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

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Dawn Meador - phaware® interview 367

Mar 15, 2022

Long-term pulmonary hypertension patient, Dawn Meador, discusses navigating her PH during a pandemic as well as why she and her husband chose to adopt after her PH diagnosis.

Dawn Meador:
Hi, I'm Dawn Meador. I am from Springfield, Tennessee. I was diagnosed with PH in March of 1998, so I've been living with PH for 24 years. I had a nine month old daughter at the time, and I had noticed I'd been having a lot of trouble breathing. I went to Walmart one day with just me and her. She was so small, she was still in the pumpkin seat. So I carried the pumpkin seat into Walmart and I got into the store and thought, "Boy, I can't breathe. I'm really out of shape." Carrying the pumpkin seat, she doesn't weigh that much. I got the seat set in the buggy, walked back to the dog food aisle. My heart was just racing, beating hard enough that you could kind of see my shirt moving and I could not catch my breath. I knew something was wrong.

The next day, she had a baby well check at our family physician and I questioned him about it at the time. When I asked him about it, he looked me over and did some tests and immediately sent me to a heart specialist. From that heart specialist, they did an echo and several other tests and discovered that it was PH.

I had never heard of it before and I was basically told, "Hey, you're one in a million." So, this wasn't really the lottery I wanted to win, but okay, it's the cards I was dealt. So what do we got to do to deal with it? Because at the time, I had a five year old son and a nine month old daughter and I thought, with everything that they were all telling me about it. Then they were giving me the statistics of ... back then it was, life expectancy now that you've been diagnosed is only like three to five years. I'm like, "No, God's going to let me live to see my kids grow up."

I was on oral meds for the first 14 years and then all of a sudden they just stopped working. So they put me on the subcutaneous pump with Remodulin®. I was on it for about a year. And then they tried me on the pill form of the Remodulin®. After about eight or nine months, they put me back on the pump. So I've been on the pump for almost eight years now. I thought, "Well, I've made it 14 years. Is this the point that everything starts going south?" The pump is inconvenient, it's painful. But my feelings on it is, it's doable and it keeps me around just a little bit longer. So I'll do what I have to do to be able to spend time with my family.

They did a lung biopsy to see if they could pinpoint what caused my illness and determined it to be idiopathic. So there was no known cause, it wasn't hereditary. It wasn't caused by the pregnancy or anything like that. It was just a fluke, that one in a million.

For a lot of years, I kind of dealt with it on my own. And then I finally got into a support group on Facebook and got in touch with other PH patients. At that time I thought, "I'm the only one dealing with this. Nobody truly understands what I'm going through." Then I started talking to other people that do have it and realize there are more of us out there. There's not a lot of us, but there are more of us out there. We kind of got to lean on each other because we all know what the other one's going through and nobody else really does truly understand.

When we moved to Virginia, I got in with my new doctor there. And they talked me into going to one to the support group meetings. The very first meeting I went to, it was meant for me to go that meeting. There was a young girl that was 19 years old that had just been diagnosed like a couple of weeks before I got there. She was totally devastated. The whole meeting, she just was in tears the whole entire meeting. Something told me, "Go up and talk to her after the meeting was over with." So after the meeting was over, I went and talked to her and her mom, and we have stayed extremely close ever since.

That's kind of what has kept me going is if I can give somebody else support and let them know, "Hey, yes, it is scary when you get this news that, this is what you've got. But if you go online and start reading everything that the web MD says, it terrifies you even more." I'm usually telling everybody, "Don't go read the website. Talk to somebody else that has it because they can give you better information than what you're going to get off those website. When you read the websites, it's going to scare you to death." If I have the opportunity to give somebody a little bit of, "Hey, it's going to be okay, you're going to make it through this. It's going to be right." Then that's what I'm going to do.

At the beginning, it probably brought us closer together. After a few months, the newness of me being sick wore off and it actually kind of ... we had problems to begin with, but it kind of ended the relationship. We ended up divorced. About a year later, I met somebody else. He swore that he could handle it. We got married, nine years later after realizing that he really didn't support me whatsoever, along with other issues, we got divorced. I had kind of given up on anybody else and decided it was just going to be me and my kids and that's all that this was going to be, because nobody else could handle dealing with me being sick.

