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

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Shaye Wallace - phaware® interview 241

Apr 26, 2019

Pulmonary hypertension patient, Shaye Wallace discusses her diagnosis at age 10, why she chose a Potts shunt surgery and how she's battling the depression that comes with living with PH.

My name is Shaye Wallace and I am from Houston, Texas, and I have pulmonary hypertension.

I was ten years old and I fell in school. I tripped over a backpack in gym class. I had fallen, and the wind got knocked out of me and I basically passed out. I ended up going to the hospital, because I complained of severe back pain. I went to Texas Children's Hospital emergency room. Basically, they saw something on the X-Ray and they thought something was wrong with my spine. The ER referred me to the Pulmonary Hypertension Clinic they have there.

I started out on the oral medications. It wasn't really working, so then I switched to an IV pump. It took a while to get setup on the pump, but then eventually I got on the right dose and I just stayed on it for a while. Then I switched to a smaller pump which is the Chrono 5.

At first the teachers told everybody. I thought that was a great idea at the time and then over time, it was just the fact that they would seat me differently and they would see me differently. In elementary, I joined Pep Squad. They would always say, “Shaye, you should sit out. You can't do this because of what you have.” They were trying to tell me what to do and what not to do and these were the kids, not the teachers, which is kind of messed up.

Towards Junior High, I started getting quiet about it, keeping it hidden, being obsessed with the fact that I would have to keep it hidden. I couldn't say anything, otherwise people would just see me differently and not treat me as equally, as a normal person. It would irritate me at the thought, in elementary, I would get stared at because they would see my bag and my pump and they would be like, “what is that?” It wasn't comfortable for me to explain to them. You would have to explain your whole life story and I never liked to do that.

In junior high, I started getting really secretive with it. It was when I got the small pump is when I started hiding it. So I would wrap it up and put it in the side of my jeans so I would keep it very hidden and nobody would suspect that I had it. It was a lot easier for me. I would wear baggy clothing to keep it all hidden. What annoyed me the most is when the nurse would come in my classroom and I would have to take medication during the day, too. So she would come in my classroom in junior high and it was sixth grade and seventh grade when she would do this. People would stare at me and it was the worst feeling in the world. I don't like it when people point me out in front of a big crowd. It's really nerve-racking.

I think eighth grade is when it started getting better. I started making friends. I didn't tell anybody that I had it. All my friends never knew. Ninth grade came around and it got better. I started not taking my afternoon medicine until I got home so it got easier not to be at the nurse all the time.

It was pretty normal throughout high school, except for missing a ton of school. There was depression that came with it. I would have to miss days because of depression. I think there was only one incident when my line broke at school. I was in art class and it was first period. I was fixing my line and I do it secretly all the time, adjust it because sometimes it just gets tangled and it would be uncomfortable. I heard a snap and that's when I saw the blood and stuff and so I just stood up, pretended like nothing was happening, and I ended up going to nurse. That was the one time that something crazy happened. Other times, it was a lot of absences, doctor's appointments and missing a lot of schoolwork.

It was in twelfth grade, there was this one ECHO that I had that was significantly worse than most I had had. That's when the PH doctors were like, there's little time and I think we should start talking about the transplant. I went through the worst depression when they said that. Then my mom was doing some research and she looked into a Potts shunt in her PH family [group] that she was in. She was like, “how about Potts shunt?” We suggested that to the doctor. My doctor wasn't on board with it. He was just like, “we don't do this here.” So my mom reached out to St. Louis, and they looked at it and they were like, “yeah, she would benefit with it.” We talked to my doctor back here and he was just like, “I don't think that's a good idea,” but he eventually referred me to St. Louis.

It took a while for the insurance to push it all through and it was actually, really nerve-racking waiting for the insurance to approve it. It was really hard. Eventually, they did. It was really nerve-racking, at first, but then, thinking about the transplant and how more risky that would be, it sort of put my mind at ease that I'm doing this different procedure than a lung transplant. It was a weight lifted off my shoulders, basically.

I go into surgery thinking that it would be a few hours. They said five hours, it would take. I end up waking up 48 hours later. I feel like it was the lowest point of my life after my surgery with the recovery. It was really hard, weight wise. I've had a really bad time with my weight and I should've gained more weight before the surgery. Yeah, recovery was really hard, really hard.

It was the pain factor, mostly. It was the depression. It was the weight. It was all that combined. The pain factor was the fact that my left side was always hurting. So much pain, I couldn't sleep flat. It would be so hurtful to do it. I couldn't feel my left side for a while. I think it was like that for about five months after the surgery, I couldn't feel my left side. The depression, too, of the fact that couldn't gain my weight back. When I saw myself in the mirror, it was terrible. I didn't know who this person in the mirror was because she was skin and bones. It was the hardest time. I've never been good with weight so it just made it ten times harder.

I started drinking nutrition stuff and I started eating a lot. I started TPN in the summer time which is the nutrition thing where they put a PICC line in and they put nutrition in your body and you do it every night. That's what I did every night. It was really hard because it was around prom time and graduation and it was the hardest thing. I was tip-toeing around trying to get the PICC line out before prom and before graduation. Eventually, I persuaded my doctor to take the PICC line out right before prom. So, I made it to prom. I had a significant amount of meat on my bones, better than it was. I had a great time at prom. I made it to graduation.

I got back on PICC line after my graduation. I didn't like the PICC line. It was really annoying. I felt like I could gain the weight back by myself. I ended up during the summer, taking the PICC line out and just doing a weight thing myself. After I graduated, after the weight thing, I fell into a depression after high school. After this, I had a significant amount of more life to live and it was an overwhelming thing for me. It was like, I have all the life in the world now, more life than I had and I don't know what to do with it. It was a hard time overall. I don't regret the surgery. It was a good decision I made. It was just the recovery was very hard.

My mom told me to take the year off, because I'd been dealing with PH since elementary school. When she said I should just take a year off, I didn't want to do that. I had told her that I want to do something better with my life. I wanted to go to college but, at the same time, I was in this rut at the time and I ended up not doing anything and just resting, mostly. I've actually been trying to go to college. I've been trying to go into the real estate business. It's been hard because I feel like I'm in this deep hole right now but [want to] get back on my feet, basically. I have been trying to look for jobs and put myself out there and do better things. But it's been a lot. It's hard with the depression that comes with PH, I guess, essentially. It's almost a PTSD. It feels like something bad is going to happen. I've been trying to put positive thoughts in my head and just tell myself, it's okay. I feel like if I just keep telling myself that I'm okay, it'll get stuck in my brain that I am. And I also use a lot of quotes to help: a lot of poems; a lot of little things; posters I have; a lot of things around me that I use to help myself.

Recently, I've actually been able to cope with the fact that I need therapy. It's surprising for me because I've never wanted therapy. I've never wanted anything to do with it. I thought it was bogus. I thought it was stupid. I just kind of discovered that there's nothing wrong with therapy. There's really nothing wrong with it, as much as I was telling myself that when I was younger and I didn't believe it. But now it's different. A lot of people, especially younger than me, are ashamed of therapy no matter what they're going through. I was ashamed of therapy for a while. It took me a while but I had to discover in me that it's not a shameful thing to do. I thought I could do it myself but it's not really possible for me to do it myself.

I discovered that I am very strong and I've become very vocal about what I have. I'm very open about it now and I'm really glad I'm here where I am now with the kind of mind set that I have now. And, yeah, there will be hard days but I'm going to just try to make every day better than the last.

I am Shaye Wallace and I am aware that I am rare.

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