Six Insights from a Lung Transplant Journey
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1. Q. What was your life like when you were first diagnosed with pulmonary fibrosis, and how did the disease affect your daily routine?
A. At the time of my diagnosis in 2014, I had been an associate pastor in several churches around the country. I loved to read, coach my kids’ sports teams, play frisbee golf, and travel. I was serving in a full-time Family Life pastoral role with a church in Charlotte, North Carolina. I do not remember hearing the words “pulmonary fibrosis” ever before until my pulmonologist announced my diagnosis. My wife and I spent the weekend feeling sorry for ourselves, grieving, and researching. We both felt committed to attack the disease by pursuing a life-saving lung transplant.
2. Q. When did a lung transplant become part of the conversation, and what were you feeling as you prepared for that possibility?
A. I was 56 years old and this was the first serious health complication that I ever faced. I wanted to live but didn’t fear dying. Our attitude became, “we are going to pursue every opportunity and take every test to be listed for transplant.” We were parents of five young adult children, and I remember thinking two things: I was glad that I had the disease and not any of them; I wanted to set an example of how to face a life-threatening diagnosis openly and with faith.
3. Q. What do you remember most about receiving the call that donor lungs were available?
A. As I steadily declined in my ability to breathe, I began to use an increasing amount of supplemental oxygen. In the months prior to the transplant, we had a couple of family meetings with our kids and their spouses to discuss all the possibilities, and to create an action plan for when “the call” came. Still, it was an emotional few minutes for my wife and I before we kicked into “checklist gear” and started to work the plan that we had created. Our preparations paid off, as everything went smoothly.
4. Q. What were the biggest challenges following transplant, both physically and emotionally?
A. The post-transplant physical challenges were many and serious. My ability to swallow was compromised when they removed intubation and I had to be tube-fed directly into my stomach for the first three months. Stenosis (narrowing) developed in the airways of my new lungs, which required many bronchoscopies to place stents and then maintain them. I also suffered an air embolism stroke when a peripherally inserted central catheter (PICC) line was removed, but I don’t really “count” that because it saved my life! During the CT scans of my brain afterwards, the doctor also looked at my new lungs and saw a tear developing at a key connection point. If not for the stroke, it would’ve gone unnoticed until too late, but was an easy, immediate fix while I was unconscious. The mental and emotional challenges are even harder than the physical! God’s grace combined with my faith fueled my perseverance through every challenge. I was also supported through an amazing network of family and friends.
5. Q. Now that you are more than 10 years post-transplant, what are you able to do that once felt difficult or impossible?
A. In May of this year, I celebrated 10 years with these new lungs! It has been a humbling journey and yet I am aiming for 10+ more years of traveling and playing with my grandkids. My lungs don’t really limit me in any way, but I was able to only get 80% mobility back to the right side of my body in recovery after the stroke. That limits me more physically than anything else.
6. Q. What would you like people living with pulmonary fibrosis, transplant candidates and their families to know about the journey?
A. When you make the commitment to pursue a lung transplant, go “all in.” Make the commitment and gather your caregivers and supporters who will commit to help … and make you laugh! Be open and honest while staying positive through every struggle. Continue to learn about the disease through all the great resources of the PFF and through a local support group. Every journey with PF is unique.
About the Pulmonary Fibrosis Foundation
At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.
As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.
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