Currently, there are more than 106,000 people in the United States on the organ transplant waiting list, with more than 1,000 of those awaiting a lung transplant*.
National Donor Day (Feb. 14) was created more than 20 years ago to focus on five points of life: organs, tissues, marrow, platelets, and blood. Many groups use this day to sponsor blood and marrow drives and organ/tissue donation sign-up events.
As a two-time lung transplant recipient now living with lungs from two donors, I am honored to commemorate National Donor Day to share my story, help raise awareness of the life-saving impact that being an organ donor has for patients like me, and hopefully be part of the journey to finding a cure for pulmonary fibrosis (PF).
My PF and Transplant Story
In July 2009 while on a hiking trip in Colorado with my wife and friends, I found myself struggling to keep up with our group. They passed me on the trail as they came down the mountain when I hadn’t yet reached the top. I jokingly told them I thought they were trying to kill me, but in all honesty, this trip probably saved my life because I went straight to the doctor when I returned home. It took some time, but the following year I was diagnosed with idiopathic pulmonary fibrosis (IPF)—a progressive lung disease I’d never heard of, and a disease with no known cause or cure. For the next few years, I continued my doctors’ visits and necessary testing, and was told to choose a transplant hospital in preparation for the possibility that a lung transplant could be the life-saving treatment option I needed.
In January 2013, I spent two weeks undergoing a pre-transplant evaluation at Temple University Hospital in Philadelphia. Initially, I was deferred from the transplant list because I was deemed too healthy. I ended up being put on the list in June when my health declined more quickly than anticipated. Then, at around 7:15 a.m. on September 22, the call we had been waiting for arrived—they had a lung and we needed to get to the hospital as soon as possible. By 11 a.m., I was on the gurney and wheeled into the operating room. I was back home recovering eight days later, going to bed each night thanking God for this gift and my donor’s family for allowing his organs—especially his lungs—to be donated so others could have a second chance at life.
I began writing to my donor family every six months or so to let them know how I was doing and that the gift I received was still healthy and providing me with a life I may not have been able to have. In August 2017, things changed. Up until then, I had never received a response, but I kept writing in hopes that my letter would someday be answered. This letter was the one—they reached out and wanted to meet! My wife and I were finally able to arrange a meeting with the family of my donor, Juan. After nearly five years, I finally knew my donor’s name.
In November 2017, we had the opportunity to meet Juan’s mother, wife, daughter, and sister. It was a very emotional two hours for everyone. We learned about each other’s families and formed a bond that I believe will last forever.
My story took a scary turn in 2019 when my native lung began to fail. I was listed for transplant once again in May 2020 amid the COVID-19 pandemic. I waited 465 days for the call telling me to get to Temple Hospital as soon as possible. When it finally came on August 9, 2021, I was flooded with the same emotions I had with my first transplant – excitement that what I had been waiting for was close at hand; apprehension about what I was about to face; and sadness over the knowledge that another family was grieving at the very same time.
Lung Transplants Save Lives
Because awareness of pulmonary fibrosis (PF) remains low, it is difficult to diagnose and not often detected until the later, harder to treat stages. Currently, the only curative treatment available to patients with PF is a lung transplant. Studies demonstrate that lung transplantation is associated with a significant improvement in quality of life.
However, before lung transplantation, there are a variety of treatments that can help, such as supplemental oxygen and pulmonary rehabilitation, which can mitigate symptoms, or antifibrotic medications, which can slow down disease progression by about 50%.
Another key factor to successful treatment is educating yourself about the disease and surrounding yourself with a strong support system. I joined the Pulmonary Fibrosis Foundation (PFF) Ambassador Program to do just that—to help drive awareness of PF, including its symptoms and treatment options, and educate others on all the wonderful resources the PFF offers. Their numerous resources helped me through all stages of my PF and transplant journey, from learning how to manage symptoms, to educational materials specific to Preparing for a Lung Transplant, and others that prepared me for Life After Lung Transplant. To learn more about lung transplantation and other treatment options for PF which can improve quality of life, click here. The PFF’s YouTube page also features educational videos regarding lung transplants and other success stories like mine.
For more information about PF symptoms and risk factors, visit www.AboutPF.org.
How to Take Action on National Donor Day and Every Day
You may be asking yourself what you can do to show your commitment to PF awareness and the PFF mission. Becoming an organ donor is an easy, impactful way to give back. Just one donor can provide life-saving organs to as many as eight people** and give them the invaluable gift of life, just like Juan did for me. To learn more about joining the organ donation program, visit https://www.organdonor.gov/.
*https://optn.transplant.hrsa.gov/data/
** https://www.organdonor.gov/sign-up
About the Creator
Jim Carns
I am a pulmonary fibrosis (PF) patient advocate, lung transplant recipient, and ambassador for the Pulmonary Fibrosis Foundation (PFF). I'm here to share my story and raise awareness of PF.
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