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Back on Top: Equipped with New Lungs, Cystic Fibrosis Patient Summits Yosemite’s Half Dome

Advance With MUSC Health
June 25, 2021
John Huffman and the mountains.

John Hoffman could see the summit within reach. He'd dreamt of conquering the 19-mile trek to the top of Yosemite National Park's Half Dome for a decade. Elevation? 5,500 feet. But ever since his lung transplant in 2019, he had become more determined to reach the top of this mountain, both a literal and metaphorical goal.

As a lifelong sufferer of cystic fibrosis, Hoffman learned to live with his condition and continue his love of the outdoors, until five years ago when walking across a room in his home left him feeling breathless and defeated. It'd been five years since he'd last seen his normal self, negotiating trails with the best of them. But now, he had done it, making the final 400-foot ascent on the steep granite dome assisted by steel cables, renewed confidence and a brand new lung.

Life with Cystic Fibrosis

John Huffman has been a lifelong sufferer of Cystic Fibrosis

Originally from Fort Worth, Hoffman has lived in Charleston since 2009, working with Boeing as a liaison engineer. For most of his life, he's been an outdoors enthusiast, setting off to the North Carolina mountains at any given chance to immerse himself in nature with the next hiking or rock climbing adventure, all while living with a chronic illness.

He's married with two sons, a nine-year-old and an almost three-year-old. His youngest is the same age Hoffman was when he was diagnosed with cystic fibrosis. "It's just something I grew up with: medicine, breathing treatments, lots of doctor's appointments, lots of care - all the things you'd expect growing up with a chronic illness," he says. "But it didn't slow me down too much; it was just a constant source of stuff to deal with."

It wasn’t until Hoffman’s late 20s, when he moved to Charleston, that he saw a progressive decline in his health, particularly his lung functionality. "My lungs were scarred and full of junk, basically," he says. "It took me a really long time to take a deep breath."

Hoffman felt completely depleted of oxygen after any minimal task. For two years, he had to carry an oxygen supply with him in order to breathe normally, so hiking mountains was out of the question.

It was around this time that Hoffman stopped flying for work, too, realizing how much his oxygen levels were dropping after every flight. He likens being in an airplane to being on a "pretty decent-sized mountain." So no more extracurricular activities - any extra physical exertion he could muster would be saved for his family.

Something had to give.

New Lungs

Since moving to Charleston, Hoffman had been seeing Dr. Patrick Flume, the endowed chair for the MUSC Health Cystic Fibrosis Center. According to Flume, cystic fibrosis patients historically have progressive lung disease, which causes patients to lose lung function and puts them in danger of having heart failure. "And so they are a perfect indication for lung transplantation," he says.

MUSC Health's Cystic Fibrosis Center and Transplant Center teams began collaborating together two years ago to communicate the needs of such patients who require both the total care of the cystic fibrosis team and the respiratory and recovery care from the transplant team. This helps maintain continuity with the patient, exponentially improving, and in some cases, saving the lives of cystic fibrosis patients like Hoffman.

It's because of this strong collaboration between the MUSC Health cystic fibrosis and transplant teams that Flume recommended a lung transplant to Hoffman. That, and he knew what was at stake: the life of his patient, a patient with particularly big plans.

Working with Dr. Timothy Whelan, medical director of the MUSC Health Lung Transplant Program, Hoffman received his new lung in October of 2019. From the interview process — where Hoffman asked questions to ensure it was the right decision for him — to the operating room, Hoffman felt comfortable and unrushed. He fully trusted that he was in the right hands.

I've been more than happy and pleased with the amount of care and attention that I've gotten; my teams were so supportive and never make me feel stupid for reaching out to them with questions," he says. "It's like a boutique operation. The care is not overwhelmed by people and numbers - it's very specific to the individual and tailored to fit my needs. They've worked with me and my family a lot to really help with just letting me have a normal life.

Progressively Shifting

Every day for the next three months was an uphill climb for Hoffman. But within six months, he could return to work. By that time - April 2020 - the pandemic had a firm grip on the world, and Hoffman was ahead of the game. Vulnerable to bacteria after the transplant, he was instructed to wear a mask and quarantine. "It made my situation feel almost natural," he says.

A pandemic world also meant an easier transition to work since everyone was working remotely. "Staying home and being able to keep some comforts around, that helped a lot," he says.

By the summer, Hoffman felt renewed. Back when he was still in the hospital after the transplant, his wife asked him, "So what do you want to do when you get out of this?" For five years, he had avoided what gave him joy: hiking in the mountains, but that's exactly what gave him the drive to get better. The goal of hiking again inspired him to get in better shape, to feel better, to do better.

Before the summer was over, he was hiking in Table Rock, SC with his family. By October, the one-year milestone, he was rock climbing Looking Glass Rock with a friend.

Hoffman kept getting stronger, hitting the gym late at night to avoid crowds during the pandemic. In December, he and his wife sat down and decided it was time to plot out the ultimate goal: Yosemite's Half Dome. By Christmas, the trip was booked; the whole family, both grandmothers included, would be setting off for California in the spring.

Conquering the Mountain

Over the course of the Yosemite trip, he and his wife hiked over 30 miles with 10,000+ feet of elevation gain. Through residual early spring snow and ice, they reached the top together, but Hoffman would summit the mountain alone, making that final 400-foot ascent the ultimate accomplishment.John Huffman has been a lifelong sufferer of Cystic Fibrosis.

When Dr. Flume saw a video of his longtime patient conquering a mountain, he was proud.

"A big issue for us is trying to help patients manage their disease, but also to live life, to make plans, and so when you get to see things like people graduating from school, having relationships, getting married, raising a family work and having these things, that's what we're striving for," he says. "So when you see something like that video, that's just a home run."

Learn More

To learn more about the lung specialists at MUSC Health’s Transplant Center or to speak to someone, call (843) 792-5097. To learn more about the MUSC Health Cystic Fibrosis Center, call (843) 792-0279 to make an appointment.

About the Author

Advance With MUSC Health

Keywords: Lung Care, Patient Story, Surgery, Transplant