Deborah Webster’s PH Story

August 30,2017

I’m Deborah and this is my PH story.

In the months leading up to this life changing diagnosis, I had been experiencing breathlessness. I have always been very active, exercise, try to eat “healthy” and take my vitamins. That’s the magic solution to life, right? That is what our doctors tell us.

I am a late bloomer and decided at age 51 to run a 5K. I took a class through a local athletics store for a “couch to 5K”. For several weeks we trained with coaches and experienced runners to help us through it. I successfully ran my first 5K that fall. I wasn’t the fastest, but I finished. I was proud to be able to do that. I ran another race with good results. My 3rd 5K however, was a different story.

I couldn’t get more than two blocks without having to stop and feeling like all the air in my lungs had been depleted. I would pause for a couple of minutes, regain my breath and run again. I ran the entire race this way. I thought it was because it had been almost a year since my last 5K and I didn’t train (Note: This particular race was through a town that has hills. As I later would learn, it is inclines that make it difficult for those of us with PH).

I had 2 more incidents – One I was climbing up steep steps on a bridge over a river in Galena. I had to stop halfway up. My husband was concerned and asked, “What is wrong with you?” I didn’t give it much thought. The other we had a go cart race as part of our neighborhood block party. The idea was to build a go cart and push your partner around the track once and then switch places.

I couldn’t get very far without having to stop…

I thought that would be easy. I had the skinniest woman in the neighborhood as my partner. I felt sorry for her since I have at least 20 pounds on her, and she had to push me! On my lap pushing my partner, I couldn’t get very far without having to stop, and again felt like all the air in my lungs was gone. I felt like the whole neighborhood was looking at me with what is wrong with her? She is the one that exercises all the time.

At that point, I knew something was wrong. I saw my primary care physician for my yearly checkup not long after. She said I had exercise induced asthma. I was never tested for asthma however. She sent me for a standard stress test. The doctor’s office never called me back with the results so I had to call her. The diagnosis was mild mitral valve regurgitation and there was nothing they could do about it. I felt like I was dismissed. I knew it was more than that. I knew it wasn’t my heart, but my lungs.

Luckily, through a friend at the Pilates studio that I attend recommended a cardiologist to me- she had open heart surgery just recently. I made an appointment and after telling him my story, he said maybe you are out of shape. I responded maybe you should come to my Pilates class on Sunday.

My O2 dropped and my heartrate skyrocketed.

He did end up running me through a stress test again. The difference is with elevation at intervals. Well, at an elevated level, BOOM! My O2 dropped and my heartrate skyrocketed. Within minutes the cardiologist was in the room with me. Immediately after that I had a VQ scan. He got it. He knew. Within that week I had and echo and a PFT test. A week later my first right heart catherization. That one scared me. No one ever said Pulmonary Hypertension during this whole process.

The very next day after the right heart cath, I was at the University of Chicago with a PH Specialist. The diagnosis was Pulmonary Hypertension. What??? What is that? Don’t Google it. We did. When I got out of the doctor’s office, my husband held me in his arms and we cried, right there in the hospital. We thought I was going to die.

Since then, I have adjusted to my new normal. I am on 2 oral medications and am doing well. No more 5Ks or gardening (or go cart racing!), but I still practice yoga and Pilates regularly. I do have modifications for both avoid having my head below my heart. Last year we got kayaks and I love paddle boarding. In all, I am pretty active. I do have bouts of exhaustion and need to remember not over-schedule myself.

I am thrilled to soon be a part of Team PHenomenal Hope’s #LetMeBeYourLungs program! How exciting to partner with an athlete that can do all those things I can’t! To keep me in their “pocket” and let me join in on the race!

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