Living and Breathing His Truth About Organ Donation

Sharing Mayo Clinic

Living and Breathing His Truth About Organ Donation

By
Joel Streed

July 19, 2019

At 71, Robert thought he was too old to qualify for lung transplantation. Affected by a devastating, rare disease that destroyed his lung function, the Florida retiree had all but given up hope that the illness wouldn't claim his life — until his Mayo Clinic medical team stepped in and encouraged him to pursue a transplant.

When 71-year-old Robert received a double lung transplant at Mayo Clinic, the lungs he received from an organ donor not only gave him a second chance at life, but also fueled in him a new purpose.

"I feel like that organ donation was a gift from God," says the Florida resident. "He kept me on this planet for a reason. I want to get the message out about organ donation."

Robert never imagined he'd become an advocate for organ donation. As a fit and healthy retiree who used to play college athletics and always cared for his body, Robert had lived a life free of major medical problems. But six years ago, he developed shortness of breath and was diagnosed with pulmonary fibrosis, a progressive, irreversible condition that results in lung tissues becoming scarred and dysfunctional. While treatments exist to slow the progression of pulmonary fibrosis, lung transplantation is the only cure.

Since Robert's lung transplant, which took place on March 17, 2018, at Mayo Clinic's Florida campus, he has spoken widely about his disease and the need for more organ donors. He's written letters and made a video detailing his story and outlining the bleak statistics faced by individuals waiting for a transplant.

According to the nonprofit group Donate Life, which works to increase organ donation, only 58% of adult Americans are registered as organ donors. While one organ donor has the potential to save eight lives, each day, 22 people on organ donation lists die waiting for an organ. Approximately 114,000 U.S. residents now are waiting for a new organ.

"What I want to resonate through this is this isn't about me. It's about the wonderful and the marvelous things that Mayo Clinic does, and the absolute need for more organ donors," Robert says.

Devastating diagnosis

As is the case for many individuals waiting for an organ donation, Robert faced death prior to his transplant. Although the first signs of his pulmonary fibrosis were subtle, within just a few years Robert was oxygen-dependent.

"In 2013, my wife, Susan, and I took a trip to Vail, Colorado, to visit our son and his fiancée," Robert says. "I'm originally from Denver, so I didn't give any thought to problems with the altitude. But after the first day, I became ill, and I went to the hospital. They said I had acute altitude sickness, which is normal for that part of the county because Vail's at 8,000 feet. But they also said there was something going on in my lungs that they couldn't identify."

When Robert returned to his home in a suburb of Jacksonville, Florida, he continued "feeling crummy," he says. "I procrastinated, but I finally went to my doctor, and he sent me to a pulmonologist. What I was was out of breath, but I didn't realize it."

The pulmonologist diagnosed him with pulmonary fibrosis, which according to the National Institutes of Health, affects only about 100,000, or 0.03 %, of Americans. Robert immediately sought a second opinion and visited an out-of-state facility, where he was told to return home because he had one of the nation's premiere transplant facilities, Mayo Clinic, in his backyard, Robert says.

At Mayo Clinic, Robert met pulmonologist Augustine Lee, M.D., in the Department of Pulmonary Medicine. Dr. Lee informed Robert that although a few medications were available to slow the progression of his condition, none of them could stop it. "Fifty years of clinical trials show that no drug seems to impact this disease," Dr. Lee says.

"As I became more and more acute in my disease, Dr. Lee's the one that finally said: 'Bob you have to do this (lung transplant). This is your only way out.'"
Robert

Under Dr. Lee's care, Robert started taking one of the drugs approved for pulmonary fibrosis. He also began a daily exercise program to maintain the lung function he had.

"As I progressed, I became fairly dependent on oxygen," Robert says. "My progression went slowly. It's kind of like stairsteps. You go along for a little while, and you've been steady. And all of the sudden you drop off a cliff and go down a couple more notches."

When Robert reached the point that he required oxygen 24/7, he and Dr. Lee spoke in earnest about lung transplantation. "As I became more and more acute in my disease, Dr. Lee's the one that finally said: 'Bob you have to do this. This is your only way out,'" Robert says.

