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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