, says Bianchi, that patients want to talk about nonmedical matters. Many have become friends, and he continues to check in and arrange lunch dates with them months after their surgeries.
“I’m so happy that [my daughter] gets to see all of the things that I never got to see. They saw Big Faithful,” says Cunningham, telling Bianchi about her husband and daughter’s road trip through Yellowstone.
“You’re going to get to do those things,” Bianchi says firmly. “You’re going to have a new heart.”
In Ohio, there are over 140 people waiting for a heart transplant, according to Lifebanc.
The Clinic performs 50 to 60 heart transplants a year, says Kay Kendall, a social worker with the heart transplant program at the Clinic. The program began in 1984 and since then has performed over 1,580 transplants.
When you’re placed on the waiting list, says Mulkerin, “You are put in a state of limbo.”
“I thought when I was home waiting, ‘It sure would be nice if somebody called me every now and then,’ ” laughs Mulkerin, who waited 2½ years for her heart.
After regaining some of her strength as a former aerobics instructor, Mulkerin approached Kendall with her idea. Several months later, and after being trained as a hospital volunteer, Mulkerin started calling a handful of patients Kendall recommended.
“More and more,” Kendall says, patients are waiting at home instead of at the hospital, due to advancements in medication and cardiac assist devices.
The initial feedback was so positive, says Kendall, that she sent Mulkerin 67 names. Mulkerin quickly found that the patients had so many questions, there was no way she could reach them all once a month. That’s when she enlisted Bianchi’s help.
Of the 80 to 100 patients Mulkerin and Bianchi have contacted so far, Kendall says only about five did not want to be called back.
Mulkerin takes 15 hours a week talking to patients over the phone. She’s been calling some of them for two years, and the conversations have moved from the uncertainty and fear leading up to a transplant to the joy of watching their children grow.
“They actually call us now,” says Mulkerin.
Mulkerin spends much of her time raising awareness for organ donation. She takes 43 pills a day, a variety of supplements and medications to prevent her body’s rejection of her new heart.
“I know I’ve made a big difference in driver’s ed classes because I’ll ask the kids, ‘How many of you are organ donors?’ before I start my talk, and less than half will raise their hands,” says Mulkerin. “Then I’ll do my talk and ask, ‘How many of you are going to sign up?’ And almost all of them raise their hands.”
Their hearts are in it
As the sun sets over the Cleveland skyline, visible from the rooftop pavilion of the Clinic, Bianchi, joined by his wife, Pam, and son, Frank Jr., greets members of his “transplant family.” A few dozen people have come to this month’s heart transplant program dinner at the hospital.
“It’s an exclusive family — we only let about 55 people in it a year,” jokes Don Peshek, 61, who received a heart transplant five years ago. “We’re an emotional group, there’s no doubt about that.”
One by one, the patients stand and either share their number or say how many months they’ve been waiting for a new heart. The crowd, including their families, applauds as each one sits back down.
“I’m No. 1,352,” announces William Dlugos, 74, a retired electrical engineer from North Royalton who served 25 years in the Air Force.
Dlugos is wearing a white polo shirt embroidered with a bright red heart logo and black lettering that reads, “I had a change of heart on May 7th 2008.”
Dlugos’ wife, Marilyn, keeps a plastic bag containing several dog-eared photos in her purse. The pictures are of the 17-year-old girl who died in a car crash in Kentucky and gave her husband a second chance at life.
The photos are a gift the Dlugoses received after a rare, mutually agreed-upon visit with the donor’s family. William still wears the beaded bracelet the girl’s grandfather gave him.
“I feel very close to her,” says William. “Especially at church, a lot of times when I’m praying, I just slip my thumb down and feel the pulse.”
Following the dinner, Bianchi talks to a man whose voice he recognizes immediately but is meeting face to face for the first time tonight.
Fred McConnell, 65 and a retired dairy farmer from Wellington, has been waiting for a heart for a year and a half. He is a Status 2 patient, meaning that, unless his condition worsens, he won’t gain seniority on the waiting list.
McConnell apologizes to Bianchi for missing some of his calls, saying he is still able to work outside on his property for most of the day.
“Any support from anybody who’s been through it lifts you up,” says McConnell.
Bianchi promises to keep calling until McConnell answers.
Organ donation registration
In Ohio, residents can register to become organ donors at the Bureau of Motor Vehicles when renewing a driver’s license or state ID, or by going to donatelifeohio.org and either sign up online or print out a form to mail in to the Ohio Bureau of Motor Vehicles.