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Cystic Fibrosis: Grant's Story

I was diagnosed with cystic fibrosis (CF) when I was 7 months old. I am now 26. People with CF produce an abnormally thick mucus that clogs the respiratory and digestive systems. This congestion can lead to serious and frequent lung infections. Also, the body doesn't produce the natural enzymes needed for digestion of food and absorption of nutrients.

All these things can cause CF to take quite a toll on a person's energy level.

Luckily, I take enzymes by mouth so I can digest everything I eat. But I still had a very poor appetite as a kid and teen. I liked to eat; I just didn't eat much. So to get the right amount of calories per day, I had a feeding tube placed on top of my skin and attached to my stomach. Through this tube, I received a high-calorie, nutritional liquid during the night while I slept.

By the time I was 13, my cystic fibrosis was getting progressively worse. I got more and more lung infections and was in the hospital more often. I always fought back, recovered, and got back to my "normal" life. But eventually, the constant setbacks took their toll. My hospitalizations became more frequent, and I missed more days of school.

Not Your Normal High-School Ups and Downs

Quite frankly, I was nervous about going into high school. Not only was I entering a new school and environment, I also knew my health was slowly getting worse. It was hard for me to do simple things, even carry books and walk to class. My teachers and I came up with ways to get around these problems — for example, I kept a book in each of my classrooms and one for every subject at home. And teachers would let me get out of class early to allow me time to walk to my next class.

One of the best things to do for CF is to get active. Physical activities such as basketball, tennis, or running get the lungs working hard and can help clear extra mucus. Unfortunately, one of the last things I felt like doing in high school was running or playing a sport. Now that I exercise more and feel the benefits, I wish I had pushed myself to exercise more. It probably would have helped.

In the 9th grade I walked by the yearbook staffroom every day. They always looked like they were having fun. So in 10th grade, I applied to be on the staff and was accepted. It turned out to be the best thing for me during high school.

Everybody was so cool and had a great attitude toward my CF (mostly because I did, too). When I was having a "bad" day, they understood and gave me assistance if I needed it. The yearbook staff was my support group and just knowing they had my back helped me get through a lot of tough times.

It's wonderful to have friends around when you're feeling sick or even a little scared. I made incredible friends in school, often through getting involved in clubs, and I still keep in touch with many of them today. A few of them even told me they learned a lot from me about being positive and strong.

When I was 15, my doctor told me that I needed to take an oxygen tank around with me. This was pretty devastating; a sign that things were really getting bad. It was embarrassing having to wear the tubing around my nose all day and lug the tank around in my backpack.

In the beginning, I'd only wear it a little bit at school, mostly when I felt really short of breath. But I discovered that I needed it almost the entire time. My friends on the yearbook staff always offered to pay me for a couple of sniffs! I should have taken them up on that!

After a while, the oxygen became a part of me and I hardly noticed that I had it on most of the time (except when it irritated my upper lip)! It took a while, but I came to the realization that the oxygen wasn't an option, but a requirement. After I came to terms with it, I realized how much it helped me.

By my junior year, my CF was getting pretty bad and my stamina was even worse. My doctors recommended that I only stay at school for half a day and do my other subjects through home schooling. I was pretty psyched to get to leave school early every day, but found I missed out on a lot. It gave me more time to rest, eat, and do all of my CF treatments. But I missed my time with my friends.

By the time I was a senior, I was told I needed to stay home from school and do home-schooling every day. This bummed me out. Your senior year is supposed to be your best year in your entire school career. I was going to be home for mine. But I really had no choice. I just didn't have the stamina to go to school. I missed out on yearbook, dating, homecoming, prom, and all the other senior-year fun. I had to concentrate on taking care of myself as best I could.

A Double-Lung Transplant

When I was 16, I was told that I would need a double-lung transplant if I wanted to survive. It would be a huge operation. But I knew that I wanted it because I wasn't done living. I had more to do and this was going to give me the power to do it.

In July 1998, I went to be evaluated to see if I'd be a good candidate for the transplant. I had to go through 2 days of medical tests, most of them exhausting. They included blood tests, X-rays, lung tests, scans, and even a psychiatric exam (to make sure I could handle the transplant emotionally).

That October, I was accepted as a candidate for the double-lung transplant. I was given a beeper so they could contact me and I could get to the hospital quickly if lungs became available for me. Unfortunately, my wait went on for almost 2 years. I had to take care of myself during this time because the better condition I was in for surgery, the better the outcome would be.

One night in May 2000, we got the call to come to the hospital. I was in surgery shortly after midnight. I woke up 8 hours later and my long recovery began. A combination of physical therapy, following doctor's directions, a good diet, emotional support, and determination helped me recover in about 1½ months.

After my transplant, my doctors wanted me to get up out of bed as soon as possible to speed my recovery. My dad urged me to take short walks around the hospital a few times a day. I didn't want to because it hurt when I walked. But I took his advice and it helped me recover. Soon I was walking faster than him! I came back home on May 30 (25 days after surgery) to walk, without oxygen or assistance, in my high school graduation.

I still have cystic fibrosis, but now it's only in my digestive system. The transplant gave me lungs that do not have CF and never will. After the lung transplant, I was able to take long, deep breaths and had tons more energy and stamina. My appetite went from hardly eating to eating everything. My body needed more fuel now that it was running on all cylinders! My feeding tube was removed about a year after my transplant. I was really glad about that!

Living – Really Living

It's been more than 5 years since my double-lung transplant and I have accomplished so much. I went to college at the University of North Florida, majored in marketing, and am working for my family's nonprofit foundation, The Big Fun Foundation.

I work out 5-6 times a week at the gym on a wide range of exercise equipment, and I vary what I do every day for maximum benefit. I ran in my first 5K race a few years ago. When I was on oxygen and practically bedridden as a teenager, I never would have imagined I would be so active! The mix of cardio and weight training has, I believe, contributed to my good health nowadays.

I am responsible for 95% of my care now. There's a lot to do! I still take medications — in fact I take more pills now (about 30 a day!) than I had to take before my transplant. Keeping up with numerous appointments, taking my medicines on time, and being on the lookout for any changes in the way I feel make for a busy schedule. But taking charge of myself gives me a sense of pride when I see how far I've come after 26 years of ups and downs with cystic fibrosis.

Sure, I've had some setbacks, including a couple of hospitalizations. But I apply the same attitude I always have: Think positive, do what's needed to get better, and move on.

Reviewed by: Raj Padman, MD
Date reviewed: September 2008
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