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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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Joellen Brown - phaware® interview 231

Mar 22, 2019

Pulmonary hypertension patient Joellen Brown discusses being born with a hole in her heart in 1956 that developed into a PH diagnosis in 2009 and the importance of support groups and PH research.

My name is Joellen Brown, and I am a pulmonary hypertension patient.

I am from Columbus, Ohio. I was diagnosed with PH 2009, but that's not where my journey started. I was born with a hole in my heart, back in 1956. So not a lot of treatment, not a lot of surgeries that went well. I was one of the lucky ones. They were able to do open heart surgery, put a patch on it. So I went through my life not being able to take gym or doing a lot of stuff like that. I was told not to have any kids, to really watch myself.

Well, I ended up with three daughters, no problems. Relatively good health, until I was 40. They found out that I had a tear in my aortic valve, so I had a second open heart surgery. For 40 years, I was not on any medication. When I hit 40 is when I started that. Then my health went in peaks, off and on, until I was diagnosed when I was 54 with pulmonary hypertension. I went in not being able to walk very far, very out of breath. Couldn't do stairs. I went to my regular doctor thinking, "Okay, I'm just getting older, I'm overweight, just like everybody thought." Or, back in my mind, maybe it was my heart.

My doctor had me walk around the hall, and my oxygen was 67 at that time. She said, "Joellen, I can't send you home without oxygen, and you can't drive home." So that was my day with oxygen. I had to have my daughter come and get me. But back then, I didn't know what was happening, so she sent me to a cardiologist that specializes in PH. And that's when I had my first right heart catheterization, and he diagnosed me then.

For me, I know when you're first diagnosed with PH, it's very scary. For me, for 54 years, I've had this heart condition and to me, it was just one other thing. At the time, I didn't know how serious it was, so I'm thinking it's just one other thing I'm going to have to deal with in my life, and I'll just go to the doctor and he's just going to say again, "Lose weight, get in better shape, and you'll be fine." So when you are with that diagnosis, yes you go home and you look it up on the internet, which is not a real good thing to do. It was just like, "Okay. Now what am I going to do?"

So the two things for me was being on oxygen, and the other one was having to quit my job. Those two things, because at 54, you're thinking you're going to be able to stay at this job until you retire. I worked at a call center, so I thought, "Well this is a good job for me. I'm sitting down, I'm not doing anything strenuous." But when you're on the phone eight hours a day, you get out of breath really easy. And I was trying to carry those little portable tanks with me, and I had to walk out in the boonies. It was just getting too much.

Getting into a support group meeting, where you meet (other patients), that has been my saving grace. That helps me, going one on one, meeting people, getting to be friends with them, hearing their stories. My support group is small, and so a lot of us have the same PH doctor, so we're able to relate all with that, so that's been good.

Make sure you get a support group in your area, because you're really going to need that, because family and friends are not going to understand. Even though they say they want to help, they're not going to understand what it feels like getting up in the morning and it's like, "I don't want to get out of bed. I just don't want to." I would say those things is what you really need to do.

I've heard of a lot of people say, "Some of my family don't even know that I have this." My girls, I told them right off. I explained to them what it was, so I've kept them in the loop about everything. Maybe I'm not supposed to, maybe I tell them too much. So they understand. They're getting the awareness out there, it's like little fingers that just trinkle on there.

Even with my heart condition, I was always doing research studies at my hospital. It's a university, so it's a teaching hospital. I was always like a guinea pig. I always feel like if I can help out, so I do the phone studies. They'll call you and you do things like this. I can do that, I can do that over the phone, and I can answer questions, and I can talk about new treatments coming up and all that, so I try to do that part of it. I'm not physical enough to do the marathons and the walks and all that stuff, so I feel like if I can do those little surveys, then that's my thing that I can do.

My name is Joellen Brown, and I am aware that I am rare.

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