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As I write this column, I am wrestling with a decision I have to make in the next few days. I need to decide whether I’ll be having my fourth right-heart catheterization to check the pressures on my heart. And since I’ve been down this road many times, you would think this is going to be a walk in the park for me, but I’m scared and nervous

Here is why? I live with pulmonary arterial hypertension (PAH), a progressive rare disease that is treated by addressing the symptoms only and not the disease. The 22 pills a day I take have given me a lot of my life back but those pills come with side effects and great costs. 

After 2-plus years of hell, waiting for a definitive diagnosis, I finally learned I suffered from PAH. And my journey then began with my first right-heart catheterization in 2017.  I did not have a clue what or why I was having this done. I just figured it was another procedure and I would likely not get any answers why I couldn’t walk across the street, tie my shoes, or take a shower without being able to breathe properly.

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By this time, my symptoms were here to stay. But after this procedure, I finally heard the words “pulmonary hypertension,” and was referred to my current physician, who basically saved my life. 

Once I was diagnosed, it took about 2 weeks with the right medication to start getting my life back, but this was not easy. At that point, I decided I was going to give everything I have to fight this disease. I know this is a progressive disease and it has no cure but that went through one ear out the other. I wanted to be the first to beat this disease.   

Then in late 2019, I had my second right-heart catheterization. This time I knew what was going on and was looking forward to it cause I worked hard to try to beat this disease. As I started to feel better each morning, I would drive to the local park and walk or at least attempt to walk a few yards.  The first few days were rough but eventually, I got up to 50 yards and the next day I would try for 100 yards and then 150 yards. Some days I was able to go a little further but some days I could not. I would do this most days, but not always.

On a good day now, I can walk 700 yards in 6 minutes. But leading up to that mark, I had a lot of tears, setbacks, and new medications but I kept moving forward.  With all this hard work I thought I was going to get great news after my most recent catheterization. My doctor was going to tell me that my indicators had lowered. But, they had worsened. I was feeling better and walking to and from work every day thinking I’m going to beat this disease.

Not so. After a few days I met with my doctor to go over my results and I left his office saddened, disappointed, and wondering what do I do now.   

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Then came my third right-heart catheterization in December 2020. After feeling sorry for myself, I decided to work even harder to try to beat this disease. At this point, I was feeling better than ever. I walked 2 miles the morning of my procedure thinking this would help with my results. This time my results indicated the disease had progressed a little more, but my doctor was not too concerned. With PAH, the key is to keep this disease at bay and that’s what I did this time around. However, in my book, I saw it as another defeat: PAH 3, Gerardo Estrada 0.   

Everybody keeps telling me I need to accept PAH into my life and deal with it. But I have a very hard time with that notion. I have kept my attitude that I’m going to beat this disease but as I schedule my fourth catheterization, it started to set in that I may have to finally give in and accept PAH into my life.  

That said, I don’t know which way I’m going to decide.