When I was a child, my Scottish and Irish grandparents always played records of bagpipe music. At the time, I was into the Beatles and didn’t appreciate the musicality of the pipes. When I was 45, I took a paid sabbatical from my job and decided to reconnect with my heritage. So, I decided to learn to play. For three years, I practiced and played on a plastic chanter but finally graduated to bagpipes.

For 15 years, I performed in several bagpipe bands in New York, including a police band. I played at funerals and memorial events after 9/11. Those events were incredibly emotional, but I was gratified to strengthen morale and uplift spirits during such a devasting time. The last band I played in was the City of Albany Pipe Band, which performed at community events and parades.

In 2010, my hobby and passion saved my life.

At band practices, before playing the bagpipes, we used manometers to ensure our pressure and breathing was steady enough to play the right tones. One day, I couldn’t keep the manometer steady. It takes a lot of stamina and lung efficiency to reach the optimal range. I kept trying to get more breath into the bag but couldn’t.

Around the same time, I noticed I had trouble marching. During one parade, I was so breathless and had such bad chest pain, I thought I was having a heart attack. I told my fellow band mates to keep marching while I crouched over to catch my breath.

Finding help

I knew something serious was going on and I needed help. I went to a pulmonologist, who ordered a right heart catheterization, six-minute walk test and other ventilation tests to measure my lung pressure. He referred me to two doctors in Boston who specialized in pulmonology. They diagnosed me with pulmonary arterial hypertension and put me on triple oral therapy and oxygen within the month.

I realize I’m one of the lucky ones. I got diagnosed while I still had decent lung function, and early intervention really helped my outcomes. I found the right treatment regimen and didn’t let my symptoms completely dictate my life.

Invisible condition

Although I was lucky, I felt alone. I was scared. Google was full of misinformation about my mortality and chance of survival, and I didn’t know anyone else with PH. I asked my primary care physician to share my name with other patients with PH, but he didn’t know of any.

Later that year, I found a support group at St. Peter’s Hospital and that completely changed my perspective. I realized a lot of people were dealing with this condition. We all had the same questions about the latest medications, tests and oxygen use.

I was surprised by the diversity of diagnosis. We all had PH, but we had different types; we took different medications; and we had different ways of managing it. But we all were afraid of living with this disease and the isolating feelings that come with it. It was powerful to be around people who knew exactly what I was going through.

Call to serve

I’ve always felt a call to give back. I started my career in speech language pathology, working at a Veteran Affairs hospital with young men who had been brain injured on duty. Those 18-year-old boys had been shot in Vietnam and suffered traumatic injuries, like aphasia, a language disorder resulting from damage to the left side of the brain. It absolutely broke my heart.

I decided to move to educational speech language pathology and work with children. That became my career for more than 50 years.

Now that I’m retired, I try to volunteer when I can. I started answering calls on PHA’s Patient and Caregiver Support Line about a year ago. Support line volunteers answer questions or provide suggestions, but not medical advice. I usually share my own experiences.

One caller needed a right heart catheterization but was scared. I told her I had received five and described my experiences to ease her mind. I validated her fears but urged her to listen to her doctor. A few months later, she called to thank me for pushing her over the hump to get it done.

I also have received holiday messages from several people, which is incredibly gratifying.

It’s a two-way street. I love helping people, but the person on the other line is also helping me. I learn something new from everyone I talk to, and sometimes I apply their strategies to my life, or ask my doctor a question they had. It’s been really rewarding.

Marching on

I still play the bagpipes, but I use an electronic chanter instead of actual pipes. I can play all my favorite songs and still enjoy my connection to music.

I’m active in public policy. I participate in protests, and when I can, I take my grandkids. I think the protests are good opportunities to show them how to make their voices heard. We participated in the nationwide protests on April 5 in Cape Cod.

I am incredibly passionate about the environment. I volunteered at the Five Rivers Environmental Center in Delmar, New York, where I led student groups on hikes and taught them how to take care of the environment. Whenever I’m in Cape Cod, I’m a member of the Conservation Center, where I help clean up trials and preserve the natural beauty of the Cape. I try to volunteer as much as I can, but getting in on a definitive schedule is hard because sometimes I have bad days with my PH.

I try to connect with friends on a regular basis, too. Every Friday, I get together with teachers I worked with for 40 years for happy hour. I spend as much time as I can with my grandchildren, too.

My PH journey is about finding a balance between doing the things I love and living the life I want to live, while listening to what my body needs.

I’m very forgiving with myself. If I can’t do something on a bad day, I think, “That’s alright,” and wait for good days to come around. When they do, I cherish them. I hike longer, I laugh louder and I spend more time with the people I love. It’s about navigating each thing as it comes.