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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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Patricia Harrington Transcript

Nov 24, 2016

Patricia Harrington is a long-term pulmonary hypertension survivor. Patricia discusses how she has battled her rare, life-threatening diagnosis by doing as much as she can to enjoy life. Though she has had to compromise her love for country dancing and exploring lighthouses, Patricia’s positive outlook and passion for PH awareness motivates to do everything possible to educate medical professionals and members of her community.

My name is Patricia Harrington and I’m from Glendale, Arizona.

13 years ago I was diagnosed. Of course, a couple of years before that we were trying to figure out what was going on. I've really been blessed I've only been taking a single medication and haven't had to go on to all these complexities of all these different mixing the medicines. All this other stuff that a lot of people have had to do. I've had it for 13 years. I live with it. I try to do everything I can possibly do in whatever range I have of being able to go that day. I want to do as much as I can, I don't want to leave anything uncovered. I want to enjoy life.

The news and the things that you would read about PH at the time were that you weren't going to live past 2 1/2 years. I wasn't relieved at all. I was scared and worried. For several years I was thinking I was going to die just any moment. That's probably where I got the idea I wanted to fill up my life with everything I could do so that if I died tomorrow it'd be all right. I still did everything.

Another thing we used to do was go to lighthouses and climb those steps, 200 and something steps sometimes. I loved it. I couldn't always get too high without having to stop and rest. I loved climbing to the top of the lighthouse. I can't do that anymore either. We used to dance. My husband and I used to country dance 4 or 5 nights a week if we could. I would get dizzy as years went by, I would get too dizzy. I would not be able to do what I used to do. We used to country dance a lot. In fact at the first PH affair that we went to it was a fundraiser. They had country dancing. That was before I was on oxygen. We danced that dance. My doctor happened to be there. He was just laughing at me being able to dance. It didn't last much longer after that. I just get too dizzy.

The housework, I don't do that much anymore. Little things like that start happening as you go along. I'm really passionate about getting the word out and media. I want to learn how to get TV and newspaper coverage for our support group and PH community back in Phoenix. That's one thing I've been working hard on.

We don't want the patients that are suffering now to have to wait 3 or 4 years for the right diagnosis before they can get on the right medication. If they continue going to doctors who don't know anything about PH. They're going to have a lot of trouble. We would like to prevent that from happening. Hopefully the doctors will start learning more and more about PH. When you see or read the stories about the children, you certainly ... I don't want the children in the future to have to suffer the way we have been doing. That's another future hope is another good reason for making people aware of it.

I'm Patricia Harrington and I'm aware that I'm rare!

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