I’m Aware That I’m Rare: Abby Sherwood


Abby Sherwood discusses navigating life with pulmonary hypertension on the 15th anniversary of her PH diagnosis.

Transcript:

My name is Abby Sherwood, and I am a pulmonary hypertension patient.

From what I’ve been told, I think I was probably starting to slow down. Two-year-olds, they’re very energetic and they like to play, and they like to run around and everything. What probably happened was I probably started slowing down, and my parents probably noticed that I was more out of breath than usual, so they took me to my doctor. He did an echocardiogram and he did a right heart catheterization.

They diagnosed me with PH right off the bat. There wasn’t any other thing it could have been. My mom has described how she was in the room, and she said she was so mad she could spit nails. That was probably pretty accurate. Then again, I was really young, so I don’t remember. October 2018, it will be 15 years.

I don’t remember being healthy, so that’s not one of my challenges. One of those things I hear is these adults saying, “Oh yeah, I was diagnosed five years ago.” They remember being able to run around, do sports. They have been able to be healthy, and live a healthy life. I don’t remember that, so I don’t have a great sense of loss for an old life, because I don’t really have an old life that I remember.

Early elementary school was kind of difficult because I was on epoprostenol (IV therapy). You have to have ice packs in with your pump. Those had to be changed regularly at school, and I had to go down to the office for medicine during the day. That was kind of difficult.

Later on, sort of in middle school, I started subq, and for anyone that’s been on subq, they know that when you start a new site there is excruciating pain wherever it is. Even if I had a site in my arm, I always did it in my left arm, because I’m right handed. If I had it in my right hand, then I’d just have really bad pain and I wouldn’t be able to write, and that wouldn’t work.

Even if it was in my left arm, it would affect my ability to walk and do things. When you walk, you have a bouncing motion. We had to either put it in a sling, or if I had the site in my stomach, which was also a frequent spot, I would be in a wheelchair at school, which would be really difficult because I had a couple of friends that would be able to wheel me around.

That wasn’t working for me because my condition started to decline, and I had to be put on oxygen most of my day, and I had to start taking tanks to school, so that wasn’t that fun. I had to drag those around everywhere, and I had to walk everywhere. It was a small school, so it wasn’t that hard, but it was still fairly difficult.

Then we went back on the Broviac central line, and it started to get a little better, but I was still on oxygen. That was still difficult. Then I had Potts Shunt surgery in eighth grade, so that I had under oxygenated blood going to my lower extremities, and the better oxygenated blood going up here to my heart, and my lungs, and my brain. That helped me tremendously, but I missed a lot of school.

When I finally got back, I was behind on a bunch of things. We used to do this thing called accelerated reading, or AR, where we had to read books, take tests on them and then we’d get points. I was dreadfully behind on that. My teacher was just like, “It’s understandable why you missed that. We’re just going to excuse you.”

While I was recovering at home, we had my friends and their families sign up on this sheet, and they would bring me food. They would bring meals. My mom could just put those on plates and we could all eat those instead of her having to make stuff, so she could take care of me. That was great because it just made me feel good that my classmates cared about me.

Then I had to leave those people whom I had known for, some of them for those nine years that I had been there. Then I went to this gigantic high school where I knew nobody. I had to get this thing called a 504 plan, where I can leave classes early. If I needed to, I could get an extra set of books, take those home. I really only used it to leave class early.

I always had to worry, I still have to worry about this, I’ll explain it to my teachers that I need to leave class early. I’m like, “Hey I’ve got this thing. I’ve got to leave early.” I don’t have to explain it every day. Then I’ll get there, and I’ll have a sub, and I’ll be like oh great. I’ll have to explain that to them. They’re always usually very good about it, and they’ll be like, “Oh, okay sure go.”

It gets better honestly because sometimes you’re going to struggle with it. You’re going to be like, I’m sick, I can’t do a lot of things, this kind of sucks. For me, I was a cheerleader. When I started subq, my condition started declining. I couldn’t do that anymore. I was really upset about it, but then I realized I could be a secondary coach, so I could hang out with the cheerleaders, do some of the dances, teach some of them the moves. I could be there, but I just couldn’t be up on stage doing all the moves. I could help with these kids. That’s what made me really happy.

It’s going to suck at times, but it does get better. Do what you can. Let’s say you like soccer, or sports, or something active, you can find new things that you like. For me, that’s like reading and writing. I can sit and do something calm. You have to find stuff that will fit your illness, and stuff that you can actually do without overdoing it. I think that’s part of my problem. I’ll do something, and I’ll be like, “Oh yeah, I’m fine. It’s whatever. It’s cool.” Then later in that day I’ll be like, “Yeah, I’m exhausted.” Don’t overdo it.

Learn your body. Know when you’re doing too much for yourself. As you get older, you might go into high school, and you’re going to meet some mean people. They’re making fun of something you can’t control. That’s really low for people. That’s not something anyone should be doing. Try not to let it bug you. My mom says, you have to grow duck feathers. Water can represent mean comments from people, or things in your life that are coming at you, trying to bring you down, just get duck feathers and let it roll off.

My name is Abby Sherwood, and I’m aware that I’m rare.

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