30 Days of PF: Choosing Not to Get ‘On the List’

Photo courtesy of Rand O’Brien

Day 22 of 30

This is Rand O’Brien’s story:

It started when I began feeling short of breath when I reached my third-floor office. I thought it might be my heart since two years prior, I’d had two stents put in. But after my primary physician heard crackles in my lungs, it was clear in reading the doctor’s report that something else was happening.

After the initial shock of learning what interstitial lung disease meant, I was diagnosed with idiopathic pulmonary fibrosis four weeks later by my pulmonologist. A second confirmation of the diagnosis came six months later at Mass General (MGH). Both pulmonologists urged me to begin the process of getting “on the list” for a lung transplant.

After a minor exacerbation this past spring, I decided that, yes, it might be a good idea to get on the list. I diligently read about transplants and set up a daylong virtual preliminary assessment with MGH.

Having been a psychotherapist for 45 years, focusing on trauma among veterans and survivors, I had dealt with the possibilities of people’s deaths on a daily basis. The thought “Just because we can, should we?” came to me on one of my daily walks in the woods with our dog, Ruby.

I was ambivalent about a transplant. Through my spiritual journey over my adult life, I saw death as a part of life, something not to be feared, but rather to accept.

I heard the first nurse during the first interview note that the life expectancy for a 73-year-old after transplant was one to two years. I’m 72, and I had my answer.

Letting the MGH team know I would not be pursuing a transplant has freed me to my own life. The answer “no” to the question from the woods lifted a great weight from my shoulders. I actually felt lighter. I am free to live the life that the universe is determining, without the chosen rigors of a transplant. Either exit wasn’t gonna be pretty, but I’m looking forward to the life I have with little anxiety and wondering what is going to happen. It’s just gonna happen.

Pulmonary Fibrosis News’ 30 Days of PF campaign will publish one story per day for PF Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofPF, or read the full series.