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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!

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KC Yates - phaware® interview 368

Mar 29, 2022

Pulmonary hypertension patient, KC Yates, discusses battling COVID-19 twice during the pandemic and how she relies on her inner-strength to battle her rare disease.

KC Yates:
My name is KC Yates. I'm from Michigan. My PAH just came on randomly. I was pretty much having headaches, where you couldn't talk to me. You couldn't make noise around me or anything. Then I moved down to New Mexico, and on November 15th, 2018 is when I first got diagnosed. I went into the hospital, because I was having shortness of breath and the headache still, and couldn't barely walk around the house. So we went up to the house and they said I had idiopathic pulmonary arterial hypertension.

The first few months were scary, because me and my husband at the time didn't know what was going on, what we were dealing with or anything. We had my mom come down to help us. When we took her back, I had my initial first appointment with my pulmonary hypertension doctor. He was like, “I want you to get on the subcutaneous pump. And I want you to have that safety net of the lung transplant evaluation.” So we went through all that, the nurse came out. I got on the pump. I was scared at first to get on it. We trialed an error with. I went up and did my double lung transplant evaluation. And they told me that my lungs were too healthy to even consider getting the lung transplant. So that was relieving.

I kept on asking my doctor if I could get off the pump, because it hurt so bad. I just wanted to be free again. I felt like I was tied down to something. I couldn't take showers by myself. I couldn't walk by myself. I couldn't do most things that I'm doing right now by myself with that pump on. A year later, I got off the pump. I went on the oral meds and titrated up to the same dose that I was on with the subcutaneous pump. Made myself sick a couple times to get to that right dose. Then a year after that, I got a divorce. Now I'm on Opsumit and Sildenafil. My heart is back to normal. I am doing super good. I'm considering going back to work. I'm happy where my health is, but they said that I still need the two meds to cope with everything. Then I developed some other medical issues on top of that. So just managing them all together is frustrating right now, but I'm getting there.

When I moved back up to Michigan, I got a new doctor and they did the right heart catheterization. They did all my testing over again. They were like, your numbers are awesome. We want to see if you can stop all meds. If not, we'll put you back on two meds that we think are going to help you. So I stopped all meds. I did another right heart catheterization, and my numbers jumped up a little bit. So they put me back on the Opsumit and the Sildenafil and I'm only on those two right now for my heart.

When COVID actually started becoming a thing and we went into the lockdown, I was not doing anything different. I was wearing my mask in the stores. Sometimes I wouldn't wear my mask because it was hard for me to breathe in them. I had to get a special cloth mask that I could actually breathe in. Around Thanksgiving time, I got COVID and I was down for two weeks. All my health problems jumped up to more intensified. I couldn't eat anything. I couldn't smell nothing. I couldn't taste nothing. Thanksgiving dinner didn't taste good at all. I got over that. Then my grandpa got it. So I got it again, unfortunately. But this time it was less of a sore throat and a headache. So I'm glad that I did get my vaccine. I'm not boosted yet. I don't know if I want to get boosted, but they told me that if I didn't get my vaccines when I did and got COVID, it would've been more worse with my PAH.

So the first reaction, it was weird because my hip was numb. So I went up to the hospital for my hip being numb, I'm like, my hip's numb, and I have a headache and my chest hurts. They sent me home because nothing was broken in my hip. Then the next day I'm like, okay, more intensified symptoms. I told one of my best friends who works up at the hospital and she gave me a COVID test. Within an hour she's like, yep, you got COVID. She's like push Pedialyte. Push any meds that you can take, like cold meds. So I pushed a bunch of cold meds. I pushed a bunch of water. The only thing that I was concerned about is not eating and not sleeping. I couldn't even keep the water down. I couldn't keep nothing down. So it was scary to not be eating. I lost about 70 pounds from not eating. They were worried about me losing pounds, so I went to my GI doctor and she put me on some anti-throw up meds, which I'm still on right now. Then everything went back to normal.

I have celiac vomiting syndrome. So certain foods I can't eat like pizza, tomatoes. Anything acid I can't eat because then I'll just throw it up. But it wasn't a big deal. Not seeing anybody was big. Not being able to do nothing was my biggest concern, because I was bored. The not sleeping. But other than that, it was okay.

I am considering going back to work. With all that, I moved back to home. I got a divorce. I'm living with my parents, because I can't afford nothing by myself. I went back to school for my medical assistant degree. I just finished with that. Now I am waiting to hear back from two jobs that I've only applied for. If I get it, I get it, great. Then I'll go through the hoops of the social security to go back on work and all those major questions. Then, if I don't, then I'm going to focus on my associates degree. I start that for nine months, and then see where I go. I'm not pushing hard to get a job, but if I get it, I get it. I have to try at least something. If I don't try, I will never know.

I would say, be patient with this disease. Try new things, because not everything's going to work out for you like it did with me. Everybody's different in their own aspect. Trial and error with your doctors, see if there's any changes that you guys can make. Some doctors are willing to help you get off the meds, and some doctors are just like, no, you can't ever get off these meds. Just try. If you don't try, you will never know. From where I was, not being able to take a shower by myself or walk around the house, to where I am, where I can walk around my house, I can take a shower. I can do anything I want right now. It's a blessing. I just went with the flow. And I knew my body was going to do whatever it wanted to do. I knew that if it was meant to be for me, it was meant to be. If I was meant to be on that pump for my whole life, it was meant to be. But I am glad that I'm not on that pump anymore.

It makes you stronger. I've realized going through all these health issues and seeing where I was before, I'm the strongest I will ever be. I encourage everybody to take that strength and put it to their health, because the stronger you are, the more stuff that you can take on. I took on more health problems and it doesn't phase me, I just take it like a champ right now.

There are Facebook groups that you guys can get on. I've been helping about five people so far with their pumps and with their meds and just pretty much helping them navigate what I've gone through and telling them my tricks and my tips. What you should not do or do, if this is right or that's right. So everybody's different. You've just got to navigate yourself, for yourself.

My name is KC Yates, and I know I am rare.

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