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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 & Thursday!

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Sherlyn Mersiovsky - phaware® interview 257

Jun 21, 2019

Pulmonary hypertension patient Sherlyn Mersiovsky talks about her long road to diagnosis and how PH support groups helped her cope with her rare disease diagnosis.

My name is Sherlyn Mersiovsky and I'm a pulmonary hypertension patient.

I didn't find out for several years. I kept running out of breath all the time. I couldn't walk with my girlfriend anymore. Just going around the block, I could not carry on a conversation anymore. I would be so breathless. Going on a bike ride to the neighborhood hangout was even hard to do.

We just got a new house, a big one, a two-story. I really wanted that. As soon as we moved in, I couldn't climb the stairs. I had to also change family doctors. I didn't want to drive clear across Houston where I used to go and got a new family doctor. She decided to run me through every doctor after she started doing blood work. I saw hematology. I went back, I saw a pulmonologist. When I went to the pulmonologist, they put the [pulse oximeter] on my fingers, first time I'd ever had one of those. As soon as he did, he sent me straight over to the emergency room. It was mid 80s. I didn't know what that meant.

By the third day, they did a bubble echocardiogram and then on the fourth day they came in, diagnosed me, and told me I had this pulmonary hypertension. I had no idea what this is. They don't tell you much in the hospital. They sent me home. I had a follow up with the pulmonologist again a few days later. I was put on oxygen right away and some other medicines just to see what's going to work. Then he made an appointment for me with my main pulmonologist. I have been seeing her ever since. I follow up with mine once a year now, so he stays in touch to know everything that's going on.

First then he told me when I came back was I had maybe six months to live. I think that was the scariest and hardest part to go through. Because you really don't know anything about the disease. You haven't met anybody who's ever had the disease, and it's so long before you can get into the first [support group]. We only have support group meetings once every other month. So it's not like you've got that coming up right away either.

From the time I was diagnosed in April and saw my pulmonologist in September, the main one, it was right after that that I got into my first support group, and found that things weren't near as dire as you think. Because by their rights, I'm about to die in another month probably. And it didn't happen.

It's good to know that life goes on. But there is maybe not a cure in a certain way. But you can still lead a pretty good quality of life. If it hadn't been for the support group meeting, I don't think I'd been able to handle it all myself at all. They went around the room. Everyone told their own little story, the things that they had been through. I found out that almost every single one of them in there had been diagnosed saying they had three months, six months, less than a year. It was so good to know that some of them in there had had it for 20 years and were still going strong.

Our support group leader, she had a double transplant, lung and heart. She's had it for 25 years. She was there for anything. Everybody was there. People would give you their cards or their phone numbers. They would answer any questions you had. Since I've been there, I've seen the same thing happen like it did when we first went, and it's so nice to let them know this is not how it really is. Don't let them scare you that way.

I have moments, I know that. I get some really bad ones sometimes, but I don't think what I'm going through is enough to actually just make me keel over right then at all. I know that I'll get through it. I'll be back to normal again, and you just keep going. Some days you're in bed for days, not just one day, but maybe even a week or two weeks. There's trips to the hospitals. All of those things are there. You have to watch the medicines. They make you sick. They make you dehydrated. They mess sometimes with your head. Certain things that I like to go do, I can't do like I used to. Can't party a lot anymore. I don't hardly ever drink anymore. It's still nice to have one. I know now it's not going to kill me to do it. That's a good feeling also.

It's not as dire as they make it sound to you. You will make it through. It's not a six month or a one year. It's one day at a time every day, but you'll live. Some of [the patients] have quality of life that is wonderful. I have met people who were in bad shape and started doing their exercises and stuff. You would never know they've ever had the disease anymore. They get off of oxygen. You're not going through all that anymore.

Believe in you. Believe in yourself and that you can do it. There are some things I can't do anymore. I miss working. I really miss going to work every day. I hate being home all the time. But it's wonderful. I got a granddaughter now. I love babysitting. But it is hard, because I can't lift her. I can't chase her all the time. Luckily, she's a good one. And I've got to learn to count on other people, like my husband. I know he thinks I don't listen. But I do once in a while.

I'm Sherlyn Mersiovsky and I'm aware that I'm rare.

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