Ron Ancrum, 76, was diagnosed with pulmonary arterial hypertension in 2017. He retired in 2018 to focus on his physical and emotional health. During his career, Ron worked as a higher education administrator, consultant, nonprofit executive and associate professor at the Boston College School of Social Work. In 2021, he published “Keep On Moving: My Journey into the Fourth Quarter,” a memoir documenting his PAH diagnosis journey and how he manages his health. He lives in Charlotte with his wife, Pamela, and daughter, Erica.
Two years can be a lifetime for someone with pulmonary issues. That’s how much time has passed since I last shared my story with the Pulmonary Hypertension Association.
In 1975, I was diagnosed with sarcoidosis at 25, and in December of 2017 I was diagnosed with pulmonary arterial hypertension at 67. With PH, there will always be ups and downs, but my goal is to stay as socially active as possible and not let anyone place a barrier in my path.
To celebrate Pulmonary Hypertension Awareness Month, I wanted to share how I emphasize my health and prioritize what matters most in life, which for me is connection, traveling and staying motivated.
A care team that cares
The most important aspect of living with PAH is the relationship I have with my doctors. Mine are good listeners, and we work together to manage my PH symptoms. These relationships can make all the difference in having a positive mental and physical experience. I keep them informed regularly and ask questions about new treatments and oxygen therapies. There’s always more you can do to better manage your health, and being educated is a good start.
Travel accommodations
I use oxygen every day, and at home I rely on a large continuous-flow concentrator. When I travel or leave the house, I use a portable oxygen concentrator.
Last June, my wife, Pamela, and I traveled from Charlotte to Vancouver, Canada. We had one layover, which allowed time to recharge the battery for my portable concentrator before the next flight. Unfortunately, our gate ended up changing three times, and each time we had to flag down an ADA cart to make the gate change. All that moving around made it difficult to fully recharge my battery since I was using battery power for each change. By the time we reached the final location, we had only five minutes left before boarding time.
Fortunately, I still had enough battery power to continue our trip, but it made me think about traveling in a new way. I learned to bring multiple batteries for my portable concentrator (at least four) to ease recharging stress, make recharging a priority between flights and conserve battery power by lowering the flow rate. The plane ride is only half the battle; you also need to make accommodations once you reach your destination. Before traveling, I contact my medical service provider to rent an oxygen machine and that’s delivered to my hotel room. This usually requires a letter from your doctor.
I also travel with a collapsible electric chair that folds like a baby carriage. It’s not a medically approved wheelchair, but it’s great for sightseeing at museums, going to sporting events or concerts. Considered a personal mobility device, the equipment is FAA approved and the battery is detachable. Because of safety concerns with lithium batteries, I purchased Fireproof Explosion containing Battery Safe Bags, for extra safety when carrying them on the plane.
I also bring my nebulizer and devices to check my vitals, such as blood pressure and oxygen saturation. It’s a lot of extra “stuff” to manage, but that makes it possible to go wherever, whenever I like.
I’m a firm believer that mobility is key to staying healthy. Not only the experience of travel, but staying in touch with family and friends brings enjoyment to my life.
The need for more specialists
This past spring I participated in classes at a pulmonary and cardiac rehabilitation center through a local hospital. I needed encouragement to exercise more and participate in physical activity on a regular basis. It was informative and provided routine classes to increase my physical activity. I made significant improvements on the six-minute walking test, and it helped me focus on diet, strength and balance.
My next step is to connect with my care team about undergoing individualized exercise training, such as with a personal trainer. Because there are limited trainers who specialize in working with patients who use oxygen or have chronic illness, it’s important to find the best fit for you to ensure your needs are being met. We are still at the forefront of research and treatment developments, and I think this would be a pivotal next step to help those with PH prioritize their physical health.
Keep on moving
The most important thing you can do to help yourself is focus on your mental health. My doctor and I agree that my activities have been critical to me living longer than expected. Do not sit at home and do nothing because you’re tethered to some oxygen machine. It does not need to be that way.
I keep my mind active, playing games such as The New York Times Spelling Bee, Wordle and Strands. My wife and I often go out to listen to jazz and socialize with friends over a meal. I stay active in several organizations that keep me engaged in the community. At least six times a year, my wife and I take a road trip for a long weekend or hop on a plane for a vacation. Of course, all this requires lots of planning to ensure safety, but it’s worth it.
It’s now been eight years since my diagnosis. I have adjusted to a new normal. Much of what I’m able to do is because of the help of my family and friends who keep me motivated to live. I continue to live PHearlessly and choose every day to emPHasize my health.
