Double-lung transplant survivor stays busy since retirement

Fewer than half of lung transplant patients survive for five years.

But nearly 14 years after receiving a double-lung transplant at Loyola University Medical Center, Damian Neuberger's lungs continue to function normally. He breathes easily while walking four or five miles a day.

Neuberger, 68, of Glenview, has become a role model for the patients he meets in Loyola's lung transplant support group.

His advice:
"You have to be incredibly compliant with your treatment plan. Take your pills on time, every time. Any time you start to get sick, call your center immediately. And enjoy life."

Lung transplant patients need to take as many as 20 or 30 medications. They also have to regularly monitor their lung function, blood sugar and blood pressure.

Neuberger's physician, Dr. Charles Alex, said Neuberger is very detail-oriented, "and this is the type of patient who tends to do well. He takes very good care of himself."

Neuberger also credits his physicians, nurses and technicians at Loyola. Karen Pelletiere, RN, his primary nurse co-ordinator, plays the key role in his day-to-day care.

"It's not enough to say they're outstanding," he said. "It goes beyond that."

In 1983, Neuberger was diagnosed with idiopathic pulmonary fibrosis -- a scarring or thickening of the lungs, with no known cause. Over time, it became increasingly difficult to breathe. Eventually, he was tethered to a 10-pound oxygen tank 24 hours a day. He couldn't even talk without getting winded.
On Nov. 14, 1996 -- his 54th birthday -- Neuberger was put on the transplant waiting list. "I remember seeing the bare trees and wondering whether it would be my last winter," he said.

While on the waiting list, Neuberger met a patient who was more than seven years post-transplant. "It gave me hope that this was going to work," he said.
A pair of lungs became available in October, 1997. Neuberger went home after 10 days in the hospital. Six weeks later, he returned to work as senior research scientist at Baxter Healthcare. (He is a PhD microscopist, a specialist in all types of microscopes used as problem-solving tools.

The following spring, Neuberger bought a bike and took a 19-mile ride. "It was glorious, being able to breathe and not gasping for breath," he said.
Lung transplant patients generally do not survive as long as most other organ transplant patients, because transplanted lungs are more subject to chronic rejection. The five-year survival rate of lung-transplant patients is 47.3 percent, according to the Organ Procurement and Transplantation Network.

Fortunately, Neuberger has not experienced chronic rejection. But the immune-suppressing drugs he diligently takes to prevent rejection are causing kidney failure, and he likely now needs a kidney transplant. He also has diabetes, another side effect of the medications.

But Neuberger is otherwise in good health, and he has stayed busy since he retired in 2004. His activities include:
-- Spending time with his wife, Judy, their two children and three grandchildren.
-- Consulting work.
--Care-giving ministry at his church.
-- Volunteering with three groups at the Chicago Botanic Garden.
-- Board member and newsletter editor of Second Wind Lung Transplant Association.
-- Member of the Thoracic Transplantation committee and the Lung Subcommittee of the United Network for Organ Sharing/Organ Procurement and Transplantation Network.

"He is selflessly giving back to the community," Alex said.