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

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Danny Thomas - phaware® interview 408

Mar 21, 2023

In this episode, longterm pulmonary hypertension survivor, Danny Thomas, discuss transitioning into adulthood with PH, navigating relationships, fatherhood, and the power of a positive mental approach to his rare disease.

My name is Danny Thomas and I am from the Akron, Ohio area. I was diagnosed with idiopathic pulmonary arterial hypertension when I was a 12 years old. As a kid, I was a pretty healthy looking child. I was athletic. I was small. I was skinny. But whenever it came to doing anything endurance related, long distance, if I had to run... My dad would make me and my sister jog to the school down the street. I was about eight or nine at this time and I just couldn't keep up. A couple years later in gym class, I couldn't keep up with the other kids. I would fall behind. That triggered a lot of questions from my parents and from teachers.

We ended up taking me into the doctors and starting the process. Luckily, I had a pediatrician that was very invested in my health. He saw some things weren't right. When they did an EKG, he noticed some irregularities. At this time, we had just moved back to Ohio from Iowa and we were an hour south of the Cleveland Clinic, one of the top hospitals. Luckily, he connected us with someone up there. Thety decided to get me a right heart catheterization. They determined this was pulmonary hypertension. I immediately got started on the pills at that point in time.

As a young boy, it's not necessarily the typical target demographic for this disease. It was difficult to get connected or to relate because there was nobody else that was dealing with this kind of stuff. Middle school into high school, it was tricky to navigate that process. But like any other boy, I pushed myself as hard as I could always, no matter what. I still played on the basketball team as a kid. I still played as hard as I could out outside of school with extracurricular activities. I just pushed myself. Whether that was good or bad it has to be determined, but it definitely kept me active and healthy to an extent. I never really let it affect me or to try not to let it show at that point in time.

As I got older, closer to my high school years, I was lucky to have a good family. I had parents that let me kind of decide what I wanted to do. They weren't hovering around me all the time, worried about what I was doing. They kind of let me handle my activity. That played a huge part in I think my ability to just navigate my disease. I had a lot of freedom to still do the things I wanted to do to, again, kind of let me gauge when it was time to sit down and take a break. I think it was crucial to me developing somewhat normally as a kid and into adulthood. They weren't constantly worrying about every single little thing I was doing or not letting me go out and explore and be a kid, which I think is a concern of a parent. You don't want your kids to go too hard. But they were very understanding that I still wanted to be a normal kid. I wanted to play basketball. I wanted to go off my friends. I wanted to stay out late and do all that stuff, and they gave me the ability to do that and help me manage the disease at the same time.

When I was 18, about halfway through my senior year of high school, the doctors determined that the oral meds weren't accomplishing what we wanted to see with some of the results. So at that point, I went on IV Remodulin. We started with sub-Q Remodulin first and that put me out of school for about a month, because it was just so intense. The pain was excruciating. It really just knocked me out. So then we switched to the IV version of Remodulin. It was manageable, but it was a huge adjustment for a kid in high school who's now hooked up to a pump.

When I first started, I was on this CADD-Legacy pump, which a lot of people are familiar with. It's huge. So you're trying to be some cool high school kid walking around with this huge thing in your pocket. It definitely is an adjustment you have to learn how to make. Eventually, we switched to a smaller pump. Being a kid with a tube in your chest, you just got to adapt. You got to learn what you can do and what you can't do and just live life accordingly and that's what I continued to do. I finished out my senior year with my friends. I graduated and went to college and was able to kind of smoothly transition with the medications and with the pumps. Being limited, it still worked out pretty well.

I went to a local college here. It was almost a seamless transition from high school. You still had a lot of your same friends that were there. But as I got older and gained more independence, I was mixing the drugs myself. My mom was helping me order everything and making sure I had everything I needed, which again was a huge blessing to be able to just rely on her for that stuff. Couple years later, I did actually live on campus at a college here about 35, 40 minutes away. That was very interesting, but crucial transition into my development. As a young adult with pulmonary hypertension going out and now in a dorm room with a roommate, changing your medicine, sitting down at your desk, setting up a sterile environment so I can be a chemist for 30 minutes and hook everything up, took some learning and some adjusting.

