Tristen's story: Finally breathing with ease

July 13, 2018
Tristen's story: Finally breathing with ease | Texas Children's Hospital
Images courtesy of Tristen Brown and Sharon Varley

I was diagnosed with cystic fibrosis, a genetic disorder, when I was born in 2001. I was like most kids growing up – active and filled with energy. I was pretty healthy throughout most of my adolescence, too. When time passed, I was hospitalized frequently from repeated cystic fibrosis exacerbations. In early 2016, my health started to decline when I was a freshman in high school. I had to stop attending public school and start online school once I realized I was falling behind in my schoolwork due to the hospitalizations. This allowed me to do schoolwork when I wasn’t feeling well, and provided enough flexibility for me to rest and receive breathing treatments.

During my sophomore year, I faced a major turning point in my life – this is when my health really, really started to decline. I was hospitalized two weeks out of each month to receive aggressive antibiotic and respiratory treatments. I was depending on 4 liters of oxygen at all times, and had to sleep with a BiPAP to keep my lungs open. I also had a g-tube for continuous feeding, since my appetite was nonexistent. My pulmonary function test results were the lowest they had ever been with my FEV1 at 17 percent, and doctors told us the only form of treatment left at that point was a double-lung transplant.

My parents always considered the possibility of a double-lung transplant, but hoped I would never actually need it. This was a huge, emotional shock for my family and friends. When we heard, I had so many thoughts and questions racing through my mind. In early 2017, I was hospitalized for five weeks at Minneapolis Children’s Hospital, and this is where the process for finding a hospital to take on my transplant began.

The first option was an adult program at the University of Minnesota Health. I was rejected – not because I wasn’t an adult, but because of the specific type of bacteria growing in my lungs. We were discouraged, but still had hope. My doctors placed calls to several different hospitals, including Texas Children’s Hospital. When we heard our options, my family immediately hoped for Texas Children’s because we knew of their outstanding pediatric transplant program. When I was finally discharged from Minneapolis Children’s, my main focuses became gaining weight and staying as healthy as possible.

We traveled to Houston in May 2017 for my transplant evaluation, which included many different appointments – physician meetings, lab work, body scans, X-rays, respiratory function tests, not to mention a physical and mental exam. The four-day-long process was very stressful on my body; I was exhausted at the end of each day. When we finished the evaluation, we headed back home to Wisconsin with a 21-hour road trip ahead of us. We could only travel by car, as planes were too dangerous due to the high levels of carbon dioxide my lungs retained. Once we were home, we waited patiently for a call with a decision from Texas Children’s.

On Aug. 4, 2017, we got a call with an acceptance into Texas Children’s transplant program. We loaded up the van the next week and I headed back to Texas with my mother and father, not knowing how long we’d be there. We soon arrived and stayed at Nora’s Home, a haven for transplant patients and their families. I was officially placed on the UNOS transplant waiting list on Aug. 21, 2017, and was now just waiting for the day we would get the call for my new lungs. To note, the typical wait time for a pediatric lung transplant is four to six months.

Every day feels like an eternity when you’re waiting for new lungs. It’s hard not to be impatient and grouchy, and it’s hard not to think about what could happen if you don’t get the call. I missed my family and friends back home, and I hated feeling so horrible. While we were waiting for “the call,” a typical day for me involved taking medications, receiving respiratory treatments, doing schoolwork, going to doctor’s appointments and physical therapy sessions, and resting.

I started my junior year of high school on Sept. 5, 2017, and it felt like a normal day. I woke up, took my pills, refilled my feeding bag and did my respiratory treatments. After school, I went to the grocery store with my family to grab a few things. We were in the van around 5 p.m. when my pager went off. At this moment, we knew a possible set of lungs were available for me. My mom called the number on the pager and the doctors at Texas Children’s urged us to be at the hospital within 30 minutes. We quickly turned the car around and rushed back to Nora’s Home.

We got there, packed a few things and immediately left for the hospital. When we arrived at Texas Children’s, we were quickly admitted to a hospital room for some pre-transplant care. Our nurse told us the transplant procedure wasn’t scheduled until 4 a.m. on Sept. 6. I couldn’t fall asleep that night – there were too many thoughts running through my mind. When the time came, I hugged and kissed my parents and told them I loved them before being wheeled into the operating room to get prepped for my big moment.

My surgery lasted 11 hours and ended at 3 p.m. I was only in the hospital for two weeks, and my recovery couldn’t have gone better. I felt incredible – like I was able to do anything. I still do. I’m so fortunate that I only had to wait two weeks and one day for my lungs. I’m so thankful for the gift of life. I can finally breathe with ease again.

If you’re interested in learning more about organ donation, or would like to sign up to become an organ donor, click here.

Tristen’s double-lung transplant story was initially featured in the Eau Claire Leader-Telegram, click here to view.

Post by:

Tristen Brown, patient