I'm Aware That I'm Rare: Rachel Abraham

Rachel Abraham is a freshman at American University in Washington DC who was diagnosed shortly after her birth. She is originally from Mamaroneck, New York and believes that just because she has PH doesn’t mean that her lungs can stop her from being a stage manager and doing what she loves. In this episode Rachel shares her experience and tips for patients transitioning to life at college.

Transcript:

I’m Rachel Abraham. I’m 18 years old from Westchester, New York, and I have had pulmonary hypertension, essentially, since I was born. The way my parents explained it was I was born, they cut the umbilical cord, I turned blue, and everyone started freaking out. There was some commotion, and not long after, I was diagnosed.

For the first couple of years of my life I had a central line. When I was 9 or 10 that was taken out and from then on, I have been exclusively on oral medication. I wasn’t the normal kid; I was the sick kid in elementary school, if you will. If you can’t see, I just did air quotes. So I didn’t learn how to ride a bike. I didn’t learn how to swim. I didn’t learn how to do all of these normal kid things. I always sort of had this little buddy that was attached to me at all times.

Then I woke up from the surgery to get said central line removed. I can vividly remember thinking, “Wait, this is weird.” It was a big moment in my childhood of going from constantly being tethered to this line to, obviously, you know, not being as tethered and being able to do more; whether that be getting in a pool or any of the normal kid things like being able to down a slide. It was now, way easier. Getting dressed was way less involved. I didn’t have to thread a central line up through my shirts or anything. So that was a big and wonderful transition, and even though it was almost ten years ago now, it had an effect on me.

At first it was a little weird, because when you’re in elementary school and you’re socialized to be a person. I was always socialized for everyone to sort of know I was this sick kid, because, you know, no normal kid walks around with a central line sticking out of them. In middle school and high school I’d be like, “Hey, can we take a lung break because I can’t walk long distances. I can’t run around.” I still remember getting very weird looks, and me being very confused. I didn’t realize that there had to be extra explaining to be done in regards to my lungs and that whole issue, and that definitely took some getting used to.

And obviously, I’m still getting used to it because I was thrown into a college campus seven months ago, and no one knew that I had PH, and no one knew that my lungs didn’t work the way they were supposed to. It was having to re-explain and reteach everyone that like, “Hey, I can’t walk as fast as you. Hey, I need to take lung breaks.” It’s always a learning process, and I think I’m still working on said learning process. But it is very different from walking around with a backpack and being tethered to a central line. I like it better, even if the explanation can be kind of annoying sometimes.

As I approached the college process, I realized that for me trying to find a school was going to be a lot more difficult than for my friends, because I had to take into account, “Where’s the nearest medical center? Can I get around the campus? How’s the accessibility of the campus?” I had to take into account where the school was. Would it be too cold? Would I not be able to get from point A to point B without turning blue and getting under-oxygenated?

There were quite a few factors. It was touring schools, and even before touring schools it was sending the admissions office an email being like, “Hey, can I get a wheelchair for this campus tour?” Or, “Hey, could I get a private campus tour at my own pace?” It was talking to the Academic Support and Access Center once I got into AU [American University], which is where I am currently.

It’s making sure that I have a single room because I have a concentrator that’s loud and I sleep with it. It’s making sure all of my medicine is ordered. It is a whole lot of moving parts, and all of them have fit together quite nicely. The transition was great and way, way easier than I thought it would be. And I’m not going to lie: There were some rough patches. But I think every college freshman has rough patches and I don’t think mine were because of PH at all, actually. I think it was because I’m a person and I was transitioning from my home to school. It was a transition and there were more moving parts than the average person my age had to go through, but it was not so much more overly involved that it was impossible.

I have a couple of pieces of advice. My biggest one is do not let the fact that you have some invisible disease stop you from doing what you want to do and doing what you love. Yeah, you are going to have a whole lot more work to do than your friends. You’re going to have to go on college tours for everything. You are going to have to take in temperature, campus size, accessibility, but that should not stop you from going to college and living your dreams and doing all that. That’s my first piece of advice.

My second piece of advice is for once you get to college. If your PH is not visible and noticeable to the naked eye, tell people you have it. And you’re going to have to explain it a bunch of times. There are going to be a bunch of people that are like, “Oh, my grandpa has asthma,” and they’re going to be like, “That’s the same thing my …” It’s not the same. You deal with it. You be polite about it, because you know they’re just trying to relate. Even if you don’t want to be known as, “Hey, that sick kid,” you should tell them anyway. Because when you’re late to class because you can’t breathe or you have to do this, that, and the other things because of PH, you really don’t want to have to suffer repercussions because you did not let either the university, or your professors, or your friends know ahead of time. Even if you could keep PH under wraps, don’t. Because if you try to, it will come back and bite you in the butt.

My name’s Rachel Abraham, and I’m aware that I’m rare.

Learn more about pulmonary hypertension at phaware.global. Never miss an episode with the phaware® podcast app. Follow us @phaware on facebook, twitter, instagram, youtube & linkedin Engage for a cure: #phaware