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

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Kaitlyn Thompson - phaware® interview 378

Aug 2, 2022

Pulmonary hypertension patient, Kaitlyn Thompson describes coming to terms with the difficult reality of not being able to carry a pregnancy due to her PH, as well as detailing an emotional recent near death experience.

My name is Kaitlyn Thompson. I'm from Maryland. I was diagnosed with pulmonary hypertension when I was nine. Before that, I had had heart problems. I've had two open heart surgeries. I had one when I was three and one when I was six. My pulmonary hypertension diagnosis is actually because of my heart problems that I had when I was really little.

I remember the moment that we sat down in the doctor's office and he told my mom what was going on and that I'd needed to have surgery. My mom was only 21 at the time. She had me really young, so she was 21 going through me having to have open heart surgery. So the one when I was three, I don't really remember. But when I was six, I remember what was happening. I don't really remember going into surgery, but I remember after I just wanted my mom. I don't really remember being in much pain or anything. It was pretty smooth from what I remember.

Still, after the surgeries, I was still really out of breath. I would get short of breath doing pretty much anything. I couldn't participate in gym classes in school. Originally we had thought that was because of my heart problem, but once that was fixed surgically and I was still having the symptoms, they figured they needed to work further in figuring out what the actual problem was.

I first got diagnosed with asthma and smaller things like that until I went back to the original hospital and they did an echocardiogram. They told my mom basically the diagnosis and I was too young to fully understand at the time. They told her I had pulmonary hypertension and I would have it for the rest of my life. I remember she was pretty upset about it, just hearing all that it was, and I was only nine.

They were trying to get me on some medicines that would help, but it was difficult for them to try and figure out which medicines would work on someone so little. I started on just two medications, I think. As I got older, the disease progressed more and more, and I added more medications and more treatments and everything. It was pretty scary for me, too, even though I didn't fully understand. I thought my lungs were like good. I thought my heart was the issue. Then the second diagnosis came on. So it was pretty difficult at the time.

In middle school, I was at the point where I could still kind of participate in some things in gym class, but I did have to sit out for a lot. I remember being embarrassed that I was the only one sitting out. People would always ask me why I was sitting out, because there's nothing visibly wrong with me. It was difficult for me to explain when I was in middle school. But in high school is when I really started learning about it, and researching into it myself, and discovering what it truly was and what I would have to look forward to in the future with the disease progressing.

I didn't participate in one high school gym class. I didn't take gym at all. My school counselor actually did a modified schedule for me so I wouldn't have to take gym class since it's a requirement in high school. They worked ways around that, because in high school it had progressed to the point where there was just no way that I would be able to participate in gym class.

I would also have a buddy to walk with me in the hallways. My high school was so big, there were stairs and ramps to get to all your classes. My nurse and my mom were worried that I would pass out or something being by myself. So I would have a buddy with me to walk to each of my classes, especially if they were upstairs. I would leave my previous class about five minutes early, and then we'd have five minutes to be able to walk, so I wasn't late to class every day. It was actually kind of a pleasant experience in high school. Then, of course, my high school experience got cut short because of COVID. It happened halfway through my junior year. That was a lot easier for me just being home. But it wasn't bad in high school at all. The emotional and mental aspects of it have been a little more difficult for me. Especially, I think it was more when I turned 17. It was in the process of transferring to an adult doctor rather than pediatric. They were more forward with me and more so talking to me rather than my mom.

My doctors told me I couldn't have children. That was very, very difficult for me. I had a very hard time with that when I learned that. That was probably the hardest part, actually, was learning that I couldn't carry children. I had always thought of people not being able to carry children as being infertile or having problems with their reproductive system. I thought that I would be fine and I would get to have my dream of having my own kids. Then the doctors told me that couldn't happen. So it took me a while to adjust to that thought of me not being able to have children.

Every time it gets brought up, even now, I get upset about it all over again, because it's just difficult. I've always dreamt of being a mom and having my own kids. But I've looked into other options that are adoption, surrogacy, things like that, that I could always do and still be a mom. It was just the wanting to carry my child part that was very upsetting for me.

I think the most emotional part has been what's happened most recently has been the worst for me, with this whole disease, I think. On April 4th, I was just sitting on my couch. I was on my phone and I got a heart palpitation, which is normal. I get them all the time. I'm sure a lot of other people do. But I felt like it didn't stop. I felt my heart, and it felt like it was going so fast that I couldn't even feel my heartbeat.

