Volunteer Shares Her PH ‘Tricks of the Trade’

Karen Duncan, 70, was diagnosed with idiopathic pulmonary arterial hypertension at Mayo Clinic in Jacksonville, Florida, in 2019. Duncan, who was a healthcare finance administrator for most of her career, is a PHA Peer Mentor and Patient and Caregiver Support Line volunteer. She lives in Michigan with her Yorkie, Mickey.

Retirement is often pictured as a time of rest and time to reward yourself for all the hard work you have done throughout your career. When a life-changing diagnosis coincides with retirement, things can get a little bit crazy. That’s what happened for me.

Transitioning from a structured career to a wide-open schedule can be daunting enough, but losing the ability to travel freely and realize all the dreams I had for my newfound time required a mental reset.

I wasn’t going to be able to fulfill all my retirement dreams, at least not in the way I had imagined, so I set about determining what I could do.

I needed to preserve my retirement income, so I found a way to pay for the very expensive drugs that were keeping me alive through The Assistance Fund.

To get to Jacksonville to see my doctors was a five-hour drive, so I found Angel Flight, a free service where pilots donate their planes and their time to people with serious conditions like PH. That’s me, with an Angel Flight plane.

I wanted to travel, but I had to accommodate my 24/7 oxygen requirement, so I started doing more travel by car than by plane. (The U.S. and Canada are great!)

I wanted to stay active, but I couldn’t get enough oxygen when I exercised so I bought an electric bike. I also figured out a way to have oxygen in the pool so I could swim. (I have a crazy system for a floating tank.)

I started to think I should share all the things I was doing for myself with other people. I had good skills in the medical insurance industry from my former career. I found a PHA-accredited PH Care Center for fantastic medical care. I had come up with solutions to deal with the day-to-day issues of living with PAH. All of these things just fit with the idea of volunteering.

PHA is the premier organization to connect people who have this rare disease to each other. It helped me connect with resources and find credible information about PAH.

I started volunteering on the PHA Support Line, just answering questions, relating my experience to other people and connecting them with resources. It really wasn’t that hard or scary.

Eventually, I decided to also become a peer mentor, which allows for more personal exchanges through email rather than just the phone. For me, volunteering serves as a bridge to maintain health, social standing and mental sharpness in my retirement.

I still struggle some with loneliness since leaving all my friends in Florida when I moved to Michigan. (Hurricane Helene flooded my house in 2024.) I am frustrated with the oxygen requirement that prevents me from international travel and curtails some of my physical activities.

But I am in pretty good health, thanks to my medical care and pharmaceuticals. I am alive, and I love sharing my tricks of the trade.