I'm Aware That I'm Rare: Julie Scott


Julie Scott is a pulmonary hypertension patient from San Diego. She is also a co-leader of the San Diego PH Support Group on facebook. In this episode Julie discusses her diagnosis and details why she participates in multiple PH clinical trials.

Transcript:

My name is Julie Scott. Born and raised in San Diego.

I used to run a lot. Years and years ago back in like ’99, part of 2000, I was a meter reader for San Diego Gas and Electric and I was noticing on my routes, my heart was like going really fast and I thought it was anxiety from the dogs. So this is like 2000, I notice something’s wrong and shortly after that, I started passing out. When that happens, it’s like, what’s going on? Why am I passing out? So, you go see your doctor. Your doctor is like: “Well, you’re running, you’re doing all this stuff, you’re exercising.” Yeah! Like, “Oh, we’ll get to the bottom of it.” You know, neurologist, asthma doctor, finally got to a cardiologist… I couldn’t understand a word the man said. Something about the right side of my heart, blah, blah, blah. But nothing could be done.

Fast-forward to 2004. I passed out in front of my husband and he called 911, and I ended up in the hospital. Between all those doctors, they gave me my diagnosis and I go, “Oh my gosh! There’s a name for it!” I was so happy there’s a name. He’s like: “It’s no good.” I’m like: “Oh, okay!” Well, I was just still ecstatic there was a name for why I was passing out and why I couldn’t breathe and why I couldn’t hike and why I couldn’t run anymore.

Anyway, I went home and Googled it, like everybody says you’re not supposed to do. It wasn’t good, but I did get a referral to the specialist here at UCSD in San Diego and they were hoping to get me into one of two doctors there. They got me in with Dr. Rubin. He basically saved my life. He asked me to do the trial for the inhaled medication. I was very thankful for that because, you know, I was threatened a couple of times with that pump and that scared me, and knock on wood, I still haven’t had to be on that.

I was scared for sure. I didn’t know what was going to happen with it, but I was excited at the same time, too, because I wanted to get better. I think my pressure, you know, when I was diagnosed, my pressure was close to 100. It was like 93, 96, somewhere in there. I know I’ve seen it in my notes.

When they did the trial itself for the inhaled medication, it actually happened during my heart catheterization. So, I actually took my first inhale of this medication on the table, which was pretty cool because we watched my numbers go down. The mean number went down 10 points, which was pretty darn cool to watch. After about 10 minutes, it went down. So we knew it was working.

The first pulmonary hypertension conference I went to was in Indiana. They had the study room. I talked to everybody and got involved in some studies. Two ladies from the NIH were there. I talked to them. I told them I’d be very interested in coming out there. I also have relatives that live in Maryland, so it actually kind of was a two-for-one deal there, because they just flew me back a couple days later so I could go visit my cousins out in Maryland. So, it worked out really nicely for me to find that study because they fly you out; they put you up in their lodge; and they fly you back. So it was a pretty cool deal. The first year I went, last year, I went in January. It’s once a year. They’re studying 10 years of history of pulmonary hypertension on patients.

I just think it’s really important to participate in trials because if people didn’t participate in trials, how are we ever going to get closer to the cure? How did we ever get away from just having pump medication? I’m always fascinated with medicine and medical and seeing all the tests that are run anyway. I mean, they said, it was kind of funny that my heart actually works better if I’m moving. I’m a weird PH patient. I’m better when I’m moving than when I’m sitting. It’s kind of strange, because if I’m sitting, my oxygen drops. I’m completely opposite of everybody else.

Had it not been for the study, because they did a specific test through my arteries and stuff and it showed having a partial blockage on the left side, not heart attack yet, but you know, I have to be careful. There’s things I found out back there about my health and stuff that I didn’t know about before and I just find that really, really intriguing.

I just think it’s good to participate in these things, because eventually it’s going to lead to a cure or better treatments for all of us. That’s why I do it. Don’t be afraid, because you might find something that works better for you than what’s working for you now.

My name is Julie Scott and I’m aware that I’m rare.

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