My Breath, Made Possible by Another: Lung Transplants and Pulmonary Fibrosis
According to the Organ Procurement and Transplantation Network, a patient in need of a life-saving organ transplant is added to the national waiting list every 9 minutes*. Of the more than 120,000 individuals on the organ waiting list, there are only 1,000 lung transplant procedures performed for pulmonary fibrosis (PF) patients each year — I am one such recipient.
This National Donor Day (Feb. 14), I’m here to share my lung transplant journey and acknowledge the importance of donors who help heal and save lives each and every day. And as a Pulmonary Fibrosis Foundation (PFF) Ambassador, it’s critical that I educate others about PF, with a keen eye on the future of treatment and, ultimately, a cure.
My journey to a double lung transplant
I’ve always been an active person and several years ago began cycling and competing in triathlons. In 2015, I developed a persistent cough that was uncontrollable every time I rode my bike. My training times kept getting slower and every day became a challenge with increasing coughing, fatigue and frustration. I underwent testing and was treated for cough for two years. Then, in August of 2017, I nearly completed a life goal — the Wisconsin Ironman. But at mile 132, I was pulled off the course because I didn’t make it to the check point in time. Just two weeks later, while in the best shape of my life, I was diagnosed with idiopathic pulmonary fibrosis (IPF) — a debilitating lung disease for which there is no cure. After three trying years of battling this disease that causes progressive scarring in the lungs, I received a double lung transplant. Most people living with PF will never receive a transplant, and many are given 3 to 5 years to live. However, thanks to my lung donor, I was given the priceless gift of a second chance at life. Today, I’m feeling more like my active self, participating in activities like the annual PFF Walk and my son’s annual PF awareness bike ride.
Treatment options offer hope
Despite its severity, 86% of Americans** do not know the symptoms of PF, which often mimic those of common respiratory illnesses — a dry, chronic cough, fatigue and shortness of breath. As such, PF diagnosis often comes in its later, harder-to-treat stages. While the road to diagnosis can be long, there are treatment options that offer hope for patients. Before lung transplantation, supportive care treatments, such as supplemental oxygen and pulmonary rehabilitation, can mitigate symptoms, while antifibrotic medications can slow down disease progression by about 50%.
As my condition progressed, I qualified to be assessed for lung transplant eligibility. To join the lung transplant waiting list, the PFF notes that patients:
• be in otherwise good physical condition including healthy weight,
• have a realistic understanding of the financial and emotional implications of a lung transplant,
• have a very supportive social support system in place,
Upon acceptance to the transplant list, patients are triaged based on: a) the severity of the pulmonary disease and its progression, and b) finding an appropriate donor match. In the meantime, it is crucial for patients to keep a positive state-of-mind, surround themselves with a positive support system and take advantage of PFF resources, including ongoing webinars on trending topics, such as symptom management, and patient education materials, like oxygen basics and conversation guides.
I also encourage patients to visit the PFF’s YouTube page to tune into educational videos regarding treatment options and lung transplants.
The PF community joins forces to find a cure
There’s no doubt about it — patients of late-stage PF are not alone in their need for a lung transplant. Other such patient populations include COPD, cystic fibrosis and pulmonary hypertension. This demand, compounded with the existing lack of lung transplant supply, further inspires our community to find a cure for PF. We’re not alone in this goal — 1 in 2 Americans (49%)** say that finding a cure for PF is very important.
Spearheading such research is the PFF Registry, the first nationwide database supporting researchers in diagnosing, treating and potentially curing PF. To date, the Registry has collected over 3,600 patient-years of data from 2,000 Registry participants, pinpointing crucial data on genetic markers, symptom manifestation and treatment efficacy. By forging partnerships with medical and clinical communities, we will continue to trailblaze research efforts and reach a day when we find a cure.
Awareness starts with you
I realize that I am one of the lucky few who received a lung transplant — and for that I am incredibly grateful. As one of 32 individuals who comprise the PFF Ambassador Program, a team of volunteers including patients, caregivers, lung transplant recipients and healthcare providers, it is my honor to champion the PFF’s breadth of resources to patients and promote disease awareness to the greater public. As such, I encourage you to pinpoint PF risk factors, symptoms and more by visiting AboutPF.org.
On behalf of the PFF, I’d like to again offer our sincerest thanks and gratitude to lung donors. Your donation makes our advocacy and research possible — a life-saving contribution I am reminded of with every breath I take. Thank you.
*Organ Procurement and Transplantation Network: https://optn.transplant.hrsa.gov/
**PFF National Consumer Survey Report: https://www.pulmonaryfibrosis.org/docs/default-source/marketing-brochures/pff-national-consumer-survey-report---for-review-updated-2-19-2020.pdf?sfvrsn=c479c8d_0
***PFF Website — Pulmonary Fibrosis Treatment: https://www.pulmonaryfibrosis.org/life-with-pf/pulmonary-fibrosis-treatment-options#:~:text=Lung%20transplantation%20is%20an%20important,will%20never%20receive%20a%20transplant.