“I fish, travel, camp and go to festivals. I’ve come a long way, and I’m proud of myself.”
On Jan. 10, 2010, I was told I had idiopathic pulmonary arterial hypertension (PAH).
The past 10 years haven’t been easy. I first noticed a change all in one day (during Christmas weekend 2009). I got short of breath going to the bathroom. I felt like I had run a marathon and then got hit in the stomach with a basketball.
At that time, I was homeschooling a child and had no insurance. I called my church, which had a medical clinic. I was told to be there at 7 a.m. I got there, and they examined me but couldn’t find anything wrong. I was so short of breath. I was then sent in for X-rays, a CT scan and a MRI and still nothing showed up. I then was sent to do an echocardiogram. The echo was for approximately one to two minutes, then they stopped. She looked at the screen, then at me and said, “Get dressed, then go to my office.” Once in her office, she said, “I’m not sure how to say this, but you’re very sick and have something that’s very rare. There are different types, and the form you have is even more rare. You have idiopathic pulmonary arterial hypertension, and we need to do a right heart catherization (RHC) ASAP.”
After crying for a while, I called my uncle and told him the news. I made calls, and everyone met me at my pawpaw’s. Once everyone was there, I broke the news. My mom’s face cracked along with my pawpaw’s.
The time came for my RHC. My mom, my brother, my mom’s youngest sister and her two girls were all there. I was told that if I had a blockage, I might need to have stents, but the doctors wouldn’t know until they started the procedure. During the RHC, I turned blue, and my heart started rejecting. I was having complications but no blockage. They wanted to Life Flight me to Houston, but my mom had to take time off work and drive me because I didn’t have insurance.
I began to see a pulmonary hypertension (PH) specialist in Houston, who took me off the Revatio I had been taking since the RHC. She put me on Adcirca, which I’m still taking. About four years into it, I was put on Tyvaso, but it caused my migraines to worsen, so I was off of it within a month or so. After being taking off Tyvaso, I was put on Letairis, which I also still take. With both Adcirca and Letairis, I haven’t had any side effects, and they’ve helped me tremendously.
I was put on so many worldwide prayer chains, and that was a blessing. I didn’t realize how many people loved me and wanted me to survive.
At the time, I was going to college for my B.A. in psychology and had a 4.0 GPA. After my RHC, I ended up with a 3.75 GPA.
At the end of February 2017, I had a PH specialist appointment. During the visit, I felt and looked awful. He wanted to check me into the hospital, but I refused. I refused because my pawpaw had cancer and was dying. It was his birthday the next day, and it could’ve been his last. I made a promise to my specialist that after my grandpa’s birthday, I’d check myself in, and he agreed.
In March 2017, I was put on Remodulin. I was asked which pump I wanted, and I said I want all the information and I’d let him know. So when the time came, I chose the subcutaneous pump. The pros outweighed the cons. In the beginning, the subcutaneous hurt bad, and I hated it, but once I got a method and solution down it wasn’t so bad. As of today, I’m doing pretty well — a lot better than I was at first. I still have bad days, but more good days than bad. For the most part I stay active except in the winter. The cold air constricts my breathing and makes me have more bad than good days.
I try to spread awareness and advocate for myself and others. I raise money every year for PH and that means a lot to me. I’ve also met some great people along the way. I participate in 5K walks, and the last two years I’ve completed them. Doing the 5Ks makes me feel good, gives me a sense of accomplishment and shows me how much I’ve improved. I fish, travel, camp and go to festivals. I’ve come a long way, and I’m proud of myself. Until God says my time on Earth is up, I’m going to keep pushing.