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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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Stacey Barta - phaware® interview 233

Mar 29, 2019

Pulmonary hypertension patient, Stacey Barta discusses how she refused to give up on being a preschool teacher after being put on disability following her diagnosis and why early diagnosis and PH awareness is critical for medical professionals.

My name is Stacey Barta, and I'm a pulmonary hypertension patient.

In 2004, I was diagnosed with an autoimmune disease, they kind of went back and forth between lupus and mixed connective tissue disease, and every time I saw a new doctor they'd come up with something else. My husband was military so I saw a lot of doctors. Switched a lot.

In 2009, the rheumatologist I was seeing suggested that I have a pulmonary function test because I was at risk for pulmonary hypertension. That's the first time I had ever heard about pulmonary hypertension. So, I did this echocardiogram and PFT (pulmonary function test) and never heard anything back. So, I figured no news is good news, and that was that. I didn't look into pulmonary hypertension or anything because obviously I didn't have it.

In 2015, I was teaching preschool and had a hard time singing preschool songs and dancing with them, and thought, what is wrong with me? I can't even sing and dance with my three year olds. In August of that year, I had some friends over and started having some chest pain, and my husband brought me to the ER, and that's where I was diagnosed pretty quickly after that.

Looking back at those results in 2009, I actually did have some slightly elevated pressures. It would have been very mild PH at that point. I'm not sure if anything would have been done differently, but I kind of feel like we lost six years there. I have great doctors in San Diego right now, and very happy with the way things are going.

[With] early diagnosis you can start treatment sooner. You can prevent the progression, or at least slow the progression down. I thought maybe I could have started a treatment six years earlier with something, maybe not be on oxygen at this point, or start a little slower with just a pill or two a day instead of the handful that I take now. Also, just having that time to learn more about the disease when it isn't as serious, when it isn't as scary. [When] it's mild, then you can see more of a path to take, instead of, okay, now it's an emergency and we have to do this.

I think it's important to connect with other patients, because they give you the realistic view and not the scientific view. Not against their doctor’s advice, but maybe, "Your doctor won't tell you this but this is what I do." That kind of information is really important. I've heard a lot of people say, "Don't look on the internet." I did look on the internet and it was scary, but once I saw my PH specialist he debunked with the myths right away. He said, "This is actually reality, and don't let yourself get too worked up about what you read on the internet, that's a lot of times old information."

To have a support group and have a strong PH specialist that can tell you what you're reading isn't exactly true, and, "This is what we're going to do for your case,” that's what's really helpful to me. Getting in touch with a support group, I did it pretty quickly on Facebook. I got involved with a support group, and those first few months I was on that support groups all the time, just absorbing the information and trying to learn as much as I could about the disease and how people were living their lives with it.

And now three years later, I'm more of the person answering the post instead of asking the questions. So it's been a great experience to be able to learn that much and then start to give back to the newer patients.

I've heard a lot of people say it, but absolutely get a PH specialist. A pulmonologist or a cardiologist may know of the disease, but they don't know all the ins and outs of the new treatments. So, I absolutely would say get a PH specialist. I am very blessed to have the doctors I have at UCSD. And often questioned why we ended up in San Diego. My husband was military and I was a teacher, and now he's a police officer, and I thought how's a teacher and a police officer going to afford to live in San Diego? Then when I was diagnosed and realized the medical care that was close, I think that's a very good reason to stay in San Diego.

To be able to connect with other people, is a huge thing for me. Having friends who have the disease, and can help you if you're having a bad day, or just say, "We're here for you." Someone you can complain to who can understand it and not just think you're complaining about nothing.

I was teaching preschool and I actually dug my heels in about going on disability. I did not want to stop working, I didn't want pulmonary hypertension to take something else away from me. It got to the point where I was being hospitalized every time I got a cold, and as much as I love my preschoolers, they're germy little angels. I would get sick a lot, and ended up in the hospital a lot. My doctor started to get very uncomfortable with me being exposed to those germs.

I reluctantly went on disability. It was very hard at first, I felt like I lost a piece of my identity. People would say, "What do you do?" I'm a teacher, and I didn't have that answer anymore. So, it was very difficult for me to adjust. Eventually, I did and I started filling my calendar with things during the day while my son was at school. Started feeling more fulfilled, wanted to do more volunteer work, wanted to do more with pulmonary hypertension, and just get out there more. But I still was missing that teaching piece. So I found a company that teaches children in China English online. It's on Beijing time, so I wake up very early in the morning, or I am up late at night, but one on one, I go on my computer and I teach kids English, and they can sneeze on me and it doesn't matter.

It's so much fun. I've rearranged a little room in my house to be my classroom, so I've got class posters up behind me, and I get to go prep all my materials and do all my teacher things, and have fun. I'm actually still focusing on preschoolers. It's very interesting to see preschoolers in China sitting in front of a computer for 30 minutes, but usually their parents are there, so if they run off they can get them back. It's a lot of fun, and I'm really enjoying this new job, and it's perfect, I can pick my hours, I cannot get overly worked, and I cannot get sick, and it's just working out perfect with the pulmonary hypertension.

When I do have to go to ER I make sure I go to UCSD because they know about it. I'm very nervous about traveling and going to an ER where they don't know about it. So, I think awareness in the medical community is extremely important. Awareness within the general public, I think is important just because then you can get the support, and you can get more research, and more treatment.

I've heard some people refer to it as a terminal disease, and I don't like using that word. I like to say that it currently has no cure. But things can change, research is happening and so much has changed so far that there's just no knowing what's going to happen in the future. Awareness is part of that, if nobody knows about the disease nobody's going to give money to help with the research.

I have a pretty awesome doctor. So, I feel like he really put my mind at ease the that first appointment, the specialist. When I was first diagnosed at the first hospital they admitted they don't have the expertise to treat it, and they referred me to UCSD right away. I was a little nervous in that situation. They started talking about a right heart catheterization, which was a procedure that sounded really scary. This is a disease that this hospital can't treat. How bad of a disease is it that a hospital can't even treat it? So that was a little scary. I don't even know that that doctor knew anything else to tell me. Fortunately, I was able to see a specialist right away. He really put my mind at ease about the disease and didn't make me feel like I was on my road to the end.

My name is Stacey Barta, and I'm aware that I'm rare.

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