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

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Thekla McGinley Transcript

May 30, 2017

Pulmonary Hypertension patient, Thekla McGinley shares her story. Thekla discusses her frustration in getting a proper PH diagnosis and the importance of PH awareness when it comes to the doctors and nurses treating her rare disease.

My name is Thekla McGinley and I'm from Arkansas.

I started off having what they thought was bronchitis. For about two weeks it never would clear up and I continued working through that. I was lucky enough that my insurance we changed at my job, it changed so I had to go to a different doctor. Actually, I had to go to the emergency room. They saw fluid on me. It started there. They knew something was wrong and it went into three months before I was diagnosed with pulmonary hypertension.

It started off as maybe it's sleep apnea. Maybe it's heartbreak syndrome. I actually had a doctor tell me that because I had just lost my father too. A big thing was laying in the hospital bed and them saying your vitals are good but your pressures are high and your BMP is high. I said, "Well, just let me stand up and walk and see what happens because I can't breathe." It took a while.

The first year I was waiting to die. I was scared. Every little pain I had, every doctor who would say what I was feeling wasn't related to PH and it was because they just weren't knowledgeable in it. Not being able to see a specialist and not understanding why I couldn't just go a see a specialist. Family members thinking if you'd just get up and move you'd feel better or at times you don't look sick and friends and boyfriends just gone.

I was scared and I couldn't move literally for almost a year. The second year I got mad. I was mad at everybody. The way they reacted to me, not understanding the disease, not understanding the illness. Not wanting to be a part of my journey and I felt completely alone. 

Then finally, I decided to start looking into other doctors and going in to some support groups even if it took four hours to get there and I knew that what was going on with me that there was a doctor somewhere who could help me. I know I can't be cured, but I knew I could have a little bit better life than what I was having. Right now, that's what I'm doing.

I have found a doctor who is working with me. They don't know how I got it or if it was hereditary. Today, I got to meet the first person that I'd ever talked to on Facebook and so that was amazing, because when you meet someone who has it, you know automatically that they know exactly what you've been going through and how other people have treated you and how family members have done so it's been pretty interesting, but that was the best. Meeting someone who actually had PH was great.

When I was first diagnosed and I was on the pump that goes straight in, I went to the hospital numerous times the first year and the emergency room and the doctors did not know what I had. They didn't know how to deal with the medicine and I know all of this stuff. I know how to mix all of these drugs and put on me to save my life. I know that you can't stop it. I knew that you couldn't add things, other medicines to it. It was surreal that a world renowned hospital in Arkansas did not know about my disease that was rare, although they dealt with so many. That there's not a specialist who can do that.

If it wasn't for the knowledge of the internet and finding out about the disease and talking to other doctors online and people who helped, I don't know where I'd be. I don't know where I'd be so the awareness is the most important thing. Not just for regular people, but for the medical profession so much and Congress. I do my part there too. All I've done right now is make sure that my congressman knows that I'm aware. He sent me a very nice letter. He's aware of the research grant that we're trying to get going and they've said their door is open and so hopefully I'll be visiting someone very soon because I have to be heard. 

No one should go through what I went through. No one should have a doctor or nurse not understand what your illness is. I used to go out all the time and when I say go out, I was always visiting people, visiting other relatives. Dancing has always been a hobby, whether it's been Zumba or just going out and dancing even in my house. I miss that so much. I can move a little bit but not like I used to.

The stairs. The stairs still get me and I used to walk our presidential library bridge and our Big Dam Bridge that's in Arkansas. It's about three miles and so that's a goal I'm hoping to do again. I miss the exercise, the strenuous exercise and climbing Pinnacle Mountain. I'd like to do that again, but it'll be a while.

My name is Thekla and I am aware that I am rare. 

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware