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I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Andy Sagraves Transcript

Oct 24, 2016

10-year-old pulmonary hypertension patient, Andy Sagraves shares his story. Andy discusses living a life of compromise, theoretical physics and how being diagnosed with a rare disease is a gift.

I am Andrew Sagraves and I am from Nashville, Tennessee. I am 10 years old now, and I have pulmonary hypertension.

 I had open heart surgery when I was 5 days old. As a result of the open heart surgery I gained pulmonary hypertension and I was about to die and they just put me on the medicine that I'm still on now, just hoping that I would live for another month or so. Then it worked, magically, and I’ve been on it every since.

 I started going to school at third grade, and I was completely new. I have a really good set of friends and I believe that none of them saw any difference in me. I was taken in like I was a regular kid with nothing wrong with me at all.

 I would explain it as "This is my backpack, I have a pump inside it that pumps a medicine up to my pulmonary valve. It softens my pulmonary valve so that blood with oxygen in it can reach my heart."

 You must know there is a lot of compromising because of PH. You can't run around a lot. You get tired a lot faster than other people so you have to compromise for the sake of doing stuff that other people can. You can't do it fully, but you can get it to the point that you can enjoy it.

 I did soccer until, I think it was first grade. I still do it today, just with my family, and I do tennis. I also really enjoy science. I just really enjoy the concept. The deeper that you go into it, the more exciting. To me, a new discovery in science, for example, for me it would be a few more elements added to the periodic table. That happened recently. I just jumped up and down because I was so excited at there more being the foundation of science. I'm really interested in theoretical physics, which is relativity, string theory, anti-matter, Higgs-Boson, et cetera, and nuclear chemistry.

 I just think the complexity in just how the universe works. I like to take things apart and put them back together again. Not really, but just in a way. I like to see, "Hey, how does this work?" I do a thought experiment and I just see how it works in my mind. I think that understanding my pulmonary hypertension at such an early age, may have impacted that. I think that probably had an impact on my physics and chemistry.

 If nobody knew about PH, nobody would be here. If only the families that knew about PH knew about PH, I would probably not be alive right now, because the doctors and all of that. The more people, the more funds, and the more contribute to the PH industry.

 Anyone out there with PH, boy or girl, young or old, it's really a gift, if you look at it on the inside. Without PH, you would not meet all these amazing people. You would not share special qualities. Without PH, you will not be who you are right now. You can see it as evil or you can see it as good. Or you can see it as both. I generally tend to see it as both. Good, what I just said, in that you get to interact with other people. Bad, you have to take care of it. Bad, you have to put up with it. You know what I mean? PH, in what it is, it's a defect in your body. It's bad. What it does is good. It is very good.

 Don't let PH stop you from doing what you love.

 I'm Andrew Sagraves and I'm aware that I'm rare!

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