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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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Kayla Dunlop - phaware® interview 363

Nov 23, 2021

Kayla Dunlop is a pulmonary hypertension patient from Southern California.

In this episode, Kayla discusses being born with a rare condition called giant omphalocele (GO), the challenge of adjusting to life on oxygen 24/7, and how she is using her creative spirt to make jewelry to raise funds and awareness for pulmonary hypertension.

Hi, my name is Kayla Dunlop, and I'm 28 years old. I'm from Southern California, and I'm a PH patient myself. My childhood was different because I was born with actually a rare condition besides PH, that was later on, and it was called giant omphalocele (GO). So that's where all your organs are outside of you in a jelly sac, and they had to push it all back in. So that caused a lot of health issues throughout my childhood, like club foot, ASD, those were just the major ones, scoliosis, so I have rods in my back. So all this stuff, they had to correct throughout my childhood. So I was in and out of the hospital all the way probably until middle school.

Then when it hit middle school, is where I had a seven year gap of hardly any medical issues. If there were, they were very small that I could deal with day to day. But when it hit August 2013, it was when I got diagnosed with pulmonary hypertension. Then that's where it all began, my PH story. It was hard. I'm very thankful that I had great family support. My family has always been close, and probably because of my medical issues, we became closer because we had to stick together. I have a younger brother, three years younger. He actually had to wait in the hospital from time to time while my parents were visiting me. So it was like we were all like a support system for each other, for which I'm thankful.

My friends, they come and go, but I did have some friends throughout my childhood that stood by my side, so that helped a lot. I always had a positive outlook on life. Probably, I get it from my parents, that you kind of just have to learn to try to adapt and push through. That was always my mentality, that I need to get through this because I need to do something next, the next stage. So that's how I thought, and always had a positive outlook, and that helped a lot too. They don't know how or why I got pulmonary hypertension. I have kind of my own theories because I have restrictive lung disease from the scoliosis, so I have one lung larger than the other. So I'm thinking maybe that could've caused it, but they never really said why I have PH.

How it all started was when I was walking in the mall one day, it was a hot day, and I kind of get overheated easily anyways, so I was thinking, "Oh, maybe I didn't drink enough water or anything like that." But in the mall, I was walking around with my mom. And all of a sudden, I got shortness of breath, like I couldn't get a grasp on my breath. I've never felt that before in my lifetime, so that kind of scared me. I was like, "Maybe I'm hungry, thirsty." So I sit down. It got a little better, and I was able to walk back to the car, and so that was fine. Then that night, I actually woke up in that morning, gasping for air again. I've never had that happen to me while I was sleeping. My mom was like, "Something's wrong. We need to go to the doctors." My mom's very hyper aware of that kind of stuff because of my medical issues.

So she was like, "I'm going to take you to your primary doctor and we're going to get this solved." And this is at age 20. So we go to the primary doctor, and they're like, "Oh, you have low oxygen stats," and they're like ... But I'm talking, I'm walking, didn't really have shortness of breath, but it was just like trying to catch my breath a little bit, but not as bad as I felt like before. But they're like, "No, you're in the 60s. The oxygen stat's in the 60s." They rushed me to the ER in an ambulance. But I was still walking, talking, which was really weird. So I get to the hospital, and they think it's an asthma attack. So they're giving me all these breathing treatments, and the nurse is like, "This is not working." They don't know what's going on. They're like, "It's not helping you at all."

So the doctor that was on call there is like, "Well, we're not sending you home until we know exactly what's going on." So I was there in the hospital for about a week, doing all sorts of different tests to kind of narrow down what it was. Then they did an echo cardiogram, and they saw some of the pressures were higher in my heart. Then to finalize what they suspected was PH, they did the right heart catheter, and that determined that I have pulmonary hypertension, and they put me on oxygen. They sent me home with oxygen. Ever since then, I've been on oxygen 24/7.

At first, I really didn't understand the severity of it. I thought maybe I would be on oxygen, oh, maybe a week or two, and the medicine would kind of solve the issues. You know? So I was like, "I'll just be back to normal," kind of thing, because I never heard of pulmonary hypertension before, or what it was, anything like that. I was kind of in denial, which I've never really been since the other medical issues because they were kind of straightforward. This was kind of more confusing of how to deal with it. So I kept asking my parents after I got out of the hospital, I kept asking my parents, "Is this really happening to me? What is this?" I had to keep asking them, "Why do I have this? What's happening? I thought my health issues subsided already. Why am I dealing with this again, another thing?"

