Group aids lung patients
LYNDORA - Little puffs of air could be heard last week at Butler Rehabilitation Centers, where The Breathing Partners and Pulmonary Support Group met for a holiday party.
The rhythmic puffs brought to mind the cozy hiss of radiator steam, but they came from something smaller: the portable oxygen units of some of the lung patients in attendance.
The sound was ironically comforting: a hum behind testimony from three of four people who received lung transplants this year.
Before and after their transplants, Martha Emerick, Melinda Kaufman and Bob Woodside, all who had suffered from emphysema, underwent rehab at the facility. They attended the party that day to share their stories with others.
Having abandoned the clear tubing and oxygen machines that kept them alive before surgery, the trio appeared healthy as they fielded questions from attendees, two of whom need transplants themselves.
One woman, who was taking steps to qualify for the transplant list, expressed concern about surgery survival rates and organ availability.
Some people wanted to know about the need for anti-rejection drugs.
Emerick, 60, of Saxonburg spoke of disappointment that comes from being called in on short notice for transplant surgery, then discovering the organ was deemed unsuitable - a common experience for transplant candidates.
Kaufman, 58, of East Brady spoke of the improved quality of life she enjoys, commenting her chance for longevity was ruled favorable with continued post-transplant therapy.
Woodside, 67, of Ford City brought a lightness to the discussion as he described how his new lung came with souvenirs: The lung, although fully functional, contained two buckshot pellets - a fact that led Woodside's to theories about how the anonymous donor had died.
Since a schedule of physical conditioning is mandatory for patients before and after transplant, the three had become acquainted during rehab therapy and through attending the support group meetings in Butler and at the UPMC Oakland campus, where their doctor is based.
Cindy Geary, the center's marketing director, said since it began offering pulmonary support about three years ago, the center averages about 20 lung patients at any given time.
"We're the only pulmonary rehab in the area to take care of any type of lung patients," she said. "It's not really very common to have one (transplant) patient - so to have four, all within the past four to six months, is very unusual."
Dr. Kenneth McCurry, doctor for all three patients and director of the adult lung and heart-lung transplant program at UPMC, agreed the concentration was somewhat atypical.
"In the United States on a yearly basis, there are about 1,000 lung transplants per year," he said. "There are right around 70 lung transplant programs across the United States," he continued, explaining the UPMC program is among the most sizeable, doing about 60 transplants per year.
"It's probably a little bit of an aberrance to have four patients in a relatively small community."
McCurry also said the ongoing support was a prime factor in the well-being of his patients. "Certainly, that's why we try to bring them together: so they can support each other. They can relay their experiences, talk about how they deal with the issues in their own lives - so they can help other people."
"All of these patients were obviously quite ill before, and now they are enjoying a good quality of life with their families. And they have this kinship with each other. I think that has really enriched their lives to some extent," he said.
Of the three, Emerick and Kaufman say they have spent a little more time interacting before and after their surgeries - partly because their exercise schedules have remained compatible.
"Well, I was on the list longer," Emerick said of the time she and Kaufman waited for transplants, which eventually happened in June and July - about a month after Woodside's.
"I was called twice before (Woodside and Kaufman), and the lungs didn't work out. … Melinda, she had a different blood type, so hers was a little harder to get. I kept saying, 'Melinda, you might go before me.' Here, heaven's sake, she was called. I was real happy: I called her every day."
Kaufman agreed the companionship provided comfort during a time of uncertainty.
"
Martha and I were (seeing each other) almost twice a week for the whole year and a half before surgeries
. … We could talk about what we were worried about," she said.
"Like when Martha went and had to come back two times (because the transplants didn't work out). We talked about that and we went to the support meetings down at UPMC. Martha and I … I think we went to all of them. We could talk about the medicines we were taking and what would happen after surgery.
"I don't ever remember being afraid," she went on. "We were so miserable not doing anything because we couldn't breathe. My thought was, 'It has to be better than this.' … It didn't seem that Martha had a lot of fear either - maybe because we did have each other to talk to."
"It definitely made a big difference. Even though I wasn't afraid. It was nice talking to somebody who was going through the same stuff as you. "
Despite the fact that Woodside did not see as much of his fellow transplant recipients, he agrees the close proximity to other lung patients has helped.
"We did talk a little," he said. Mainly we were worried about costs and all that, because costs are really high. Your prescriptions are out of sight, some of them."
"We compared notes a lot, to see how everybody was feeling - hoping to get it over with and all that," he said.
Even though the three lung recipients are moving on from their discomfort and experiencing better health, they say they will remain in contact.
"I would like to stay in touch," Kaufman said. "We said to Bob, 'We'll have to get together sometimes.' The way we're all scattered, we could meet at lunch somewhere in between."
"I'm thinking about going to their support group meetings," Woodside added of the group at Butler Rehabilitation Centers. "It's every other month. I'm thinking about making an appearance there. … I know I helped a few other people (at the party)."
