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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday!

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  1. All Episodes
  2. Dijon Brewster - Transcript 123

Dijon Brewster - Transcript 123

Dec 26, 2017

Dijon Brewster is a pulmonary hypertension patient who was diagnosed on 9/11/2001.

Hi. I'm Dijon and I'm from Moreno Valley, California.

I was diagnosed [with pulmonary hypertension] actually on 9/11/2001, and it kind of came on me suddenly, but I do remember being that kid in school that was always tired. I got tired quicker than anybody else. I couldn't run the lap. I used to get called "old lady" because I walked really slow. But being a kid, you don't really think about that. You don't want to be different or anything. So, I never really told my parents about it. I remember after I gave birth to my daughter in 1987, I started having all these different illnesses, and just all kinds of stuffs are going wrong, and I found myself not being able to walk long distances without getting short of breath.

But once again, I ignored it. I just took it as being out of shape, because I was a little heavier back then. I got married in 2001 in June and I went to Jamaica for my honeymoon. While we were there, I was having trouble just walking and doing activities and stuff like that. So, when we got home, I went to the doctor, and said, "I'm having trouble breathing," and they just said, "Oh you have asthma. You need to lose weight. You're out of shape." This type of thing. So, they gave me an inhaler, and I would take the inhaler, and it would help for that moment, but then after, I'd be right back short of breath.

At the time, I was working, and so I would park my car from the parking lot to the building. I worked in the hospital by the way, but I was in the accounting department. By the time I would get inside, I would be so out of breath and panting for air, and people would pass me by, "Are you okay? Are you okay?" I'd be like, "No." So, one day at work, I got up to go to the restroom and I just passed out and they called 911. They took me to the hospital. It was a Monday, the 10th of September. I'll never forget, because who gets forget 9/11? That morning I was lying in bed not knowing still what was wrong with me and I heard all the commotion going on. Of course, the tragedy that was happening at the time.

A few hours later, the doctor came in and told me what I had — pulmonary hypertension. He told me I had like two ... he said, "Three to five years to live." I'm like, "Okay." Well, I didn't buy that either. I'm not a statistic type person. So, my husband and I went home, got on the internet, and we found a pulmonologist. I ended up having the right heart catheterization. It was confirmed that it was PH. Fortunately, I was responded to the oral medications, which I was grateful for that because I'm really, really squirmish at the thought of having a tube inserted in my chest. I was like, "Oh my God. I'm going to die." So, they did test me on oral meds, and I did respond, and I've actually been on meds ever since.

I'm pretty stable. I feel a lot better than I did when I was first diagnosed, because then I couldn't turn over in my bed. I couldn't get up and go to the restroom without panting for air. I couldn't do anything. I couldn't put a load of dishes in the dishwasher. It'd wipe me out. Making up the bed. Stuff like that. So, I always worked. Always had a job. When I was told I have this, my doctor put me on permanent disability, and I went into a depression, because I'm used to getting up going somewhere every day, and now I'm at home. My friends and family didn't understand. They were like, "Well, you should be happy you don't have to work."

I'm like, "Who wants to sit in the house all day? I'm used to being out in the world." My husband got me a puppy, something for me to do, so ended up raising some pets and just becoming a housewife. But I still was very depressed, because when you say it to people, it's like, "Well, you don't look sick. Well, you don't act sick." Well, you don't know what's going on underneath. I'm surviving. I'm having a ball, I'm living my life, and I'm not going to quit fighting, and being a part of this is awesome. To be still here after this long, it's like, "Ha ha. You're wrong." My God. It's different.

My name is Dijon and I am aware that I'm rare.

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