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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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Marcie McGregor Transcript

Jan 13, 2017

PH patient Marcie McGregor shares her pulmonary hypertension diagnosis story. Marcie discusses the importance of a strong support system and how advocating for yourself is monumental.

My name is Marcie McGregor and I am from Aiken, South Carolina.

About seven years ago, I started getting tired a lot easier and noticing that I couldn't practice softball with my daughter like I could before. I started getting more and more short of breath. I went to a pulmonologist, and he told me I had asthma and gave me an inhaler. Then later on he said, after it didn't get better, he said that he thought that I was I border line pulmonary hypertension, but he never would do anything about it. He never treated me with anything other than an asthma inhaler. My husband Scott could see me deteriorating day after day. He told me, he said, "If you don't go find somewhere, some other doctor, you're not going to be here in a year."

I feel like you have to be your own advocate, because if I didn't go and try to find another doctor, if I would have just taken his word for it, then I probably wouldn't be here. All I did, I Googled pulmonary hypertension specialist in our area, and I was so blessed to find my doctor. He had me diagnosed within three weeks, we had the echo and the right heart cath and it's been a long journey, we've had some set backs, but I'm doing fairly well right now. To go so long being told that I don't know, people acting like they really don't believe you're as bad off as you claim to be. Finding somebody that can relate to you and knows everything that you're dealing with and has dealt with it, it's like total validation. It's just an awesome feeling.

You know yourself better than anybody else, and you know before anybody else, before the doctor does, if you're declining. You can pick up on a lot more sensitive things than anybody else can, and if you don't get involved with your treatment and ask questions and do research, then you can't be disappointed in anybody else that you're not getting better. You have to take it upon yourself to do the work.

I just feel sometimes like I can't participate in things with my family sometimes because I have two daughters, and we would go shopping. I feel like I'm more of a burden sometimes if I want to go because they have to push the chair, because I can't walk, I still can't walk very far. I know if we don't take the chair then I'm going to keep them from doing what they want to do, but on the same note, they don't mind. They would much rather push the chair and me be with them then me sit at home while they're gone having fun. I have the best support system I could ever hope for, between my husband, my parents and my girls. I'm very blessed.

Just in our surrounding area where we are, there's been so many people that have learned about the disease that had never heard of it before, and they think I'm having some of those symptoms myself, maybe I should go and get checked out too. Maybe it's not PH, but I think more people are aware that it's out there and maybe that is something that they're dealing with and just don't know yet. Just being able to be positive and try to look on the bright side of everything, I think that's rare now a days. I do. I think so many people get stuck in the depression and just kind of sulk, and you can't enjoy life that way. You can't have a quality of life if you don't try to look for the positive things.

Don't be afraid to do the research and don't be afraid to ask questions. But when you do research, don't just use Google because it will scare you to death with old facts that are so out of date. Find people who have the disease and get involved in a support group so that you have that support system. You have a support system at home, but having a support system with people who truly understand what you're going through, I think that's very important.

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Mary Rogers
over two years ago

i also have PHA too. i can go and get my hair washed and once a week. while im out i go to eat and sometimes i go to a dept store to shop and stay too long . then im not able to go anymore that week it takes 3 or 4 days to recovey from that trip. but i am grafify to be here amen maryR