When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2011, I was 65 and considered myself extremely healthy. I had completed two triathlons the year before and was still working 10- to 12-hour days.

Looking back, the signs were there. I was coughing more, feeling fatigued, and getting winded climbing the stairs to my boss’s office. I lost a lot of weight. But I assumed some of those changes were simply part of getting older.

After my diagnosis was confirmed at National Jewish Health in Denver, I did what many people do: I searched the internet. I remember thinking, How can this be happening? I just did two triathlons. I had a moment when I wondered whether I would live long enough to see my grandson graduate from high school. He was only in middle school at the time.

I have only one grandson who I have been taking on tours of Europe since he was 7 and the thought of not seeing him grow up was devastating to me. 

But I decided not to dwell on what might happen and I was determined to see him reach high school. There were still too many things I wanted to do.

Considering transplant

So, I needed to figure out my plan. Over the next several years, I saw my pulmonologist regularly. Eventually, I began using supplemental oxygen at night, and my doctor asked if I wanted to be placed on the lung transplant list.

At first, I said no because I did not feel that I was sick enough and thought I could manage my symptoms. But as the question continued to come up, I began learning more about the medical evaluation process, the requirements of having a 24/7 caregiver, and the restrictions following a transplant.

I live in New Mexico, where there is no lung transplant center, so I would have needed to travel out of state for evaluation, surgery, and follow-up care. I also learned how much support is required before and after transplant, including having a reliable caregiver and making frequent trips back to the transplant center.

For me, those practical realities mattered.

Although I live alone, it is not as if I do not have support when I need it. I just do not have someone around me 24 hours a day. I have two sons, a wonderful daughter-in-law, and a strong circle of friends. I am fortunate to have people who would support me if I made the decision to transplant. But they also have jobs, families, and lives of their own.

I had to ask myself whether I wanted to take on the transplant process and ask someone else to make that commitment with me. Ultimately, I decided I did not want to burden others when I was not convinced that a transplant would improve my quality of life. For me, the cons seemed to outweigh the pros.

What I learned from others

My decision was also shaped by years of facilitating a pulmonary fibrosis support group.

I have known people who received lung transplants and continued to need significant support afterward and others who have done well after transplant. Transplant can offer an important opportunity, but recovery and long-term care can still involve medications, infections, complications, and frequent visits to a transplant center.

One member of our group, Catherine, stayed with me. We were about the same age and often talked about transplant as her disease progressed.

Catherine decided she did not want a transplant and was not at all conflicted by her decision. After she died, I spoke with her son, who was a surgeon. He told me he supported her decision because he felt his mother had made it based on sound reasoning. He also would have supported her if she had chosen transplantation.

That conversation reinforced something I had come to believe strongly in, which is that this is an intensely personal decision. Family and friends may offer their advice, but it is ultimately your decision. What matters is having the information and support to make the choice that is right for you.

Looking at the whole picture

My decision might have been different if my circumstances were different.

If I had been younger, had severe symptoms, or had young children who depended on me, I might have looked at transplant differently. For someone else, those same considerations may make pursuing a transplant feel absolutely right, and the prospect of five or more additional years would be most appealing.

Age, overall health, family responsibilities, support systems, quality of life, and personal goals can all be part of the decision.

Today, I am 80 years old, and I am grateful for the life I am living. I use oxygen at night and only occasionally when I am engaged in more physical activity. 

That grandson I once worried I might not see finish high school? He graduated from college, started his career, and is getting married. I plan to be there.

Living with IPF and pulmonary arterial hypertension (PAH) has required adjustments. I use oxygen when I need it and plan ahead, especially when traveling. But I have continued volunteering, spending time with the people I love, and doing the things that matter to me.

I would never tell another person whether they should or should not pursue a lung transplant. Instead, I would encourage anyone considering it to learn as much as possible. Talk openly with your healthcare team. Understand the risks, benefits, and recovery process. Talk with the people who may become part of your support system.

There are PFF Ambassadors who have received a lung transplant who can be helpful to talk with as you navigate the decision and the evaluation process. If possible, speak with people who have gone through transplant themselves, such as the PFF Lung Transplant Community Support Group. The support group meets monthly on Zoom at 1:00 p.m. Central Time on the fourth Tuesday of the month.

Then consider what matters most in your own life.

For me, choosing not to pursue a lung transplant was not about giving up. It was about understanding my options, looking honestly at my circumstances, and choosing the path that felt right for me.