‘I have had the privilege of living past my expiration date many times over.’

Alex Flipse was a young mom when she was diagnosed with idiopathic pulmonary arterial hypertension. She first noticed symptoms in 1998: She frequently felt fatigued but thought it was because she was chasing two toddlers while six months pregnant.

Alex, of Teceluma, California, originally shared her pulmonary hypertension journey in Pathlight magazine. The December 2020 issue launched the Pulmonary Hypertension Association (PHA)’s 30th anniversary with stories of the association’s early years, the journeys of long-time survivors and advances in pulmonary hypertension (PH) research. Read on to hear more from Alex.

By Alex Flipse

I was diagnosed with idiopathic pulmonary arterial hypertension in 1998 when just one Food and Drug Administration-approved treatment existed. I was told I had two years to live. I started Flolan the day of my first right heart catheterization. I was told that if I hadn’t started Flolan, I wouldn’t have made it two more months.

In the beginning, I was incredibly worried about mixing Flolan wrong. No matter how clean I kept my Hickman line, I had two or three infections a year for four years.

Waves of exhaustion and major depression left me practically bedridden. My kids had to take care of themselves and each other. I was basically a single mom because my then-husband was working six hours away and came home every few weeks.

Living in a small town in Texas at the time was another challenge. I had to teach the emergency nurses, doctors and the emergency medical services team about my condition.

Hidden strength

I was on Flolan for four years before Tracleer was approved. A few years after I was weaned off Flolan, I started working again. It was wonderful. After my divorce in 2008, I moved to Washington, D.C., to live with my sister.

In the 22 years since my diagnosis, I have found my voice and a strength that I never knew existed. PH gave me the freedom to speak out, raise awareness, lobby on Capitol Hill and run several support groups. I have volunteered at PHA’s Silver Spring, Maryland, office many times over the years and attended nine PHA conferences and events.

Hope for the future

When I was diagnosed, there was very little social media. Facebook lets me connect with other PHers and share memes to raise awareness. Having an invisible disease and other rare conditions is difficult. People don’t know how sick you really are, and it doesn’t seem to get better as the years go by.

I am hopeful for a cure. With PHA on our side, we will find cures for PH. I used to think we needed a single cure, but we are all so different. Our symptoms manifest differently, and the side effects of our treatments affect us differently.

I have had the privilege of living past my expiration date many times over. I never thought I would see my children graduate from high school, and I never dreamed I would hold grandchildren. I didn’t think I would make it to 30 years old. But here I am.

To read more first-person stories from people with PH, caregivers, families and friends, visit PHA’s Right Heart Blog.

Take advantage of your PHA membership for inspiring stories and in-depth content in Pathlight magazine. If you’re not a PHA member, join today to enjoy Pathlight, reduced PHA 2022 Conference rates and more.

Alex Flipse