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

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Mary Hale - phaware® interview 366

Mar 8, 2022

Pulmonary hypertension patient, Mary Hale discusses the power of positivity in life post PAH diagnosis.

Mary Hale:
My name is Mary Hale, and I'm from Ohio. I was diagnosed in February, 2010. I had open heart surgery in January of 2010. So once I went through all the testing, then I had a diagnosis. I had PAH. I had a pain in my side, and thought pulled a muscle at work, and I was just babying it, and I finally went to the doctor. They did all this stuff. It didn't look good. I went for a heart catheterization, and they kept me, and I had open heart surgery January 25th, Monday morning, 2010. I remember it plain as day. They couldn't believe I was still alive. I was dumbfounded, because I had no clue what it was. They didn't even know what it was. The lung specialist that was brought in during the surgery, explained to me that he thought I had PAH. I'm like, "What is that?" So he said to me, "It affects the right side of your heart. It's the pulmonary artery. It affects your breathing." So he sent me to a specialist at OSU. I did all those tests, and that's when I was diagnosed.

I was in grad school when it all happened. I had the open heart [surgery.] and everything. I had dreams and stuff. I don't know how many times I could say this, it overwhelmed me. I cried a lot. What is a chronic illness? Why did I have this? How did I get this? There's no answer. No one knows how they get it, unless it’s hereditary, which is idiopathic pulmonary arterial hypertension. So from that day on, when I left the hospital, up until now, I'm on oxygen. I'm on constant oxygen.

I did work up until 2013. I did finish grad school. But after that, it was just hard, because when you wear oxygen, they see a red flag. It was very devastating. I cried a lot, and I prayed a lot. I spoke to mentors that I had. I was just confused, like, "Why do I have this? How in the world do I have this? Out of four siblings, I'm the middle one, how did I get it?" It's a roller coaster. Everything changes. Year after year new medicine, new doctors. It's an adventure to be honest, because you just don't know.

For 17 years I taught pre-school, and 10 of those years I worked with a program called Head Start, and it's working with inner city children and parents. My degree is in non-profit. I wanted to work with the inner city families. I had a heightened desire for that. Because I grew up in the projects until I was in middle school. So having a heart for that, I wanted to go to school so I could have the background and then go back to it and say, "I want to do this." That was my desire. I didn't get a chance to do it. One thing happens for a reason. One door closes… you know how they say that. But right now I do volunteer on Tuesdays, which I haven't because of COVID, with the inner city school program in Springfield. So that's exciting to me, and I can't wait to get back to it.

In 2013, my heart couldn't handle all the work I was doing at work. I was tired a lot more. My pressures were just too high. So I did go on disability, so I'm still on that. From then on, I was just a homemaker, worked with kids at church, volunteered a lot, and plus, with the PH Group out of Dayton, Ohio, I'm one of the leaders, so I do that. Then up until 2018, it was the week of Thanksgiving, it was that Wednesday, November 21st, I'd been really tired, and was going to bed early, and my husband was like, "Boy, you must not feel good if you missed NCIS." So that Wednesday, I was cleaning my Hickman, which is, if you're on IV Remodulin®, like I am, you have the Hickman [port] coming out of your chest. You have to clean it every seven day or when it gets wet. So I was cleaning that, and I end up putting clear regular tape on my line, instead of the tape they provide - the good tape. For some reason, I thought, "Well, I can't get it off, let me use these little bit of scissors."

When I pulled the tape, I cut my Hickman, which about freaked me out. I called my husband at work, and I said, "You've got to get home. I cut my Hickman, I've got to get to UC." So next thing I know, he wakes me up. I'm laying on the floor. I passed out and didn't know it. So he drove like a bat out of hell, down 75 going to UC. I remember getting there, and I remember he had to have two guys helped me out, because I was dead weight because of my leg. When I passed out, I landed on my left side of my hip, which grew into a big hematoma. I couldn't walk it out, laying as long as I did, all the nerves crushed.

I remember being in the ED, emergency department at UC, and I remember they put a Remodulin® IV in me, because I cut my Hickman. I remember talking to a nurse, and next thing I know, I woke up December 3rd. They called my husband that night, November 21st, and asked if they had permission to put me on life support, which was the ECMO. Come to find out, I had MRSA, that developed into pneumonia, and I was really bad off. Thanksgiving Day, that evening, they told my husband, "You might want to make funeral arrangements, because we don't think she's going to make it through the night." Lord behold, I did, and I'm here. It was just craziness, in my mind, it was craziness, because you remember going there, and then you wake up with tubes, and you're like, "What is going on?" It was just a sense of, "Wow, what did I just go through?"

Because when you're on the ECMO, you're either getting a lung transplant, heart transplant, or you're just buying time, and I was buying time, but I survived it. What happened was, I stayed in ICU, cardiac ICU, for almost, oh gosh, two weeks, because I had to get to rehab, because I had to learn to walk again. Because there for a while they were afraid that I wouldn't be able to talk, or know to do anything, because I was so down for almost 10, 11 days. So they didn't know if my cognitive [functions], if I could speak, or anything, would come back. It is life-changing.

I hear people, "Wow, you've only got five years to live." No, you don't. Don't read that. The medicines have changed Everything has changed. I know somebody who's going on 24 years that is living with PAH. Look at it as, "I have today." You've just got to look at one day at a time, and live life. You've got to live life, you cannot give up on life. And people that are wearing oxygen, I hear so much, "Well, I don't go anywhere, because I wear oxygen." Oh honey, hush. I have tanks. I go out to lunch with my girlfriends, my husband and I go to movies, I go shopping. You've still got to live, you've still got to live. You cannot let this win over you, you've got to be stronger in your thoughts. You've got to be stronger in how you want to proceed with your life. Even though you have this, you still are a warrior. You've got to fight.

Sometimes I'll be like, "This is not where I thought I'd be. I didn't think I'd be at the spot I am." But here I am, and I can still walk. I still drive a car. I can still clean my house. I could still do things. I don't need help. I can still do it. Now, my left leg, it works, but I have like a little limp, because it's still numb on some parts. The nerves didn't come back, so it's not full strength like my right one. But I still walk, I still do things. I still live life. I still will sometimes catch myself asking the question why, why do I go through with this? When in reality, why not me? Maybe I'm being used for something, to share with others that you can do this. Your attitude depends on how you deal with PAH. I have a positive attitude, I mean, I'm not happy every day. I have down days, absolutely, but I can't let this overtake me. I've still got a life to live. I still have family, nieces and nephews, and great nieces and nephews, that come over, and we just... I still have a life. My two dogs, and my husband, I still have a life. I don't take nothing for granted anymore. I mean, you just don't.

The only thing I can say is, people with PAH, yes, it's overwhelming. Yes, it's a chronic illness. Yes, in our lifetime, we will probably not see a cure. With that in mind, we've still got to get up each day, and live our life to the fullest. When you open your eyes, you have another day, be thankful. You've got to have a positive attitude, and that's what everyone asks me. My friends, they ask me, "How do you get through this?" I say, "Well, grace of God, a prayer, but attitude, you've got to have a positive attitude to get through anything." For something like this, this ordeal, it's all attitude. You've just got to be positive. It could be so easy to be a humbug, like an Eeyore or something. Be a Tigger. Be ready to bounce. Be ready to just have fun, and live life.

My name is Mary Hale, I am aware that I am rare.

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