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I'm Aware That I'm Rare: Allison Dsouza

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Allison Dsouza shares tips for patients transitioning to life at college and how her experience as a patient led to her decision to attending nursing school at UCLA. Allison is a pulmonary hypertension patient who was diagnosed in her senior year of high school. 


My name is Allison Dsouza. And I’ve been diagnosed with pulmonary hypertension for three years now.

So basically I was a senior in high school, and I thought that I was that lazy overweight, out-of-shape teenager. After a while, my biology teacher said something about how people with heart murmurs would have difficulty walking to their cars. And by that point, I couldn’t really walk to my car. I couldn’t walk upstairs, couldn’t really do much. So, I finally had that epiphany that there might be actually something wrong with me rather than just being a lazy teenager.

So, I saw my pediatrician who ran a bunch of tests, and I ended up finding myself in a cardiologist’s office with him saying, “You have idiopathic pulmonary hypertension, and you need to go to UCSF right now.” At that moment, I asked him, “Can I go to my English presentation that I have in an hour, and then go to UCSF?” And we agreed on that, and I ended up spending quite a few days at UCSF, and started on the medication treatment that I am pretty much on right now.

So, I was a senior in high school, and it was February. So February’s the time where seniors aren’t doing a lot of work. They’re just getting ready for those AP exams and just ready to be done and going to college. So, while I’m at ICU, I found out that I got into Cal Poly SLO. That was my goal. I wanted to go there, despite this diagnosis. And my parents were absolutely terrified because they wanted me to go to the school that was 30 minutes away from home. So, after plenty of arguments, we finally decided that I’d be able to go to Cal Poly SLO, which is about 4 1/2 hours away from home. And fortunately, that transition turned out really well only because I was adamant that I’d have to be independent. Starting from the diagnosis all the way up til now.

From diagnosis, I contacted my physicians when I needed to. I dealt with the pharmacies and basically just cared for myself knowing that college is coming up. I’m going to be independent anyways. I need to learn how to do it now. From that point on, where I was fully capable to order my medications I did. I wanted to prove something that this diagnosis wasn’t going to be the rest of my life. I wanted to continue to follow my dreams.

While I was at Cal Poly SLO, I was a biology major, thinking that I wanted to be either pre-med or pre-nursing. And through that, I realized how much I really hated biology. And I also spent a lot of time shadowing nurses and nurse practitioners, which really motivated me in addition to all this time I spent throughout my diagnosis working with those nurses. It really motivated me to go to nursing school and to go to nursing as soon as possible.

So, rather than finishing my awful biology degree, at least to me, I decided to try to transfer. And fortunately that turned out well, and I ended up at UCLA, where I’m currently finishing up my first year here. UCLA was one of the closest schools that I applied to. My dad actually cried when he found out I got in to UCLA. I believe that was because he was so glad that I wasn’t going to go to NYU. Although UCLA is further from home, it’s actually closer to a lot of very good medical centers, in comparison to being in San Luis Obispo, which was the middle of nowhere basically, at least in the medical field mind. Although my dad didn’t love that I was traveling further from home, he was comforted by the medical system, and that he knew that I could take care of myself after those two years at Cal Poly SLO.

At times, I feel like my diagnosis forces me to prove myself. There was a six month period of time where I was on oxygen 24/7. People looked at me differently. I had a professor ask me, “Hey, do you want to take an incomplete for the class?” “No, I’m still myself. I can still do well in all of my classes.” And that’s the motivation that I have. It’s like despite this diagnosis, I am going to do everything I can to pursue my dreams. And I’m not going to let it stop me.

So, I did a lot of shadowing, which was incredibly important for me to decide which field I wanted to go to. While shadowing, I realized how stressed out the medical students were and how stressed out the residents were. And I noticed the nurse practitioners in their realm where they absolutely love their job. And I also noticed that throughout my diagnosis and following up with the doctors and nurses, the nurse practitioners really played a major role in my care. And I thought, okay, I want to be that person who’s always with the patients and always interacting with them.

I feel like it definitely will add to me being a better nurse because even in my nursing classes, I have such an amazing perspective that many of my other fellow students do not have. A lot of them, they may have had a sick parent or a sick other family member, and they really don’t understand what it’s like to be the person in the hospital bed, the one who’s always being poked and prodded or asked really random questions. And I feel like PH has given me an amazing point of view that I really appreciate.

Some of my main advice for pursuing higher education and pursuing jobs while dealing with this pulmonary hypertension diagnosis is one, follow your dreams. Don’t let PH stop you. Secondly, I would say that independence is absolutely key. Moving away to college is a difficult transition for any student. But if you’re not prepared with dealing with your pulmonary hypertension on a daily basis, that would make the transition even more difficult than it would for other students. Most of the time, professors are extremely understanding and want to help you succeed. I’ve definitely had many professors who are crucial to where I am today. Last thing is, find all the elevators on campus. I’ve went to two schools, both with a lot of hills. And those elevators have saved me on multiple occasions.

Talk to the disability office on your campus because oftentimes they think of things that you don’t think of, like possibly having someone drive you to your classes or having extra time on your exams. And another thing with talking to professors is my line is I really hope I don’t have to use this in the future but I would rather tell you now than beg for forgiveness later.

My name is Allison Dsouza, and I’m aware that I’m rare.

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

Originally published: May 31, 2018
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