Then I met my husband, which was a total fluke because at the time, I had swore I was never getting married again, I was never going to date again. I wanted to do with it, I was over it. I needed to take care of my health and my kids and that's all I cared about. A friend of mine talked me into just meeting him.

On the very first date I told him, I said, "I have two kids. I'm in the middle of my second divorce, because I have a health condition that is called pulmonary hypertension. It's a lung disease and it will one day either require a double lung transplant or take my life. One of the two. If you can't handle this, then we're just going to call this friends and we'll go on with our dinner." His next response was, "Does the illness define who you are as a person?" I was like, "Well, no." He said, "Then why should I have a problem with it?" He said, "You can't help that you develop to this illness, so why should it cause me to not want to be around you or with you because of it?" We had been together ever since, because he was kind of the blessing that I needed at the time.

We have a child together, she is actually adopted. Everybody always asks me, "If you've had PH for 24 years, how do you have a 10 year old?" She is adopted. We actually finally told her last year that she was adopted and she's completely fine with it. It was ordeal It terrified me, had me stressed out, because I had two kids, he didn't have any kids and he wanted kids. He wanted to be able to raise one, as well. My two, by the time we met, my oldest was 17 and my youngest was 13. They were kind of pretty much grown. And we got blessed with a brand new baby. We were there, watched her come out and everything at the delivery and she was handed straight to us. She's been ours ever since and been ours from the get go.

It's not always easy, especially with him being in the Navy, because there's a lot of times that he's not here and he's not here for several months. You just kind of have to deal with it. It's hard because there are days that you think, "Okay, I can't do this. I'm sick and I feel like somebody's just ran over me with a truck." But then you stand up, you smile and you say, "I got this." You suck it up and you go on and you deal with what you got to deal with. None of us asked for this disease, we just developed it. The only thing you can do is you can sit and wallow and self-pity over it. Or you can live life to the fullest and do what you can while you can.

At the beginning of COVID when they first started coming out, talking about it and how everybody was getting sick. For like the first three months, my husband was bound and determined, I wasn't leaving the house, because he didn't want me catching anything. Because with PH you are immunocompromised.
For a PH patient that already has issues with their lungs to develop something such as COVID, you're pretty much in the hospital and more than likely on a vent because your lungs already compromised and that's the first thing an illness with your body is going to attack, is your lungs. Because it's the weakest point.

For the first three months, he pretty much was, "Okay, make me a list. I'm going to the grocery store. I'm going to Walmart. I'm going to go do this." Everybody got to laughing at me because I would tell them, "Oh, I got to go for a ride, I'm starting to know what it's like to be a dog." Everybody was like, "What do you mean?" I said, "Well, I'm at home all the time. Just to get in the car and go for a car ride. I just wanted to just sit there in the car and go for a ride, because it got me out of the house."

For the first few months I was a little stir crazy. Then finally I got him to realize, this isn't going to go away anytime soon and I can't stay confined in a home until all this is over with, because it's going to drive me insane. So I put on my masks and I was very cautious. If we went anywhere, it was in and out pretty quick. It's not quite as bad as that now. I'm cautious, but I'm not crazy. I don't go overboard like some people do. Which everybody has their own way of dealing with it. It's not something that's ever going to actually go away. It's here. But we have to learn to live life and be cautious, but don't be stupid. But enjoy life, too. If we sit still and wait for it to go away, you're never going to enjoy life for who knows how many more years. Who knows how many more years until it actually goes away.

My advice is just have the faith and stay strong. Know that whatever comes your way, how you decide to face it is going to depend on how the results come out. But for me, I'm a full believer that there is a higher power that's in control of everything. My faith is truly the only thing that has kept me going through all of this, between the illness, COVID, anything that's ever come my way. Living with PH is not the easiest thing in the world. You have so many things thrown at you between the medical issues and the medical bills, that's a whole another story in its own. Then the prescription costs, that's another whole other story. It's a struggle and it's very stressful. For a PH patient, the stress is the worst thing they can deal with, because the stress just makes the PH that much worse. I have always just put my trust in faith in Him and just told myself, "It's going to work out, no matter what it's going to work out. It's going to be okay." That's how I deal with all of it.

I'm Dawn Meador and I'm aware that I'm rare.

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