It was incredible. Some of the best times I had was that time of my life. I think it was just because I was finally able to really experience some independence as not only a young adult, but a young adult with pulmonary hypertension who's dealing with this, who's taking medications, who's mixing this medicine, who's interacting with people and learning and growing a career. That experience of going to college was incredible and it really catapulted me into a lot of experiences into young adulthood.

Nearing the end of my college experience, I was 21 years old. My girlfriend at the time (who is my wife), I had met her as I was in college at this time. I played music at a local coffee shop, open mic, and I met her. We started dating. Then at 21, I actually was diagnosed with type 1 diabetes alongside the pulmonary hypertension. Unrelated, but it was a huge adjustment I had to make lifestyle wise.

Having pulmonary hypertension, you have to worry about a bunch of different things, what you're putting in your body, what activities you're doing. Getting diagnosed with type 1 diabetes, just kind of threw a wrench in things and forced me to make additional lifestyle changes. I was completely insulin dependent. I still am. I count carbs. I really have to make sure that stays on track, otherwise it can affect the pulmonary hypertension, if my type 1 diabetes is not in check.

I was dating my wife at the time. I had just finished college at 21. We were getting engaged and I got my first real job offer at that point in time, and so that was really exciting. It was not easy, obviously, to navigate the relationship scene when you are, again, a proud 19, 20 year old guy. The first thing you want to talk to your girlfriend about is not your disease or your limitations or the fact that there's a tube in your chest. That was definitely, again, something that I kind of felt alone in and just really had to dig deep to figure out how to communicate that to another person. Luckily, my wife and girlfriend at the time was just overly understanding about my circumstances. The trick is you got to really get them to like you first, and then you drop the pulmonary hypertension bomb. That way it's harder for them to back out once they figure it out. I did trick her a little bit. I had the guitar. I had the music. I was able to woo her before that, so that way when I did drop the PH bomb, it was harder for her to back out. She was kind of stuck at that point. She had no choice, and so we dated for three years. It was incredible. She helped me along the way.

My mom and her have this really cool relationship to where my mom kind of handed her the baton as being my person, which again is hard when you're a young guy. You rely on your mom and then you rely on your girlfriend -- your wife. That was really cool to see them communicate and transition me. So now, Caroline's kind of taking the responsibility, to helping me out and learning all the intricate details that is pulmonary hypertension. I was very blessed to have found my wife. To this day, she is the most crucial person in my development and my ability to maintain and stay healthy and positive throughout the process.

Growing up with the disease, they kind of tell you, "Hey, this medication might affect you later on." We were told when I was probably 13 or 14, a couple of these medications I was starting, it may affect my ability that to start a family later on in life, that the medications were so aggressive they could affect that. There was a lot of doubt that the thing I wanted my entire life was a family and that was maybe not an option as we were told. However, when I got older, by the grace of God, me and my wife, we had our first son in 2013. That was just an incredible blessing, because it was always something that I didn't know was going to be possible. It was always a dream of mine as to have my own family. That process was incredible. It wasn't without its hardships. At this point too, as we all know, the disease progresses, so I'm not getting healthier, but I'm lucky enough to be able to stay in a point where, again, I'm able to enjoy this process and just see how huge of a blessing it is, because it is very apparent to me at this point. I've lost friends and mentors along this path that were not lucky enough to have that experience.

So for me it's incredible to just be able to witness my wife having this baby, this experience I never thought that I would get, whether it was because I wasn't able to or because I wouldn't be around. It was just a beautiful thing. We have been blessed enough to have three more, three girls after that. We now have a nine-year-old, an eight-year-old, a four-year-old, and a three-year-old. It's just been an incredible journey and I'm thankful every day that I get to look at them that I've been able to experience this. It's an incredible part of my journey.

