"CF may be a part of you, but do not let it define you."
The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.

Bryan Pendarvis

Go to Bryan's August 2010 podcast with BEF's Jerry Cahill.

Bryan on His Brother

“Stay positive and love your life.” My brother and I loved that lyric from our favorite band, 311, and it is a motto that I try to live by.

We lost my brother, Shaun, on April 1, 2009, when he developed a serious infection more than a year after his successful lung transplant. He was 27. Shaun has always been my inspiration because he was always so positive, even when he was feeling horrible. Because he was older, when I would have treatments for CF, he would have the “been there, done that” attitude. He would tell me that it wouldn’t be so bad. He would help me be prepared. I can’t imagine going through this without having someone else who really understood what it was all about.

Bryan's Story

I’m 21 years old, and I’m a senior at Southeastern Louisiana University in Hammond. I’m majoring in biology, and my plan is to go to graduate school and study microbiology; probably, I’d like to work in a microbiology lab. The way I look at it, CF allows a bacterium, Pseudomonas, to grow in your lungs, and one of the things you can research as a microbiologist is which antibiotics kill bacteria.

I have career goals, a great family, lots of friends, and a long-time girlfriend. I’m staying positive.

Bryan on CF and Diabetes

But it hasn’t always been easy. Early in my college career, I wasn’t feeling well. I was exhausted all the time. I would come home from class, and I had no energy to do anything. I wasn’t hungry, and I was losing weight. I would stare at a textbook, and the information just wouldn’t come to me. I began to have doubts about whether I could handle college, even though I was class valedictorian in high school. 

Of course, doctors thought my symptoms were related to the progression of CF. I went for tests, but nothing turned up. Finally, a doctor thought about checking my glucose level — it was close to 600 fasting. It turned out that I had full-blown CF-related diabetes, and that the lack of insulin in my body meant that my body was literally feeding off itself: I could not get energy from food. I’m 6’2” tall, and by the time I was diagnosed, I had dropped to 128 lbs. I was so under-nourished that the doctors wanted to place a feeding tube to supplement my nutrition. 

CF can cause diabetes because it interferes with the operation of the pancreas. Doctors are aware of it, but it has not been well-known in the CF community until recently because many people with CF did not live long enough for the effect to take place. Now that we are living so much longer with CF, diabetes is an issue that more than a few adults will confront.

When I started getting the insulin treatments, I felt better immediately. I had so much energy that I was doing twice what I’d been able to do before. I’ve regained weight, and I’m doing great now. I’m back to playing intramural softball, and I’ve been working out at the school gym. Being active keeps your lungs clearer, and it’s inspiring to see what people like Jerry Cahill can do in their 50s.

Bryan on Learning Lessons from CF

One of the lessons I took from my experience is that your doctor can’t know everything about your condition. It took two-and-a-half years to diagnose my diabetes, and if I had known more about the symptoms, I might have been able to help identify the problem. Every CF case is different, and each person has different variables. It’s hard for your doctor to know what’s going on if he or she has a hundred or more patients. So if you are knowledgeable, you can improve your care. It’s one of the reasons that I’m interested in microbiology.

I was hospitalized in December 2007 at Tulane University Hospital when my diabetes was diagnosed. My brother Shaun was at University of Alabama in Birmingham at the same time for his lung transplant. We were on some of the same medications during our recoveries, and he did great. His lung function was 110% of capacity — I didn’t even know that was possible, but it was because his body had been accustomed to working with inefficient lungs — and he had more energy than ever. As Shaun’s recovery continued, his creativity burst through in hundreds of paintings. Then, he went on a camping trip and apparently was exposed to something that caused damage to his lungs. We thought it was fairly minor like pneumonia, and he just needed antibiotic therapy. But the pneumonia caused adult respiratory distress syndrome that he could not recover from since he was immune-suppressed from the anti-rejection medications. The Pseudomonas caused his death, ultimately.

Bryan's Mission

With my diabetes under control, I’m trying to raise scholarship money. One particular scholarship program almost requires campaigning on your campus for recognition, and so I have been reaching out to people in ways that I did not do in the past. Before, I didn’t bring attention to having CF because I want to be treated as “normal” by everyone. But the support I have received has been amazing, and it’s great to show people that having CF isn’t the worst thing in the world. 

Also, I’ve been in a trial for a new drug, and it’s phenomenal. It makes your sweat test results come out as normal — like you don’t have CF. It’s not exactly a cure, but it’s the biggest thing in CF treatment. In the next couple of years, I think people with CF will be living far beyond anyone’s expectations. That’s why I’m staying positive and loving my life.

A Fun Fact About Bryan: He loves to work on cars

Favorite Holiday: Halloween

Favorite Food: Steak and sushi

Favorite Activities: Bowling, video games, photography, golf

Favorite Sports to Play: Baseball and football

Favorite Movie: Donnie Darko and Kung Pow

Favorite TV Series: Dexter

Favorite Music: Rock

Favorite Band: 311

Favorite Color: Teal

Nickname: B-Pen

One Word that Describes You: Analytical

Role Model: My brother Shaun

Dream Vacation: The Galapagos

Favorite Words of Wisdom: “Stay positive and love your life”