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

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KC Yates - phaware® interview 331

Jun 30, 2020

Pulmonary hypertension patient, KC Yates discusses her PH diagnosis, thoughts on motherhood, and the art of listening to what her body is telling her.

My name is KC Yates. I really didn't know what was going on. I'm like, "Okay, I have bronchitis." So I went over to the doctors and they did a chest x-ray, and they were like, "Well, you don't have bronchitis. You have pulmonary arterial hypertension. That's why your heart is four times larger than it should be."

I got diagnosed November 15th, 2018. They were like, "You have to go on Sildenafil, Opsumit.” I'm newly on Orenitram [as well.] I was on the subcutaneous pump for about a year and then I transferred to the oral meds, which is amazing.

[My doctor said], "Oh, you can't have kids. You can't walk by yourself. You can't exercise by yourself. You can't be alone. You can't take a shower. You can't do this. You can't do that." I'm like, "Uh, okay. I do all that, and now you're saying that I can't do that? I can't get pregnant? I can't do this, I can do this? What am I going to do?" My mind was racing, and I got out of the hospital and the kid thing just hit me. I'm like, "I can't have a kid. What am I going to do? I'm 23. I want a kid and I can't have it." Just being home, not being able to do nothing, it would drive me nuts.

With the subcutaneous [therapy], I got trained with it. It was like, "Hey, I don't know how to do this. I don't want to do this. I don't want to stick myself with a needle. And I don't want the pain with it." It was mind-blowing what people and myself had to go through just to stay alive. When I did the sub-Q, I didn't like the pain. It was okay. [My doctor said], "If your pressures are good enough to switch you to oral meds, we will." I said, "Okay. What would we have to do for that?" [My doctor told me], "You have to do a right heart catheterization."

It was three months where I had to wait for them to do it, because I was still new to it. I asked every time that I went to the doctor. [I would ask], "Hey, can I get off this?" The [doctor would say], "Not yet. Hold on. Your pressures are not good. Your numbers are not good. You're still walking not as far as we'd like." So I finally waited and I didn't even have to ask my doctor. I had the look in my eye, like, "Can I get off this?" He said, "Yep, your pressures are good. You did your right heart catheterization great." I'm still switching from my body getting used to it and stuff like that. I'm doing the right heart catheterization this month to see if the meds are actually working. So I'm excited to see if they are working.

It was very hard to accept that I can't have any kids. I still get baby fever when I got out and see a cute baby. But most of my friends have kids, so I can go over there and spoil them, and I get my baby fever fix. I still want to try to have a kid. I asked the doctor, "Can I ever have a kid?" He said, "If you do everything that you're told to. If you get on a CPAP machine." Because apparently, I have sleep apnea with it. They're like, "You might be able to have a kid. We don't know. But you might be able to. If not, there's more options."

I'm thinking that I'm going to be able to do all these tests and if all my numbers come out perfect, but you never know what they're going to come out. I'm hoping to see myself be able to have a child and to be able to stand on my own two feet by myself. I'm open to adoption. I'm open to fostering. I'm open to the surrogate thing. I'm open for me to have my own kid, also. But if not, there are other options.

What I've noticed about myself is that when I was not diagnosed with it, I could do everything in the whole entire house. I could go sweep. I could do the whole house in an hour. I realize when I was doing all these meds that the meds were not letting me do everything. I just did one room at a time, even though it drives me bonkers. I has to learn I can't push myself or I'm going to either A, end up dead, or two, end up in the hospital fighting, because I pushed myself. I take it easy now, and it's hard, but I'm a go-go-go person. I don't like sitting around the house. I don't like not helping my parents. Or when I was married, I wanted to help outside and I couldn't because the disease was so harsh on me. I couldn't go for a walk. I couldn't take the dogs for a walk. I'm like, "Okay. Can't do it. What do I do?"

Every person is different in what they can or cannot do. Just find what you can do with this disease and yes, it might drive you bonkers like it drives me bonkers, but you will get used to it. Either A, you're going to push yourself to do something and hurt yourself, or B, you could just do it gradually and be able to set a goal. "Oh, hey, I could probably do this, but I gradually have to do it." If I want to mow or whatever, I do one line and then come back after I'm done, out of breath, or whatever, and then do another one. I'll do the same task over and over again until I get done, but I would have to take breaks.

Your body is telling you, "Oh, hey, you can't do this. That's not going to be a great outcome for you." Or your mind is like, "Oh, yeah, you can do this." You have to listen to both. I listen to my body more, because that's what my body is telling me, "Oh, hey, I can't do this." Then I gradually go up to my mind like, "Okay, I can do this. But I got to take breaks." It's hard to get stuff out of your mind that it's like, "Go clean out the pool," or, "Go clean the car," or whatever. You're like, "I can't do that." You have to shut your mind down to it. You have to listen to your body.

Like I said, I'm a go-go-go person, so my body is like, "Oh, hey, you have to do something today. You have to do this. You have to do that." My other half of my body is like, "Uh, no. You can't do that." I think it's just how I am, going every day, I have to do a task every day. But when I don't feel good with the meds and stuff like that, I know when to come home. I know when to lay down. I know when to take a nap and take it easy. If I don't feel good, I won't get out of bed. I won't go out into the cold and do stuff. I'm very eager to see what summer brings for me to be able to do stuff.

My name is KC Yates and I am aware that I'm rare.

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