Even with PH, I’ve finally been able to fulfill my dreams

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by BioNews Staff |

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An illustration for November's Community Spotlight on people living with pulmonary hypertension.
A close-up photo shows a woman from her shoulders up. She has her hair braided to one side and is smiling at the camera.

Stacey McCarthy was diagnosed in 2019 with idiopathic pulmonary hypertension. (Photos courtesy of Stacey McCarthy)

This is Stacey McCarthy’s story:

Hello, everyone. My name is Stacey, and I am honored and humbled to share my journey of living with pulmonary hypertension (PH) with you.

In 2009, I became sick very quickly and was diagnosed with idiopathic pulmonary hypertension. I was given little information and no news on what to expect. This led to depression for me.

But some things happen for a reason, and a voice told me to get up, get moving, and do the best I could. So I did. I went back to work and attempted to live a normal life. I didn’t attend support group meetings or get together with other PH patients. Doing that meant I’d have to admit that I was sick.

In 2012, I met a wonderful guy, and we hit it off. I explained that I had health issues but definitely played them down. He was very active, and that worried me. Would I be able to keep up with him?

He started riding a motorcycle, and I loved riding on the back. I was just sitting on my buns, which did not make me out of breath. I decided I could probably handle riding my own, and in 2014, I obtained my motorcycle license and bought a perfect little motorcycle! I fell in love with it right away. Finally, I had a hobby we both could do!

We were married in 2016, and he’s been a great supporter.

A woman takes a selfie next to her motorcycle in what appears to be a shopping center parking lot. She's wearing a black cap, buffalo plaid shirt, and a black leather vest with various patches and pins.

McCarthy and her husband rode their motorcycles from San Diego to Washington, D.C., in February 2023.

I soon felt the need to help others. I didn’t want anyone to slip into depression like I did, so I became a PH support group leader in San Diego. I also am a patient advocate for Janssen Pharmaceuticals. I love meeting new PH patients and walking them through my story in hopes of helping them.

I remember being in my doctor’s office 14 years ago, and I was overwhelmed and crying. I asked him to do whatever he could to help me stay on this earth long enough to see my son marry and to hold my first grandchild. In that moment, it seemed like an impossible request, but just two weeks ago, my son got married! And seven months ago, he made me a grandma to the most perfect little boy. (I know it’s a bit backward, but I’ll take it.)

So I made it! I’ve snuggled with my grandson, Greyson, watched my son become a petty officer first class in the U.S. Navy, and I see him smile at his new wife.

A photo taken from a high angle shows a woman holding her infant grandson. Her dark blond hair is tied back, and she's wearing a long-sleeve green T-shirt, while the baby is wearing a Harley Davidson onesie. Both grandma and grandson are looking at each other and smiling.

McCarthy holds her grandson, Greyson, on June 1, 2023.

If you are newly diagnosed, know it’s still OK to dream big!

In recognition of Pulmonary Hypertension Awareness Month in November, the PH Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by PH, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #PHSpotlight, or read the full series.

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