Individualized treatment

People who need a lung transplant must first qualify to be placed on the organ transplant waiting list. Factors such as diagnosis, symptom severity, underlying health and age all are considered.

"A lot of hospitals don't even talk to you if you're over 65," Robert says. "I was fairly negative about it, and I was going to let nature take its course. I had maybe six months left — maybe. But Dr. Lee, he's a terrific guy. He talked me into speaking to the transplant department because Mayo looks at the whole physiological makeup of the individual, and then they make a decision."

"Sometimes we see a very healthy 70-year-old who's a good candidate, and he's proven that to be true."
David Erasmus, M.B., Ch.B., M.D.

While the Mayo Clinic's cutoff guideline for lung transplant patients is 70 years old, patients older than 70 are considered on a case-by-case basis, says transplant physician David Erasmus, M.B., Ch.B., M.D., with the Transplant Center.

"He was a little older than the typical patient we would transplant, but he was in good shape," Dr. Erasmus says. "Sometimes we see a very healthy 70-year-old who's a good candidate, and he's proven that to be true."

After undergoing the extensive workup process to qualify to for the donation list, Robert was accepted. "All of his other organs were good, and he had maintained himself, despite the disease," Dr. Lee says. "Staying as physically fit as possible is hard to do when you have severely damages lungs. It takes a lot of diligence to maintain the level of fitness he did even up to transplant."

Once on the list, Robert prepared for a long wait. Normally, patients can expect a four- to six-month wait before their names come up. Although he feared his body would not hold out until his name was called, that fear was short-lived. Less than 48 hours after receiving his place on the list, Robert got a call that lungs might be available for him.

"Lungs are allocated according to a scoring system," Dr. Erasmus says. "The sicker the patient, the higher the score, and the higher the chance of being transplanted. If you have the disease he has, it tends to give you a higher score compared to some other diseases because it has a poor prognosis."

Following Robert's lung transplant operation, which was performed by cardiothoracic surgeon Ian Makey, M.D., in the Department of Thoracic Surgery, Robert spent two days in the ICU before moving to a recovery room. After an additional five nights in the hospital, he was discharged.

Although Robert's surgery was a success, and his new lungs worked properly, at first it was difficult for him to accept that he could breathe independently.

"You become so dependent on the oxygen, so I was afraid to get off if it," Robert says. "I kept asking, 'How many liters am I on?' And finally they looked at me and said, 'You haven't been on oxygen for 24 hours, so get rid of that crutch.' The nurses there, the doctors, they're good like that. They push you."

Purpose-driven

At home, Robert slowly rebuilt his strength and stamina. Early on, one of the most important components of his recovery was the care his wife, Susan, provided. "Fifty percent of your recovery is what your caregiver can do," Robert says. "They take care of the medicine and everything, so all you need to do is concentrate on your recovery. The job she did was miraculous, putting up with my ups and downs."

"Through all of this, he's been the model patient. He's done everything we'd ask of him. His heart was in it."
Augustine Lee, M.D.

Nine months after transplant, Robert's life had essentially returned to normal. Following his doctors' directions was instrumental for his recovery. "When the doctors tell you something, you'd better listen, and what they tell you to do, you'd better do," Robert says. "If they tell you to do your spirometry every day, do it. If they tell you to take your pills, you take your pills. If they tell you to work out 30 minutes every day, do it. You're crazy if you don't. This is a gift they've given you."

Robert's compliance with his medical team's instruction has been a huge factor in his successful outcome. "Through all of this, he's been the model patient," Dr. Lee says. "He's done everything we'd ask of him. His heart was in it."

Although Robert will never return to his pretransplant level of physical activity, he does many of the same things he was doing before: daily exercise, dinners out, hosting gatherings at his house. And every chance he gets, Robert talks about his illness and his transplantation journey in the hope of increasing awareness about the lifesaving gift of organ donation because, he says, "I'm blessed and I want to give back."

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