Over the past 14 years, Damian Neuberger has become an expert on his health.
The double-lung transplant patient monitors his spirometry levels on a near-daily basis. He has to be mindful of his salt, potassium and salt intake, and wears a face mask when working outdoors. Neuberger, 68, takes more than 20 pills a day, on time and every time.
As told in a story in the Announcements April 15, 2010, Neiberger, who learned in 1983 that he had idiopathic pulmonary fibrosis, received a pair of lungs from a 19-year-old man in 1997. With a typical survival rate of about five years, Neuberger’s 14 years with his lungs are extraordinary.
Charles Alex, Neuberger’s physician at Loyola University Medical Center, said Neuberger is very detail-oriented and “the type of patient who tends to do well. He takes very good care of himself.”
Yet despite a strict adherence to his treatment plan, Neuberger knows there are no guarantees.
Now Neuberger faces a new challenge: the immune-suppressing drugs he diligently takes to prevent transplant rejection are causing kidney failure.
Neuberger needs another organ.
His name was added to the National Kidney Registry last September when his health took a turn for the worse and he was nearly put on dialysis, he said.
Neuberger’s wife, Judy, was willing to donate a kidney of her own but the health requirements are so stringent that she didn’t qualify.
And so Neuberger has been waiting for a stranger to step forward.
Since the kidney is most sought-after transplant organ in the U.S., others are in need, too: 89,490 of them to be exact, according to the Organ Procurement and Transplantation Network.
The timing of a transplant depends on geographic location. In Chicago, the average waiting time for a kidney is six years.
Neuberger has set his sights on Madison, where the average patient waits between six and 22 months for a kidney.
The thing with transplants, however, is they sometimes fall through. Time is of the essence with organs from deceased donors, and not every kidney is a good match for the intended recipient.
Sometimes living donors decide they don’t want to give after all.
Under those circumstances, it’s back to the waiting list, Neuberger said.
“Seventeen people die every day waiting for an organ and that’s something that can be avoided,” Neuberger said. “Of all the people in Illinois, if 130 volunteered to step forward, it would wipe out the waiting list.”
Neuberger said myths — like the one that doctors won’t save patients who are registered donors — prevent people from considering donation their organs.
“What doctor wants to be known as a doctor whose patients always die?” Neuberger asked. “They’d be out of a job.”
Amy Lu, director of the intra-abdominal transplantation division at Loyola, explained that organs can only be salvaged from bodies that are still alive and functional. Once blood flow is cut off, the body begins deteriorating within minutes.
“If the doctors don’t save your life and don’t treat you, then you’ll never become a donor anyway,” she said. “It’s only until after you’re declared brain dead that the donor network is called in.”
Lu said while a transplant is not the only solution to treating kidney failure, it is certainly the best.
“A transplant not only provides quality of life but the life survival benefits, too,” Lu said. The life expectancy of patient with a kidney transplant is two times greater than one who receives dialysis treatments, she said.
Donors, Neuberger recognized, are extraordinary people.
“Those people are giving such an incredible gift” that can only be described as “agape,” he said, “the sacrificial giving of self for someone else’s benefit.”
Neuberger still chokes up when he discusses his lung donor, Chad, a 19-year-old boy from downstate Illinois, and his relationship with Chad’s family. “I’m grateful to them and will always be grateful,” he said.
Chad’s parents often tell Neuberger that he is their “ray of sunshine,” he said.
“They think something good came from tragedy,” he said, and that “a part of their child is still alive.”
Neuberger is especially grateful since fewer than half of lung transplant patients survive for five years, let alone a decade.
The double-lung transplant patient monitors his spirometry levels on a near-daily basis. He has to be mindful of his salt, potassium and salt intake, and wears a face mask when working outdoors. Neuberger, 68, takes more than 20 pills a day, on time and every time.
As told in a story in the Announcements April 15, 2010, Neiberger, who learned in 1983 that he had idiopathic pulmonary fibrosis, received a pair of lungs from a 19-year-old man in 1997. With a typical survival rate of about five years, Neuberger’s 14 years with his lungs are extraordinary.
Charles Alex, Neuberger’s physician at Loyola University Medical Center, said Neuberger is very detail-oriented and “the type of patient who tends to do well. He takes very good care of himself.”
Yet despite a strict adherence to his treatment plan, Neuberger knows there are no guarantees.
Now Neuberger faces a new challenge: the immune-suppressing drugs he diligently takes to prevent transplant rejection are causing kidney failure.
Neuberger needs another organ.
His name was added to the National Kidney Registry last September when his health took a turn for the worse and he was nearly put on dialysis, he said.
Neuberger’s wife, Judy, was willing to donate a kidney of her own but the health requirements are so stringent that she didn’t qualify.
And so Neuberger has been waiting for a stranger to step forward.
Since the kidney is most sought-after transplant organ in the U.S., others are in need, too: 89,490 of them to be exact, according to the Organ Procurement and Transplantation Network.
The timing of a transplant depends on geographic location. In Chicago, the average waiting time for a kidney is six years.
Neuberger has set his sights on Madison, where the average patient waits between six and 22 months for a kidney.
The thing with transplants, however, is they sometimes fall through. Time is of the essence with organs from deceased donors, and not every kidney is a good match for the intended recipient.
Sometimes living donors decide they don’t want to give after all.
Under those circumstances, it’s back to the waiting list, Neuberger said.
“Seventeen people die every day waiting for an organ and that’s something that can be avoided,” Neuberger said. “Of all the people in Illinois, if 130 volunteered to step forward, it would wipe out the waiting list.”
Neuberger said myths — like the one that doctors won’t save patients who are registered donors — prevent people from considering donation their organs.
“What doctor wants to be known as a doctor whose patients always die?” Neuberger asked. “They’d be out of a job.”
Amy Lu, director of the intra-abdominal transplantation division at Loyola, explained that organs can only be salvaged from bodies that are still alive and functional. Once blood flow is cut off, the body begins deteriorating within minutes.
“If the doctors don’t save your life and don’t treat you, then you’ll never become a donor anyway,” she said. “It’s only until after you’re declared brain dead that the donor network is called in.”
Lu said while a transplant is not the only solution to treating kidney failure, it is certainly the best.
“A transplant not only provides quality of life but the life survival benefits, too,” Lu said. The life expectancy of patient with a kidney transplant is two times greater than one who receives dialysis treatments, she said.
Donors, Neuberger recognized, are extraordinary people.
“Those people are giving such an incredible gift” that can only be described as “agape,” he said, “the sacrificial giving of self for someone else’s benefit.”
Neuberger still chokes up when he discusses his lung donor, Chad, a 19-year-old boy from downstate Illinois, and his relationship with Chad’s family. “I’m grateful to them and will always be grateful,” he said.
Chad’s parents often tell Neuberger that he is their “ray of sunshine,” he said.
“They think something good came from tragedy,” he said, and that “a part of their child is still alive.”
Neuberger is especially grateful since fewer than half of lung transplant patients survive for five years, let alone a decade.
“I don’t know how people get through this without faith,” he said.”If these are coincidences, I better go out and buy lottery tickets.”
His luck is being tested again.
A few weeks ago Neuberger received a call at 2 a.m. that a hospital in Madison found a donor match.
Neuberger had to delay the procedure due to a previously-scheduled hospital appointment but says the transplant might happen in September.
“I’m trading dying for living,” Neuberger said. “It’s all about hope.”
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