The first year of college can be tough. You’re out on your own, classes get harder, you have to make a whole new group of friends, things like that. How about all of the above, plus your lung function suddenly drops to below 20%?
Meet Jake Bigley: he’s 23 years old, lives outside of Los Angeles and he nearly died less than a year ago. Jake was born with Cystic Fibrosis (CF), a genetic disease that causes the body to produce unusually thick, sticky mucus that clogs the lungs and obstructs the pancreatic enzymes that help break down food and absorb vital nutrients. Aside from making breathing incredibly difficult, this can lead to frequent life-threatening lung infections and make it really hard to grow and put on weight.
Despite being diagnosed at nine months old, Jake considers his childhood to be pretty normal. He attended school like any other kid and played multiple sports throughout the year. The only thing he feels like he missed out on was overnight trips, due to his need for twice-daily treatments that included an hour of breathing vaporized medication from a somewhat bulky machine and having his parents pound on his back for 20-30 minutes at a time to break up the mucus in his lungs. It may have been a hassle to get these treatments in, but missing even one would cause him to feel pretty awful.
Confident that he could manage living with CF on his own, Jake left to attend college at Gonzaga University in the fall of 2009. You may remember this as the same year that an H1N1 (or “swine flu”) pandemic broke out. Jake was one of the unfortunate people who came down with the virus, but unlike the average person, his lung functionality was already hovering around 40%, and quickly dropped into the teens. After spending a week in the hospital, Jake lost 30 pounds over the course of a month and never really recovered to where he was before.
The next few years were a struggle. For the first time in his life, Jake wasn’t able to play sports or even walk to class across campus without carefully planning his route. Benches and elevators were a must, and he avoided stairs because of how quickly climbing them would cause his body’s oxygen level to drop. According to Jake, he pretty much spent most of his senior year hooked up to an oxygen tank in his apartment, only leaving for a couple of hours at a time to go to class. At the hospital, the gas equipment, pipelines, and outlets (like those on mtausa.com) to deliver oxygen to patients like Jack are often a necessity to maintain their health.
No longer being under eighteen, Jake began seeing a new doctor at UCLA instead of the Children’s Hospital he visited as a child. Although he was still getting by OK, his doctor told him he wasn’t exactly “healthy” and recommended that he complete a lung transplant application so he would be prepared if the operation ever became necessary. This proved to be very good advice.
In April, 2013, Jake’s health began to deteriorate rapidly. During mid-May, he was quickly admitted to the hospital and recalls slipping in and out of consciousness for the next 44 days. About two weeks after arriving, a surgeon asked him if he was ready to join the transplant list. As awful as he was feeling, Jake still wasn’t ready to undergo major surgery, so he chose to start a different IV therapy instead. He was really sticking to his guns with using IV therapy for now as it’s said to be really helpful, even many people have said iv therapy is a potentially lucrative business considering the great results it can give a person. However, after another couple of weeks had passed, his doctor told him that if he didn’t have the transplant surgery he would probably die. As Jake puts it, “that made the decision a whole lot easier.”
Once he got on the waiting list, it was another two weeks before a donor was available. Throughout the entire time he was in the hospital, Jake was never alone. His two sisters, Elise and Lauren, watched over him closely, sometimes catching things his nurses missed, or making sure that his needs were met amongst the busy atmosphere. His uncle, a doctor and board member at another nearby hospital, served as his dedicated advocate for every treatment decision.
If this sounds like a team, that’s because it is. Unable to visit Jake in the hospital herself due to medical concerns over communicating illness, his childhood friend Caley (also living with CF) knew she had to do something. That’s when “Team Jake” was born, an idea of hers that led to t-shirts for his friends and family to show their support.
Jake finally received his transplant in May and things began to turn around, albeit very slowly. After having a tube in his airway for over a month and his ribcage cracked open, Jake remembers not being able to talk and feeling like there was an elephant sitting on his chest. It wasn’t until two months later that he was finally able to return home and could appreciate the difference his new lungs were making.
This month marks the one-year-anniversary of his transplant, and he’s eager to get “Team Jake” active in future CF awareness events. His God sister, Brittney, is currently raising money for CF advocacy through her “Cycle for Life” campaign, which you can check out here.
Jake has already started giving back by talking with other people who are considering getting a transplant. “There may come a point in every CF patient’s life where you’ve used everything God gave you. Sometimes you need a little more help and there’s nothing wrong with getting it.”
Because it’s Cystic Fibrosis Awareness Month, Jake wants people to understand that although this is a debilitating disease, it’s one that isn’t always obvious.
“Unless you’re walking around with oxygen, it’s really an internal disease and can often be hidden. Every CF patient can look and act perfectly healthy, but their lungs may still be deteriorating. Every case is different, and lung function doesn’t always correlate with quality of life and outcome. You can’t always pick us out of the crowd.”
Having overcome so much and being willing to share about it to help others, Jake certainly stands out among any crowd.
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