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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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Evelyn Melendez - phaware® interview 254

Jun 11, 2019

Pulmonary hypertension patient Evelyn Melendez discusses being diagnosed as a teenager. She details how she came to terms with not being able to become pregnant due to her PH and how she deals with depression and anxiety.

My name is Evelyn Melendez, and I'm a pulmonary hypertension patient. It's 14 years since I've been diagnosed. I was 15 at the time and didn't know that I had all the symptoms in front of me. 

Blue lips, I couldn't gain weight, I couldn't walk to my locker to the gym room. I didn't feel good one day, so the nurse took me home. I went to sleep, I got real sweaty, told my mom I didn't feel good. The next thing I realize, I'm on the floor, and she's crying. She saved my life, pretty much, gave me CPR. I had passed out in heart failure. So I went to two different hospitals before I was sent to Children's Hospital Philadelphia, where doctors kind of knew what I had, but they weren't sure. So they told me like, "We think you have this lung disease, but we're not sure until we do a heart catheterization." At that point, I was so sick and scared out of my mind, it didn't matter what they did. Like, you know, do what you need to do.

Five days later I woke up after my first heart catheterization with a port in my chest. It was terrifying. I felt it because it was brand new, and I remember waking up, and they still had the tube down my throat.  I was so panicked that I ripped it out. I was scared. I already knew that, okay, then I guess I have this, because here it is. I had Dr. Brian Hannah, who retired, but he sat next to me, and he explained PH, and I cried. I remember him saying, "I'm happy you're crying, because that means that you understand it. I need you to understand it." I thought I was going to die. I didn't think I would live to see graduation.

It made me stronger than I ever thought I would be. You want to be this normal teen that goes to parties and has maybe their first alcohol beverage, but you get scared. So I definitely went through a depressed mode and only stayed with maybe five friends that were close to me. It wasn't until maybe about my 11th grade year that I really came out of my shell, and it didn't matter that I had an IV pump.

Everyone knew about in school, and I kind of took over it. I kind of was just like, "Yeah, I have pulmonary hypertension." Like, with the whole thing, you know? That was my way of opening up to people. That was my way of breaking the ice with people and the conversation starter. And then as I got into my twenties, it kind of changed a little bit. Everyone's going to college, going away, and I wanted to do that. I didn't get a chance, just because of not feeling good, dropping out of classes. Not everyone's going to understand you, so I had to come to terms that even though you can explain something to somebody, they're just not going to get it unless you live it, or they're a caregiver.

That was hard. Twenties is hard and as you get older it gets even harder, kind of, because you want to have kids, you want to get married, and you see all your friends doing this and you're still living with your parents at 29 years old. It's not the life that you made for yourself in your mind. So when you get PH, it kind of shifts everything. You're like, "All right, everything's changing. This whole chapter in my life is changing." So you make things the best they can be. I can still adopt, hopefully one day, or meet a guy that has kids. And if I don't, that's fine. Not in my cards. I have enough friends that have kids. I can give them back when I want to.

When you're a little girl, I know I always was like, "I can't wait to get married and have kids." I always wanted to be that housewife, so it was kind of funny that when I was 15 that [doctors said], "You can't have kids." That's one of the main things I was told. "You can't have kids." When it came to being 15, if you're sexually active, you let me know, and we'll have the talk. And I was like, "Okay." I already knew that, and even just being pregnant can kill me. It sucks. There's no other way to put it. But I just keep living. There's not much I can do. I can either get mad, or I can keep living. I can be mad, and I'm still going to have pulmonary hypertension. Nothing's going to change, so I just have to live my life and roll with the punches.

I don't know what's in the future for me. I don't even know what my life will be like in a couple months from now. With pulmonary hypertension, you can't predict the future, and even people without pulmonary hypertension, you can't predict the future. So that's one thing that I have in common, and everyone has in common together. You can't predict the future. It doesn't matter what you plan. Your life is going to fall in front of you with things that you didn't even know you wanted and you needed, or you didn't want but you got it. Who wants PH? But you get it. So you live. You get up every day and you brush your teeth, put your clothes on, and you move it.

I try not to dwell on it, because if I do, it's just going to make me stress out and again, it doesn't change anything. I have my moments, and I move on. If you aren't mentally stable with your anxiety and your depression, you're not going to be physically stable, either. I know I'm an emotional eater, and I can't really have salt with my pulmonary hypertension. So I have to get myself in gear. I could either cry to my doctor all the time, or I can see a psychologist, and I can see a therapist, and I can be an open book and talk to people about my feelings. I've never really had an issue with that, but it was just more like I needed a way to say things and not look in the past and talk about them again, and dwell on them. So I write, and I do my crystal therapy. I like crystal therapy a lot. I like to do yoga. I like to read about things. 

I noticed that it's helped me a lot. Just talking about it and being open with people, and not being so mad. I definitely have a hot temper, and I think it comes from just being mad. Being mad at life, like, this isn't fair. I've noticed from my therapists helping me to cope with things, and seeing a different perspective, is the main thing I'm trying to do.  I'm still learning. So with crystal therapy and doing yoga, and just talking and being honest. It's probably the main thing you can help yourself with, with mental. Don't deny it. Don't deny anything to yourself. Be real, because if you're not real with somebody, they can't read your mind. So your mental state and your physical state is just one big ball. It has to come together, and if it doesn't, it's off balance and you're going to feel off balance. 

My name is Evelyn Melendez, and I'm aware that I'm rare. 

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