So it did take a toll on me, for probably I would say about a month of trying to get adjusted to it, because I was on oxygen. I had to go back to college, and I knew if I stopped that and waited maybe next semester to go back and kind of get it adjusted, I knew that I wouldn't go back, probably because for myself, I have to keep reaching those goals. Even if they have to change a little. So it just helped to kind of get back in that normal routine, even though I had to change it because I had to drop two classes out of three. I had to be on oxygen 24/7. I had to carry the portable oxygen concentrator with me. Thankfully, my parents helped me pay for that because the insurance would take forever to get one. It was just a whole new way of life of looking at it, and especially in my 20s, because I thought all the health issues were kind of over with.

The hard part was kind of probably being around my peers, because I felt different. So I had to gain my confidence back a little bit of, yeah, I am different, but I still have the right to be in school, and I still have the right to accomplish my goals. So that took a little time to kind of get over that. Also, the noise of the oxygen machine kind of bugged me at first, because it was a little bit louder and something that's always with you, so in those quiet situations, like when the professors would give lectures and people are super quiet, or test time, I kind of felt a little self-conscious. So it did take time to kind of get used to that. By keeping going to school, it did help, and be in those different types of situations helped me kind of overcome that over time. It did take time.

I still have some instances of going out in public and be like, "Oh, people are staring," or stuff like that with the oxygen because you can't hide the oxygen. It's right there. It was just a learning curve for sure. I would say my self-confidence has gotten a lot better over time with the support and just living with it, basically. I would say about six months after, I wanted to kind of turn the negative into a positive and give back to the PH community, so I decided to start a small jewelry fundraising line. I wanted to spread the awareness and raise funds for the PHA, since I knew that was an organization that funded research. So I started that, I went to some craft fairs, tried to spread the awareness about PH. And I met a lot of great people along the way. They were open to share their own stories. I actually did meet a couple people that were touched by PH too.

So it was very interesting to go through all that, and know that I'm kind of doing my part on trying to give back to the PH community in some way. So that has really helped too, because it is a creative outlet to make the jewelry. I know it's raising funds and giving awareness. Now I'm at Cal State San Bernardino, so I'm getting my BA in child development. I got my AA in early childhood, and now I'm doing my BA in child development, so I have about a year left of that, so I'm really happy about that. It's been a long road, but it's well worth it, so that's what I'm focusing on now. I'm really happy that I'll be accomplishing one of those big goals of mine that I've set for myself way before having PH.

One thing is of course, is to try to have that support system with you. I know that's hard for some people to have that. So if you do have to reach out and create your own support system, I would advise you to join your local PH support group. I did that right after I got diagnosed. My doctor has been part of it, my PH specialist. I started with them right after I got diagnosed, and I've been involved ever since. I help run the activities for them, so the PH patients can have a creative outlet and not always focus on the medical side of it. I really enjoy that, and that's where some of my funds go from the jewelry line too, to help fund the activities. I would definitely say try to join your local PH support group and see if that's the right fit for you, because it does create a good community for you to have people that understand what you're going through.

Also, I would say look for Facebook PH support groups online. Those have helped a lot. I met a lot of young PH patients through that, that I still keep into touch with today. You can get really good advice from them, and it's been a really great part of my support system too. Also, try to find a hobby that you enjoy, because then that kind of takes your mind off of the medical condition that you have. It kind of just clears your mind, and try to make sure you focus on something fun that you're doing.

Also, if you have a chance, I started with pulmonary rehab, and that has really taught me how to have a good exercise routine to exercise safely, because they teach you how to do that. I did that right after I got diagnosed too because my dad actually researched on what you can do to help have better heart and lung functions. So he actually found out about pulmonary rehab, that they offered that. Then I asked my doctor about that, and he signed me up for it. That was a really good program because now I can do the treadmill on my own, and make sure I do that safely, and then walk around my neighborhood. Any exercise helps too. If it's little, whatever works for you, it helps a lot to keep your body moving.

My name is Kayla Dunlop, and I'm aware that I'm rare.

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