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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!

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Terry Jones - phaware® interview 285

Sep 27, 2019

PH Patient, Terry Jones on being a patient and caregiver and why research is important for the pulmonary hypertension community.

I'm Terry Jones and I'm a pulmonary hypertension patient.

I started having breathing problems when I was working back around 1998, and I got diagnosed in 2009, by a right heart catheterization. When I was first diagnosed, I started on a low dose of oral medication and it didn't appear to be working. But then after about two months, my wife said to me, "Terry, what are you doing? You went out to the kitchen for your coffee without your oxygen." That was the first time that I noticed that, wow, geez, this medication really is starting to work.

The limitations of what I can do have been gradually increasing. You get to realize what your limitations are and you have to kind of live from there on with the new limitations being your new normal type of a thing.

Originally my wife was taking care of me and then she had a stroke and once she was sick, I ended up being a caregiver for her and had to take care of her and [was] trying to take care of myself at the same time. Once she passed, then I was just having to worry about myself. The biggest concern that I had in those regards, is when I'm in the hospital, when it comes time to leave, because I'm living by myself.

The doctors say, "Well, Terry, you're going to have to go into a rehab or to a nursing home type of a situation for a period of time before we let you go home." It's just not me. So usually, they'd have me spend an extra two or three days in the hospital so I can convince them and walk and get around, start to do things, so that I could let him be able to let me go home by myself, which so far, I've been successful with that.

When I was first diagnosed back in, even in 2009, the doctors were telling me that you have two or three years to live. Typically, there isn't really too much that you can do. There's not that many medications that were available, and now there's up to, I believe at last count, I believe it's around 13 different medications are available. This is all done through awareness.

The more people that get to be aware and the more research they can do, the better it is. That's one of the reasons why my biggest thing is the research. I gave nine vials of blood for different organizations to be able to use for doing research to try to come up with a cure, trying to come up with a better life for people with PH.

I'm hoping, that with all the research that [pulmonary hypertension] is getting to be more well known, than it certainly was five or 10 years ago. With new research, hopefully there's someplace around the corner that we're going to have a cure coming up. That is what I'm hoping for.

I'm Terry Jones and I'm aware that I'm rare.

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