Winter Garden resident fights cystic fibrosis, undergoes second lung transplant

When Winter Garden resident Brent Snyder was diagnosed with cystic fibrosis at 6 months old, doctors told his mom he wouldn’t live to see his teen years.

Today, Brent is 30 years old and has survived two lung transplants.

To put that in perspective, WebMD states that more than 80% of people survive at least one year after a lung transplant. Three years post transplant, that number drops to between 55% and 70%. Statistics are even lower for second lung transplants.

But Brent is no stranger to beating the odds.

LIFE WITH CYSTIC FIBROSIS

Cystic fibrosis is an inherited, life-threatening disease that affects the cells responsible for producing mucus, sweat and digestive juices. The chronic disease affects the pancreas, sinuses, intestines and lungs, and it causes the fluids to become thick and sticky. They then block tubes, ducts and passageways, resulting in a thick mucus buildup,

“It’s like, how are you supposed to start a conversation, as an (organ) recipient, thanking someone for them losing somebody? It took me a while to be able to say, ‘Thank you for the amazing gift your loved one (gave).’”— Brent Snyder

“It’s just something I was used to,” Brent said. “When I was younger, I was fine — I was able to play sports up until middle school, when I started getting sick once a year. I’d have a two-week hospital stay or something like that. When I got into high school is when it started getting worse — more frequent hospital stays or at-home IV treatments.”

Treatments included chest wall oscillation, which uses an inflatable vest attached to a machine that makes it vibrate at a high frequency. The idea is for the vest to vibrate the chest to loosen and thin mucus. Then there were the breathing treatments, antibiotics and IVs.

Brent’s condition began to worsen when he turned 20 and began working as a cook at a nearby restaurant. He began having trouble breathing and got too sick to work. By age 23, he was on disability and oxygen.

“It went from not needing (oxygen) to not being able to do anything without it,” he said.

The disease affected his family and friends, too. His sister, Katie, sometimes would act as his nurse and change or flush his IVs. Brent’s best friends would stay the night with him at the hospital, and one Christmas, they celebrated the holiday there with him.

His mom, Cassie Snyder, said there are only certain medications that can treat the bacteria people with CF get from the infections. Because he was on antibiotics for so long, his body built up a resistance to them.

“The infection basically took over, and nothing was working to help with it,” Cassie said. “The lung functions dropped down to 30%. That’s when they said, ‘You need to start the evaluation process (for a transplant).’ He (was) evaluated at Mayo Clinic in Jacksonville first, and they said he wasn’t sick enough to list yet. Then the program here at AdventHealth near Rollins started and … they said, ‘I don’t know why you’re not listed,’ because by then, I think he was down to 16% lung function.”

THE GIFT OF LIFE

Brent was immediately listed and two months later got the phone call that would give him his new set of lungs. The lungs were those of U.S. Army Spc. Robert “Brett” Manuel, who was killed in a car crash.

“I just wanted it over with, because I was tired of not being able to breathe,” Brent said. “I was at the point where I wanted either the transplant to come or I just wanted to go in my sleep, because I was tired of dealing with what I was dealing with.”

The first time around, Brent was in and out of the hospital in 11 days. His quick recovery was a positive sign, and that first transplant gave him another six years of life he otherwise might not have had. After a little while, he was able to write to his donor’s family.

“It’s like, how are you supposed to start a conversation, as a recipient, thanking someone for them losing somebody?” Brent said. “It took me a while to be able to say, ‘Thank you for the amazing gift your loved one (gave).’”

The Snyders developed an amazing relationship with Brett Manuel’s family, which continues to this day.

“Now it’s like you can’t imagine not ever knowing them, because they’ve been a huge part of our lives now since he met them,” Katie said.

Anytime someone receives an organ transplant, rejection is a concern. Transplant recipients are on immune suppressants for life, but rejection varies from person to person. It could happen the day after or 30 years post-transplant.

Additionally, transplants don’t cure CF. Rather, the new lungs aren’t subject to reinfection by CF. Brent also has to take pills to help him digest his food. And because he is on immune suppressants and breathing in airborne bacteria, he must be diligent about not getting sick.

A SECOND WIND

In October, Brent found out his body had begun rejecting his lungs — six years post-transplant. But he didn’t start feeling the effects of rejection until December, when breathing became harder and he knew his lung function was decreasing.

 Although he went through a treatment regimen to try to stop the rejection — steroid and chemo treatments, as well as plasmapheresis — nothing worked. His lung function dropped from 92% to 32% in two months and kept dropping. It was time for another new set of lungs.

“As a parent, it’s just hard to see him have to go through that stuff and you can’t take it away,” Cassie said. “It’s hard to see him have to go through all that stuff his whole life.”

Brent only had to wait a month this second time, and he received his second lung transplant in early April. The recovery process this time, however, wasn’t as smooth. He suffered from painful back spasms, and when he got his chest drainage tubes removed a pulmonary artery was ruptured, causing him to code and sending him into life-saving surgery.

Although he came through it all, Brent unfortunately already is being treated for signs of rejection again. He was in the hospital for more than two weeks in May receiving plasmapheresis, chemo and IV treatments for it, and he won’t know until next week whether the treatments are working. But he views the fact that he’s still alive — compared to where he was in 2012 — as a blessing in itself.

“After my first transplant my outlook was very grim … I was in school during that time for my associate’s degree and didn’t really have any goals for the future, because I didn’t know if I was going to be here,” he said. “After a year or two, I stopped thinking that way and letting things bother me. I have more of a carefree attitude — if it’s gonna happen, it’s gonna happen. I got an extra six years from what I was supposed to have, so how can I complain about that?”