It wasn’t that long ago that when an organ failed, the patient died. But thanks to the marvel that is modern medicine — and the generous contributions of organ donors and their families over the past several decades — organ transplantation is becoming increasingly common for patients with certain conditions, chronic obstructive pulmonary disease among them.
COPD is a progressive lung disease that includes chronic bronchitis and emphysema. COPD makes it increasingly hard to breathe over time, and although the disease can typically be well managed with medications — inhaled steroids and other treatments that open up the airways and make it easier to breathe — patients with late-stage COPD typically experience a negative impact to their quality of life. For some of these patients, surgery may be an option. In the most extreme cases, where all other options have been exhausted, lung transplantation may offer a new lease on life.
Despite the potential risks and complications, having a shot at an extra five or six years — the typical increase in life expectancy that lung transplant patients can anticipate — is a chance worth taking. Just ask Robert Fealy, 60, of Columbus, Ohio. On June 14 and 15, 2017, he underwent a double lung and liver transplant to restore his health after a lifelong battle with COPD.
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Although most cases of COPD result from cigarette smoking, the Centers for Disease Control and Prevention reports that up to 25 percent of patients never smoked. Genetic factors, including a condition called alpha-1 antitrypsin deficiency, can cause some cases of COPD. (In A1AD, a protein manufactured in the liver cannot reach the lungs where it repairs damage incurred by the cells from environmental factors. Patients with this condition often develop lung and/or liver disease because of this protein-release problem.) Fealy learned he had A1AD in 2005, around the same time that he had to retire from his job managing a supermarket because at age 48, he couldn’t breathe well enough to keep working.
Over the next decade, Fealy’s health gradually declined. He was prescribed several medications to manage the disease, but his COPD progressed and he eventually needed supplemental oxygen all the time. In 2013, his name was added to a waiting list for a lung and liver transplant.
“The average national wait time in the U.S. is about 3.5 months,” says Dr. Wayne Tsuang, a pulmonologist in the lung transplantation section and critical care medicine at the Cleveland Clinic where Fealy had his transplant. “The wait can be shorter or longer depending on the patient’s lung allocation score,” a priority grade based on the health of the patient. Generally speaking, “the sicker the patient is, the higher their priority score,” Tsuang says, but there is such a thing as being too sick.
That overall health question was one factor why Fealy’s wait time was significantly longer than most patients’. For Fealy, “he would get so sick they would have to wait and try to get him to get a little bit better. And then they’d put him back on the list. It was such a roller coaster,” says his wife, Jeanne.
Tsuang says that in addition to assessing the severity of the patient’s COPD, the care team will also determine whether the patient has ” other comorbidities, such as heart disease or bone disease. Every transplant center will do a thorough evaluation to see what the risks are of putting that patient through a lung transplant.” This evaluation also considers whether the patient will be able to handle physical therapy and rehabilitation after surgery and whether they’ll be able tolerate the anti-rejection medications they’ll have to take for the rest of their lives to prevent the body from attacking the transplanted organ or organs.
In addition, finding the right donor can be a challenge. Tsaung says donor organs must be the same blood type as the recipient, and finding a healthy organ donor near enough to the hospital so that a timely transplant can be made requires logistical coordination. Because Fealy “needed multiple organs and all of the organs needed to come from the same donor,” Jeanne says, that made the logistics more complicated for him than for an average lung transplant patient. “There’s only about five hospitals in the U.S. that do this sort of transplant and Robert was [patient number] 70 on the list to ever have this done,” she says.
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During the waiting period, Fealy was essentially homebound and taking high doses of steroids while tethered to an oxygen tank. “His liver was failing and both of his lungs were failing. He was just very sick and doing anything to survive,” Jeanne says. She describes him as being “gray” because his blood-oxygen level was so low that the color drained out of his face, and that at times, they nearly lost hope that he would receive the life-saving organs in time. Finally, the call from the clinic came two days before the couple’s 38th wedding anniversary. “I think Robert had it all worked out to give me a great anniversary present,” she says.
The post-surgery transformation was remarkable and immediate. While still in the intensive care unit in the days after the surgery, Fealy, who’s originally from Weston, West Virginia, was able to sing “Country Roads (Almost Heaven West Virginia)” with a music therapist who stopped by. “He sang almost as if he was 20 years old,” Jeanne says. “It was amazing.”
Although the transplant itself went well, about six weeks after the operation he suffered a collapsed heart valve, which necessitated open heart surgery. Today, though, Fealy “is doing well. He’s walking. He’s enjoying his grandchildren. He’s trying to start all over and trying to figure out how to do everything in life that he hasn’t been able to do for so long,” Jeanne says.
For his part, Fealy says, “I feel great! I’m a little weak in the knees and still recovering, but with what I’ve been through, I feel great.” He says he’s thrilled to no longer have to lug around an oxygen tank. “I still have issues. Don’t get me wrong. I went through some major surgeries and have soreness and numbness. But compared to where I was six months ago, it’s a miracle where I’m at now.”
Some of that is because Fealy was a motivated patient with a good support network behind him, things that Tsuang says the care team will look at in assessing whether a patient should undergo a transplant. Fealy was also willing to do the work required to regain his health; Tsuang says patients often ask him during clinic visits prior to a transplant how they can best help themselves achieve a favorable outcome from this arduous surgery. “I tell them the best thing you can do is exercise. If you have COPD, participate in pulmonary rehabilitation or join the local gym or Y to make sure you stay active in keeping your muscles strong.” He says that after months or years of physical decline from the lung disease, patients who receive a new set of lungs need time to let the rest of their body catch back up to their new lungs.
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“I tell patients that they may have a great new set of lungs, but the rest of their body has been debilitated by COPD or another disease for many, many years. It takes time to rehabilitate the rest of the body to get them stronger and to get them to the quality of life they had before” they got very sick, and that rehabilitation can take a couple of weeks, even a few months, he says. But in the end, the effort is worth it and priming the pump with exercise in advance of the surgery is the best thing they can do to get ready for “the biggest race of their life. They have to be in shape for it. Exercise is going to be the most important thing a patient can do.”
Fealy also says keeping faith was critical to his survival. “You can’t give up. You have to fight and keep a positive attitude. You just gotta hang in there.”
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What’s It Like to Have a Lung Transplant? originally appeared on usnews.com
