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

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Macy Thames - phaware® interview 404

Feb 21, 2023

Pulmonary hypertension patient, Macy Thames, discusses her PH diagnosis, her fear of not being there to see her son grow up, and the power of having not only a supportive partner, but a strong support system.

My name is Macy Thames. I currently live in St. Paul, Minnesota, and I was diagnosed with pulmonary hypertension in 2021. For years I've been dealing kind of with a sensation of just being unwell. I never felt good. I was always tired. My son's father, when we were together, was always, “you always say you don't feel good, you always say that you're tired.” In that timeframe, I actually started working nights. I'm a sleep technologist. A lot of that I kind of thought, “oh, well it's just my body. I'm just not used to working overnights.” The other half of it is I've always struggled with depression. With that comes a lot of fatigue. I just kind of kept pushing through it, thinking it's just me being lazy, being unmotivated, maybe I'm not sleeping good enough. Doctors are just like, "You need to lose weight, you need to exercise more." Not that I think that that was necessarily wrong. It just didn't paint the entire picture.

In 2019, I was taking my son, we were going to Disney on Ice and it was going to be this super fun thing that we were going to do together. We're walking through the skyway into the stadium. We had had to walk up this huge flight of stairs. I just couldn't catch my breath. It was like there was no oxygen in the atmosphere whatsoever. I was taking the deepest breaths you can think of. It just started at my peripheral getting dark and I just completely blackout. I woke up on the floor and had this crowd of people around me asking me if I'm okay. My partner at the time, he was on the phone with 911. I ended up going to the ER and had to get my skin glued back together, because I'd gotten in a pretty good gash above my eye.

The doctors were just kind of like, "Well, sometimes people just pass out. Maybe it was syncope.” They were just not really giving me any answers. Again, my partner at the time thought it was maybe my weight because I put on weight. Nobody wanted to hear me. I kept saying I just couldn't breathe. I couldn't get air. It was frustrating, but I just kind of accepted it because I didn't have any family history of heart issues or lung issues or anything. I was a smoker at the time. So pretty quickly after that I decided, okay, no more smoking. Maybe it's emphysema, maybe it's COPD. Maybe I've done this to myself. In hindsight, I'm really glad that I quit smoking, because I would've needed to anyway, and it's not like it's good for you to do.

I kept struggling through the next couple years. There'd be mornings where I barely had energy to get out of bed. Sometimes I would pass out after getting out of bed. Laundry was a huge struggle because I'd have to carry the basket upstairs in the apartment building. There'd be lots of times where I'd just have to lie down on the floor to catch my breath. It was just so frustrating because I'm like, I'm a woman in my thirties, I should be able to do these things. I felt like such a crappy mom. You want to be there to do all the things with your kids, and I just couldn't do them.

So a flash forward to 2021. It was April. I had just started seeing this new guy. I was leaving his house, and again, I felt that very familiar sensation of my vision going away, this loud buzzing in my ears. I'm like, "If I can just get to my car, I'll sit down. I'll be fine.” I did not make it to my car. He turned around to see me in his driveway. It had been raining, so he thought maybe I had just slipped or something, and then he realized like, oh no, she is out. Then I was finally able to sit up and at first he is like, "Oh, are you okay? Do you need to go to the hospital?" I'm like, "No, I'm fine.” He manages to see the other side of my face and he's like, “no, you are not fine. I am driving you to the hospital right now."

I thank God every day that he was able to convince me to do that because one, I needed 13 stitches, so definitely would not have been a good choice. But also once they hooked me up to the EKG, they were like, that is not the heart rhythm that we want to see in a woman in her thirties. The doctors kind of pretty quickly put together that it was pulmonary hypertension, but of course I had to go through all the testing. The echo and the right heart catheterization, all of that pretty quickly. I was being hit with so much information. The big thing being told, you can never have another kid, which was really hard because when I went through my divorce with my son's father, I kind of always thought, "Well, I can always have another family and have more kids with the person that I'm supposed to have more kids with." So that was kind of this huge bummer of like, oh, not only do you have this horrible disease that you're stuck with for the rest of your life, but also the future that you thought you were going to have. It's gone. It just was so much to process.

Then on top of it, I had just met this really, really nice guy and he was forced to take me to the hospital and accused of punching me in the face because they looked at me and saw him and thought, "did he do this to you?" I just really thought I was never going to see him again. Luckily I could not have been more wrong because he has been my saving grace through this all.

When I got my central line and I have this stupid pump that has my medication, I'm like, "Oh, he's not going to have to deal with all of that.” He just held my hand through it all and never making me feel like I'm less of a person or that I'm broken in any way. It's hard for anyone to deal with, but someone who didn't have a lot of stock in the situation from day one, that's what he's had to deal with and go through it all. Letting go of the future I thought I was going to have was hard, but realizing how much better the future that I meant to have has kind of made it all okay having to deal with all this. That's kind of where I'm at.

The one good thing that's happened on top of all of that is now after over a year and a half with the IV medications, my heart was very enlarged when I was diagnosed, and I was also in heart failure like a lot of people are when they're diagnosed as severe as I was. But I've reacted super, super well to the medications and my heart has gone back to normal, and I'm able to go on oral meds coming up soon. So I am just so excited to take my little boy swimming this summer, because he has missed mom being able to do that with him. Just being able to do things I never thought I would be able to do ever again. Going on miles long's hikes over the summer with friends, and just finally feeling like the person that I've always felt that I was, but I wasn't able to be for such a long time.

So Matt, that's my current partner, he has an 11-year-old daughter. Being able to also have that blended family and our kids get along so great. You get these ideas in your head of what family is supposed to be and how you think your life is supposed to go. Things just have a way of working themselves out. We just did family portraits over the weekend and the photographers, they didn't know we were a blended family, but just having them call me mom to both the kids, it means a lot. He's been so good with my son too. Every day, I'm just so grateful because I know everything could have been so different had I not had such a great partner. Also just my extended family and my parents, they've been so helpful because there is a huge financial strain that comes along with this disease and all the medications and having to take time off work. If I didn't have the family that I have, I wouldn't be as able to be as positive as I am. I think that the mental fight of this is just as important as the physical. Definitely 100%.

When I was first diagnosed, I struggled with, am I going to be around to watch my son grow up? That was my biggest fear because I just didn't want him to have to grow up without me and making all the plans that if I did pass, that he would be able to remember me talking to friends and being like, "If I go, I need you to still be in his life, so he has that connection to me. That he knows who I am, that he knows that I loved him." That's hard to prepare for. That's hard when your kid is five years old and you're thinking about prom and high school graduation, and if they get married, if they go to college, and missing out on all of those things.

Slowly, as I've gotten better, especially talking to my doctors and everything, they're very optimistic. While of course nothing is promised, I'm just more confident that I am going to be around for those things. And also feeling better… I'm able to take advantage of all the time we have now. It helps. There's always fear, but it just doesn't run my life the same way that it used to. I just feel mad lucky. I know not everyone has the kind of support system that I do, and this disease can be so isolating. So to have such good people, I feel so fortunate all the time.

My name is Macy Thames and I'm aware that I'm rare.

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