I reached over and grabbed my boyfriend's hand and made him feel it to make sure I wasn't just freaking myself out. He just looked at me and he looked scared. So I yelled for my mom. She came out and I said, "I think I'm going to pass out." As soon as I said that, I passed out. The next thing I know, paramedics were all around me in my house. I was just drenched in sweat. I wasn't understanding what was going on. I got into the ambulance, and I looked at the monitor, and it said my heart rate was 217 beats per minute. My oxygen was in the low sixties. I remember being in the ambulance and he put the pads on me. I couldn't really talk, so I couldn't ask what was happening. I don't really remember the ambulance ride much.

I remember getting to the original hospital. I remember there were just so many nurses and doctors around me. One of them kneeled down beside my bed and explained to me that they were about to shock me with a defibrillator. They said they were going to try get my heart back into rhythm, but they were going to give me some medication so I wouldn't remember it or even know it was happening. When they did shock me, it completely shut down the right side of my heart, because the right side of my heart is huge, because I'm in heart failure. It ended up completely shutting it down. I had to get flown by helicopter to Johns Hopkins hospital.

The interesting thing is I remember the entire helicopter ride, but I don't remember getting off the helicopter. I remember landing and I don't remember getting off. I remember waking up again, being in Johns Hopkins, and there were so many doctors and nurses around me. They were yelling and they just sounded so serious. This whole time, I didn't know what had happened. I thought I had just passed out, because I had passed out before. I didn't understand why everyone was freaking out so much.

They weren't telling me anything, because I wasn't able to understand it mentally, because of everything that was going on. So they were talking to my mom. They weren't really telling her much either, so she ended up leaving the hospital. When she got home, my doctor called her and asked if she was still at the hospital. My mom said, "No, we just got home." The doctor told her, "Well, you might want to come back, because your daughter is not going to make it through the night."

The doctors, they didn't think that there was a chance that I was going to make it, because they found out that I was in multi-system organ failure. I was in shock. My kidneys had started failing. My liver was failing. I was conscious the entire time, luckily. I just don't remember a lot of it. A lot of the doctors and nurses had to step out because they would start crying, because they weren't used to seeing someone so young, awake, going through all of this. They said most people going through what I went through are either unconscious or pretty old. So it was making them all pretty upset that they had to see me like that.

That's when they started me on the IV medication and put the Hickman line in. That's really what saved me and brought me back was starting IV medication, because I wasn't on that before. I was in the hospital for 16 days and then I came home. I've been in there twice since then, but just for little Hickman malfunctions and stuff. But nothing serious has happened since then, luckily.

I've been coloring since I was really young, because with the pulmonary hypertension I couldn't go outside and play much or run or anything like the other kids. I would find stuff to entertain myself mostly inside. That was coloring and anything artistic, drawing, absolutely anything. I used to model with clay. I used to make little bracelets. Then I got into the calligraphy and I started making quotes about pulmonary hypertension, to lift me up. I put them on canvases, and I set them up in my room, and I have some at my grandparents' house. When I was in the hospital, my grandma actually brought one of mine into my hospital room so I could see it while I was in there.

That's one of the main things that's actually helped is being able to see these quotes. It's also something that I enjoy, but it lifts me up at the same time. I also, of course, like to do the normal things. I love watching TV. My favorite show is Grey's Anatomy. I was in school for a little bit. I was actually in college when everything happened in April, and I had to withdraw, but I'm planning on going back next month. So I'm excited about that to have something else to do.

I think the most important thing that I wish I would've remembered when I got diagnosed is that your life isn't over just because of this diagnosis. You can still go out and you can still do teenager things. I remember thinking that I wouldn't be able to go out anymore. I just felt so alone. I know a lot of other people feel that way, too. I just think the main thing is just to remember that your life is not over because of this diagnosis.

Yes, it is scary, but there are treatments and it can get better. You just need to live your life. You can't dwell on the fact that we are diagnosed with this. I think you just learn to live with it almost, but it's very difficult in the beginning. I felt like my life was completely over. You just have to remind yourself that it's not. You can still go out and you can still hang out with your friends and you can still do almost everything that you used to do before. Just because you're diagnosed with this disease doesn't mean that you can't live your life.

My name's Kaitlyn Thompson, and I'm aware that I'm rare.

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