By Nicole Kreish, as told to Haley Levine
When I was diagnosed with pulmonary hypertension (PH) at age 36, I was terrified.
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 after 15 years. I was well aware of how to live with an ongoing and possibly fatal condition.
I am 49 years old now. Here is my story.
Late 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 don’t come out of nowhere. I felt like I couldn’t get enough air into my lungs even though I didn’t exert myself. I went to the emergency room and to my doctor a few times, but was told I had asthma and was given an inhaler. This, of course, did nothing.
Then on the 4th of July weekend in 2008, I started to sweat profusely and had a strange pain in my chest, as if a chicken bone was hanging from my rib cage. I couldn’t even walk a short distance without feeling like I had passed out. I went back to the emergency room, where they put me on oxygen right away. This is also where I learned that I have pulmonary hypertension.
I stayed in the hospital for 21 days, and it was the most terrifying thing to say in my life. In fact they told me I needed to bring my family there to tell them what was going on. But when they said I would live 5 years at most without treatment, I tuned them out. Inside, I was scared, but something was saying, “You’re going to beat this and you’ll be fine.”
Doctors put a catheter into a vein in my chest during my hospital stay. This allows me to give myself medication every day using a small battery-operated syringe. I am very fortunate to have responded well to standard treatment for people with severe pulmonary hypertension. Within a week, I felt fine – better than I had in years. It was then that I knew I had turned the corner and would be able to live a full life, even with illness.
Back to Life
For the first four years after the diagnosis, I continued to live my life as I always have. I worked 50 hours a week as a property manager and attended most nights of the week. Then I realized I needed to slow down, so I retired. My mum got me a Yorkshire terrier I named Jägermeister (after my passion for Jägermeister). But she kept it because I was rarely at home between my work and my social life. As soon as I quit my job, Yeager came to live with me.
This dog has completely changed my view of life. When he entered my house, I realized that I wanted nothing but to be with him. I quit alcohol, started a plant-based diet, and started walking most days of the week. Instead of spending nights in bars, I was glad to go home, meet up with Yager and read a good book or watch TV.
Even though I wasn’t technically working, I found myself incredibly busy. She organized a pulmonary hypertension support group through the University of Kentucky. Ten people came and it was an amazing experience. I haven’t seen many other people with PH in one place.
In the almost five years that I led that group, we’ve lost many members, and that was a worrying thing. I’ve seen people in the hospital when they were first diagnosed, and I’ve been by their side when the drugs no longer work. I sat with them to stay vigil as they passed. It was an important way for me to give back.
I also became a founding member of the Pulmonary Hypertension Society’s Support Group Leader Advisory Board, where I train and mentor new volunteers to help direct the organization’s support group program.
new love
For years, the idea of romance never crossed my mind. That changed in 2018 when I attended the Florida Pulmonary Hypertension Society conference. While I was there, I stayed at my best friend’s house and got to know Tommy, her cousin. I thought it would go away after I got home, but after 4 months, Tommy moved to Kentucky to be with me. I made him promise he wouldn’t be my caregiver, which he accepted.
However, I am always amazed at how easy it is for him to accept me for who I am. I have a pump attached to my body that I can’t take off or turn off. It’s a part of me physically like my arms or legs. But Tommy has never seen it. He was always telling me that he saw pulmonary hypertension as just another part of me, but it made me stronger and made me appreciate the little things. I always tell newly diagnosed patients who are worried about a romantic relationship to stay put. When the right person is, he will always love you.
Discussion about this post