Amazing Things: Tim Sweeney

Diagnosed with cystic fibrosis as a child, the personal trainer never could have imagined needing a double lung transplant 25 years later.

Amazing Patient Tim Sweeney working out in the gym
Amazing Patient Tim Sweeney working out in the gym

The way Tim Sweeney imagined it, his 2006 engagement meant he’d be spending long weekends with his fiancée, visiting potential reception locations, sampling over-the-top cake and dessert table selections and planning a killer bachelor party with his high school and college buddies.

Instead, the then 29-year-old found himself unable to cross the street without losing his breath.

“My fiancée listened to my chest and thought I sounded like a smoker,” he says.

Tim, now 39, was experiencing symptoms of cystic fibrosis, a genetic disease that causes mucus to become thick and sticky, clogging the lungs. Diagnosed when he was a toddler, he’d had a normal childhood growing up in Connecticut — never missing a day of school, running around with his friends and regularly playing racquetball. But by his late 20s he had such a hard time breathing that he spent an hour or two at a time, twice a day, hooked up to machines to clear fluid from his lungs. Every morning and evening, he would be stuck in a chair, wearing a vibrating mechanical vest to clear mucus.

“If I had to meet a client at the gym for a 5 a.m. session,” he says of his role as a personal trainer, “I’d be up at 3 a.m. doing a breathing treatment, and then I’d do it again at night.”

It got worse. In January 2009, Tim, now newly married with a young baby, got devastating news. His doctor, who was regularly monitoring Tim’s breathing capacity, told him he needed a double lung transplant. After breaking the news to his family, a shocked Tim spent anxious weeks researching East Coast hospitals and their transplant success rates. He made an appointment with Dr. Jessie Wilt, then the associate medical director of the Adult Lung Transplant Program at NewYork-Presbyterian/Columbia University Medical Center.

That first meeting in March 2009 set the wheels in motion for Tim to get on the transplant waiting list.

“There’s an order of priority with transplants that’s based on need,” he says. “You have to be sick, but not so sick you would pass away right after getting an organ.”

Over the next several months, Tim commuted into New York City every week from his home in Fairfield, Connecticut, for testing to determine his lung allocation score, a numerical value used to determine priority for who receives lungs for transplant. This consisted of “every breathing test you can imagine,” he says, as well as lung X-rays and MRIs, plus regular blood tests to check oxygen levels. He also had to take classes on nutrition and psychology.

Tim was put on the transplant waiting list at the end of September 2009 and went home to await a match. He had a permanent oxygen tank in his basement and a portable one he could wear in a backpack, but he felt self-conscious using it in public, especially at the gym. He’d use the tank in the morning, but by the time he got home, he would be blue, feeling as if he had breathed through a straw all day, and was very tired as a result.

By mid-October, Tim returned to NewYork-Presbyterian Columbia University Irving Medical Center because his lung capacity had diminished to the point where he was unable to breathe without near-constant supplemental oxygen.

“If I had to meet a client for a 5 a.m. session, I’d be up at 3 a.m. doing a breathing treatment, and then I’d do it again at night.”

— Tim Sweeney

His transplant surgeon, Dr. Joshua Sonett, chief of general thoracic surgery and director of the Price Family Center for Comprehensive Chest Care at NewYork-Presbyterian / Columbia University Medical Center, encouraged Tim to be as healthy as he could be leading up to the surgery.

“He said to me, if you can walk into the surgery, you can walk out. And I thought, I’m going to run!” Tim walked laps around the hospital floor as he waited, tethered to a portable oxygen machine.

A donor match, a woman with the same size lungs and blood type as Tim’s, was found the next month. During the four-hour surgery, Dr. Sonett used the bilateral sequential technique. First, he made two small incisions below Tim’s pectoral muscles. Then he deflated and removed one of Tim’s lungs, using the other old lung to keep him alive while he implanted the new lung. Then, using the new lung to keep Tim alive, he removed and replaced the second lung. “Like something old, something new,” says Tim.

When he woke up, Tim’s first thought was the realization that he’d received female lungs. His second thought was that he couldn’t believe how good he felt.

“I woke up and there were no tubes, no oxygen,” he recalls. “When I breathed in, it felt like a jet engine. It was so solid and powerful. When I sneezed, it was loud, which hadn’t happened in years!”

Most patients take about six weeks to recover from a lung transplant. Tim was released in six days. This was partly because of his superb level of fitness, as well as Dr. Sonett’s technique, which avoided breaking his sternum. “My recovery was off the charts,” he says. Within 24 hours after surgery, he was walking up and down the hospital’s halls and even asked for a pair of dumbbells. The hospital staff obliged.

While Tim was in the recovery room, Dr. Sonett casually mentioned he had recently run the New York City Marathon — and asked Tim if he wanted to run it together the following November.

“Many times, offering things like that is a metaphor so people know they are going to be better,” says Dr. Sonett. “It’s kind of like, ‘I’ll see you in five years.’ But he basically said, ‘I am not only going to get better, I am truly going to run that marathon with you.’”

And they did. Tim was running a mile just a month after his surgery and finished a half-marathon in the summer of 2010 while he trained for the marathon that November. Tim and Dr. Sonett ran the race together, finishing in about six hours. As they approached the finish line, Tim turned to his doctor and joked, “Are you going to let me win?” Dr. Sonett replied, “No, we are going to cross together.”

Today, Tim and his wife have two sons, ages 8 and 4. He spends his weekends coaching a T-ball team, enjoying backyard barbecues and taking his kids to the playground. The family often travels to California to visit his in-laws, always stopping at Disneyland. Tim sounds ecstatic about his life and says he feels amazing, even though there are challenges that come with transplanted lungs. He has to take anti-rejection drugs for the rest of his life and has side effects like water retention, muscle loss and type 1 diabetes, for which he must take daily insulin.

“Even with the side effects, saying I feel a million times better after the transplant doesn’t begin to describe it,” he says. “I don’t have to pump my chest anymore. I don’t get out of breath.”

Tim still works as a personal trainer but says his transplant has completely changed the way he approaches fitness. “Before, I’d be focused on getting my clients to look good in jeans,” he says, “but now I train people differently. It’s all about getting and staying healthy.”

His training approach incorporates biomarkers, or health indicators, such as cholesterol, blood pressure and family history of diseases. For example, he’ll sit down with a client to look at his or her blood results for signs of vitamin D deficiency or high cholesterol levels and use that as a starting point to develop a fitness plan and recommended diet.

“Sustained health must come from within,” he explains. “Are you here to lose 10 pounds or get your blood pressure down? My job as a personal trainer is to understand where someone is coming from and what their true health goals are.”

Tim is so passionate about a biomarker approach to fitness that he and Dr. Sonett have written a book about it together.

“I feel there’s a reason I’m here and didn’t die,” he says. “I was truly given a second chance. The worst thing you can do is waste it.”

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