By Jon Evans | April 22, 2021 at 4:45 PM EDT – Updated April 22 at 8:06 PM
WILMINGTON, N.C. (WECT) – Jacob Venditti’s life has changed dramatically in the past 18 months. If you look at him now, cruising on a skateboard inside an empty cement pool, you wouldn’t know the depths his physical and mental condition reached in 2019, when cystic fibrosis had diminished his lung capacity to 30 percent.
“There was four times when I was admitted to the hospital, with complications between them,” he said during an interview with WECT in December 2019. “I had pneumonia twice. My ankles were swelling up out of nowhere, I couldn’t walk around. That was really scary. Stomach pains that were awful. I was going to emergency room for random things like that. There were moments where I definitely felt like I didn’t want to get out of bed anymore, because what was the point? It was just going to be so difficult to get up and down the stairs. It’s tough when you cough hard as you can all the time. It’s embarrassing at the same time.”
According to the CF Foundation website, “When the protein is not working correctly, it’s unable to help move chloride — a component of salt — to the cell surface. Without the chloride to attract water to the cell surface, the mucus in various organs becomes thick and sticky. In the lungs, the mucus clogs the airways and traps germs, like bacteria, leading to infections, inflammation, respiratory failure, and other complications.”
In 2019, Jacob’s doctor prescribed Trikafta, which had recently received approval from the Food and Drug Administration for treating cystic fibrosis patients 12 and older. In the span of several days, the 26-year-old began to feel improvement in his breathing.
Fast-forward to present day, and after a year-and-a-half of taking Trikafta, the now 27-year-old Jacob is 25 pounds healthier, able to get back on skateboards and surfboards, and is working again, at the 17th Street Surf Shop in Wilmington.
“I get up every morning wanting to do things all day, compared to just be sitting at home not motivated to do anything,” he says. “It gives me a great feeling of accomplishment, having something to do, feeling like I’m worth something again.”
“For him to be able to finally get back to it like he wants to, is amazing,” said Will McEachern, the owner of 17th Street Surf Shop. ‘I couldn’t think of a better person to have here at the shop, helping to spread stuff on to other kids, the younger kids that want to learn and get involved in the sport.”
Jacob still has to be aware not to overdo the physical activity. He needs time to catch his breath after a few skateboard runs now, but he is getting stronger. The Trikafta has him far from the days when he needed an incentive just to get out of bed to start every day.
“It was pretty awful,” he remembers. “I saw my life coming down to an end. I was on the verge of getting a lung transplant. I had a couple conversations with my doctors about putting me on the list. I had almost given up. Now I have no thought of that anymore, because I’ve gotten almost everything back in my life that I could wish for.”
Jacob is now working to organize events and help raise awareness of cystic fibrosis and raise funds for research to help find a cure. His Live Fearlessly Surf Contest is planned for June 5th & 6th in Carolina Beach, and he has the Live Fearlessly Music and Art Show planned for August the Palm Room in Wrightsville Beach. If you’re interested in entering or helping with either event, you can reach out to Jacob at firstname.lastname@example.org.
The FDA agreed in January to review the application to approve Trikafta for treatment of 6-11 year-old cystic fibrosis patients. According to Dr. Scott Donaldson, the Director of the Adult CF Care Center at the University of North Carolina at Chapel Hill, the test data looks as good in the younger children as it does in older people with CF.
“I would anticipate that approval and use of Trikafta in 6-11 year-olds will be able to more fully reverse the milder disease that these young people have, and then to slow or even prevent lung disease progression,” Dr. Donaldson said. “While we can’t say for sure, it isn’t unreasonable to now expect that these children may have normal life spans, will have markedly improved nutrition, and vastly better quality of life.”
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