Living life to the fullest with pulmonary hypertension

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By Nicole Creech, as told by Hallie Levine

When I was diagnosed with pulmonary hypertension (PH) at the age of 36, I was horrified.

But then I remembered that this wasn’t my first rodeo: I was born with sickle cell disease and the doctors said I wouldn’t live past 15. I was very adept at living with an ongoing and potentially fatal illness.

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 weird symptoms like shortness of breath and fatigue that just came out of nowhere. I felt like I couldn’t get enough air into my lungs even though I wasn’t trying. I went to the emergency room and my doctor several times, but was told I had asthma and was put on an inhaler. Of course that didn’t do anything.

Then, on the weekend of July 4, 2008, I started sweating profusely and felt a strange pain in my chest, almost like a chicken bone was hanging from my rib cage. I couldn’t even walk a short distance without feeling like I might pass out. I went back to the emergency room where they immediately put me on oxygen. That’s where I found out that I had pulmonary hypertension.

I was in the hospital for 21 days and that was the scariest saying of my life. They actually told me I had to get my family in there to tell them what was going on. But when they said I would live at most 5 years without treatment, I tuned them out. Inside I was scared, but there was something that said, “You’re going to beat this and you’re going to be fine.”

During the hospital stay, doctors inserted a catheter into a vein in my chest. This allows me to give myself medication every day with a small, battery-powered syringe. I am very happy because I have responded very well to standard care for people with severe pulmonary hypertension. Within a week I felt great – better than I had in years. I knew then that I had turned the corner and could lead a fulfilling life despite the illness.

back to life

For the first 4 years after the diagnosis I went on with my life as I had always done. I worked 50-hour weeks as a property manager and partied most nights of the week. Then I realized I had to slow down, so I backed away. My mother had given me a Yorkshire terrier that I named Yager (after my fondness for Jägermeister). But she kept it because between work and personal life I was rarely at home. After I quit my job, Yager lived with me.

This dog completely changed the way I look at life. As soon as he walked into my house, I realized that all I wanted was to be with him. I gave up alcohol, started a plant-based diet, and started running most days of the week. Rather than spending nights in bars, I was content to be at home curling up with Yager and reading a good book or watching TV.

Although I wasn’t technically working, I was 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 had never seen so many other people with PH in one place.

In the almost 5 years that I’ve led this group, we’ve lost several members, which has been sobering. I’ve seen people in the hospital when they were first diagnosed and I’ve been in bed with them when the medication stopped working. I sat with them to keep watch while they passed. It was so important for me to give something back.

I also became a charter member of the Pulmonary Hypertension Association’s Support Group Leaders Advisory Board, where I train and mentor new volunteers who help lead the organization’s support group program.

a new love

For years, the thought of romance never crossed my mind. That all changed in 2018 when I attended a Pulmonary Hypertension Association conference in Florida. I stayed with my best friend there and met her cousin Tommy. I thought it would dissipate after I returned home, but 4 months later Tommy had moved to Kentucky to be with me. I made him promise that he would not be my caretaker, which he accepted.

Still, I’m always amazed at how easy it was for him to accept me for who I am. I have a pump attached to my body that I can never take off or turn off. It’s as much a part of me physically as my arms or legs. But Tommy never batted an eyelid. He always tells me he sees my pulmonary hypertension as just another part of me, but one that has made me stronger and made me appreciate the little things. I always tell newly diagnosed patients who are worried about a romantic relationship to get out there anyway. If it’s the right person, they will always love you.



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