One of the difficult parts about being a dad with severe end stage pulmonary hypertension is just figuring out how to communicate that to your children. My kids are all very aware that dad is sick, that he has what they call a heart booboo. It is kind of what we've called it ever since they were little. Part of the struggle for me is not necessarily the fact of educating them or getting them to really understand what's going on. For me, as a dad, you want to be involved as much as you can with your kids and their activities. It's difficult to navigate a life to where you kind of have to sit on the sideline a little bit. You don't necessarily get to coach their soccer teams or their football teams. You don't necessarily get to wrestle around with them on the ground every day because you don't want someone's toe catching you in the central line and taking you out or something like that. That process has been difficult, but we manage.

They're all very understanding. They know dad is sick. He can't run around all the time with them. He can't wrestle around with them all the time. So we find other things to do. I've been able to connect with all my kids on another level other than being super active dad. We play games, we play music. Music has been a huge part of our family and of my life. When I was told that I couldn't do sports like I wanted to, I got into music. Music has been an enormous influence on my life and I get to do that with my kids. So you just find other avenues to engage with your kids. You still get to be their dad and still fulfill that role rather than other things that involve strenuous activity.

Most of my time with pulmonary hypertension, the doctors have always kind of seen me as this anomaly. Almost my entire life has been severe pulmonary hypertension, but at the same time, I still function at a pretty high capacity compared to a lot of other people with pulmonary hypertension, with maybe lower pressures. It's been a tricky road because we know transplant has always been on the horizon, but we've never known really when the best time to put that on the docket was. It's always just kind of been there. We know it's there. We know it's going to be an option at some point, but because I've kind of been this weird high pressure kid, but I can still function really well, we weren't really sure when to take that next step. Over the years as things have progressed, I've had my fair share of ambulance rides, hospital visits, very scary situations, luckily enough to persevere through that. We're now at this point where the doctors have kind of decided I'm maxed out. It's really time to seriously consider transplant as an option. I think I've been really lucky so far to have doctors that were willing to wait on that until I felt comfortable.

No one throughout my journey was telling me, you need to do this right now. They kind of said, "Hey, you're going to know when you feel like we're getting close and we're going to help you figure that out. But you have to be comfortable with that." I think lately as I've been getting sicker, I haven't been able to quite do as much. We've decided that transplant is the next avenue to look at. In 2019, I actually started the evaluation process for getting transplanted, did all the testing. We kind of determined that we wanted to wait on the transplant, but we wanted to make sure I was in the system and I was ready to go in case something were to get worse.

So that's where we're at now. I continue to get evaluated about every six months. They just finished an evaluation. We're kind of seeing what those results yield. We’ll continue now to kind of slowly make our way through the process and keep it a close watch on things. You don't want to be too healthy, but you don't want to be too sick. Everyone knows that, it's what everyone's told throughout this process. You want to be sick enough to need it, but not too healthy to where it's early. I continue to stay on top of things and just go through that process.

A key to the longevity that I've been blessed with is attributed to many things, including my faith and my family, and just the support system I had around me throughout this entire process. Staying positive, staying hopeful has been key for me. Again, I have a lot of my faith in my family to thank for that. I was never told that I wasn't going to make it or I was too sick for this or too sick for that. I was given the ability to try things. I was active. I always surrounded myself with people, with friends, with family. I stayed hopeful. I think with this disease that's key. I know it's just becoming more popular, the mental health discussion and I think it's crucial with pulmonary hypertension. You have to have that mentality... Along with staying smart, physically, listening to your doctors, taking your meds, watching your diet, I think it's just as equally important to really make sure that you remain in a positive place mentally, that you remain hopeful. That you talk to people. That you help people, that you ask for help. Really to utilize all the resources available to just make sure you stay in a positive head space.

I truly believe that is a huge part of why I'm still here today. Getting help from people and people telling me that I can do it and constant believing there's something else other than my disease. There's a whole lot more life to live rather than this pulmonary hypertension bubble. That's something I think we all need to keep in mind that there's a huge life outside of this and we just need to keep living it and focusing on that rather than our disease 24/7. So, yeah, if I had one thing to say it'd be to stay positive, stay hopeful, and remember that you're not defined by pulmonary hypertension.

My name is Danny Thomas, and I am aware that I'm rare.

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