Sarah Donoughue, 17, lives in Friendswoods, Texas. She shares her transplant journey with the Pulmonary Hypertension Association’s Right Heart Blog for Donate Life Month in April.
By Sarah Donoughue
My pulmonary hypertension (PH) started when I was born. I was born with a diaphragmatic hernia, which is a hole in the diaphragm that caused my PH. Over the course of 15 years, I went through many treatments and was fairly stable until 2018.
That September, I was admitted to the intensive care unit for two weeks due to heart failure. I had surgery to release some pressure on my heart. My pressures were over 200, which shocked my family and me. Normally, someone without PH would have pressures under 20.
After two weeks of IV heart medications, I was stable enough to go home, but I was on bedrest.
My care team brought up the idea of a transplant, but I was terrified. In 2019, I kept getting worse, so I started to think about it.
My family and I decided to go through with the evaluation and see how we felt afterward. I reached out to people who had had transplants and transplant-related groups. I asked myself a lot of hard questions about life with PH vs. life with a transplant.
It took a while to accept death as a possibility and that I would be OK if things went wrong. I became more OK with the idea, and after two months, it was time.
In July 2019, I was officially listed at Texas Children’s Hospital. To my surprise, the call to say there was a match came only two weeks later. I quickly packed my bags, headed to the hospital and anxiously awaited what was to come.
It wasn’t easy by any means, but I did it. I was scared and balled my eyes out. I quickly prepared myself mentally. I was wheeled into the operating room that evening, not knowing if the lungs were a go. After 15 and a half hours and 17 units of blood, I woke up.
I had a breathing tube, four chest tubes, two arterial lines, many IVs, a central line in the neck and countless monitors. Somehow, I felt calm. I was happy to be awake.
Soon after I awoke, my care team took the breathing tube out, and I started using my new lungs. Things went downhill. My oxygen stats dropped fast from the 80s to 70s to 60s. I was intubated and sedated again. A scope showed that my right lung was clogged. After doctors suctioned it out, they let me rest for another day.
I woke up with another breathing tube. This time was different. I knew I would be OK. I no longer had pain on my right side. When doctors took the breathing tube out, I could breathe. I didn’t feel like I was suffocating anymore.
I sat there enjoying every little and deep breath I could make. I was in the hospital 12 days, including six in the ICU.
Transplant life isn’t a walk in the park. I went through countless nights of hot flashes, insomnia, hallucinations and a huge gain in appetite. I had to relearn to walk, talk, cough and breathe.
Coming home was so rewarding, but I needed to get used to this new normal. I had bad drug reactions and lost hair. I did non-stop physical therapy to get my stamina up, and now I take 15 to 20 pills a day. After six months , I developed post-transplant lymphoproliferative disease, a tissue growth on my vocal cords. It caused paralysis to my vocal cords and had to be treated with cancer drugs.
Thankfully I overcame what doctors thought would be impossible. I now have full movement of both vocal cords. But now my stomach is paralyzed because of a laproscopic surgery. I rely on a feeding tube and am learning my new normal.
Yes, transplant life is tough. However, I live, love and thrive at life.
I am blessed to have had my donor’s family reach out to me. My donor, Adrian, was the most selfless person in the world, and I promise to live my life to the fullest for both of us. I would do every single bit again for the chance to know what it’s like to breathe.
Learn how you can get involved for Donate Life Month here.