By Nicole Creech, as told to Hallie Levine
When I was diagnosed with pulmonary hypertension (PH) at age 36, I was terrified.
But then I remembered this wasn’t my first rodeo: I was born with sickle cell disease, and doctors said I wouldn’t live past the age of 15. I was well versed on how to live with an ongoing and potentially deadly condition.
I’m 49 now. Here’s my story.
A Delayed Diagnosis
Like many other people with PH, I went undiagnosed for several years. I had really strange symptoms such as shortness of breath and fatigue that would just come out of nowhere. I’d feel like I couldn’t get enough air into my lungs even though I wasn’t exerting myself. I went to the ER and to my doctor several times, but was told I had asthma and given an inhaler. That, of course, did nothing.
Then on Fourth of July weekend in 2008, I began to sweat profusely and had a weird pain in my chest, almost like I had a chicken bone hanging from my ribcage. I couldn’t even walk a short distance without feeling like I might pass out. I went back to the ER, where they put me on oxygen right away. That’s where I also learned I had pulmonary hypertension.
I was in the hospital for 21 days, and they were the scariest says of my life. They actually told me I needed to get my family in there to tell them what was going on. But when they said I’d live 5 years at most without treatment, I tuned them out. Inside, I was scared, but there was something that said, “You’re going to beat this and be fine.”
Doctors placed a catheter into a vein in my chest during the hospital stay. This allows me to give myself medication every day using a small, battery-powered syringe. I’m very lucky because I responded extremely well to the standard treatment for people with severe pulmonary hypertension. Within a week, I felt great — better than I had in years. That’s when I knew I’d turned the corner and I’d be able to live a full life, even with the disease.
Getting Back to Life
The first 4 years after diagnosis, I continued to live my life like I’d always had. I worked 50-hour weeks as a property manager and partied most nights of the week. Then I realized I needed to slow down, so I retired. My mom had gotten me a Yorkshire terrier that I named Yager (after my fondness for Jägermeister). But she kept him because I was rarely home between work and my social life. Once I quit my job, Yager came to live with me.
That dog completely altered my perspective on life. When he entered my home, I realized I didn’t want anything but to be with him. I gave up alcohol, started a plant-based diet, and began walking most days of the week. Instead of nights out at bars, I was content to be home, curled up with Yager and reading a good book or watching TV.
Even though I wasn’t technically working, I found myself incredibly busy. I organized a pulmonary hypertension support group through the University of Kentucky. Ten people came, and it was an eye-opening experience. I’d never seen so many other people with PH in one place.
In the almost 5 years that I led that group, we lost several members, which was sobering. I’ve seen people in the hospital when they were first diagnosed, and I’ve been bedside with them when the medications were no longer working. I’ve sat with them to keep vigil while they passed. It’s been such an important way for me to give back.
I also became a founding member of the Pulmonary Hypertension Association’s Support Group Leader Advisory Board, where I train and mentor new volunteers to help guide the organization’s support group program.
A New Love
For years, the thought of romance never crossed my mind. That changed in 2018 when I attended a Pulmonary Hypertension Association conference in Florida. While there, I stayed at my best friend’s house and got to know Tommy, her cousin. I thought it would peter out after I returned home, but 4 months later, Tommy had moved to Kentucky to be with me. I made him promise he wouldn’t be my caregiver, which he accepted.
Still, I’m always surprised at how easy it’s been for him to accept me for who I am. I have a pump connected to my body that I can never take off or shut off. It’s as much a part of me physically as my arms or legs. But Tommy has never batted an eye. He always tells me that he sees my pulmonary hypertension as just another part of me, but one that’s made me stronger and made me appreciate the small things. I always tell newly diagnosed patients who worry about a romantic relationship to still put themselves out there. When it’s the right person, they will always love you.