Jul 13, 2018
Iain Hess discusses his lifesaving double-lung transplant
and his plans for life post PH. Iain Hess is a former pulmonary
hypertension patient from Boulder, Colorado who was diagnosed at
age 5 with IPAH. He received a double-lung transplant on January
17, 2017.
My name is Iain Hess. I was born in Boulder, Colorado. I was
diagnosed with pulmonary arterial hypertension at the age of five
when my doctor in Bolder heard an initial second heartbeat.
At the time, we were about to go to India for a family vacation,
but because of the heartbeat, my doctor said to just go get it
checked out at Denver Children's Hospital just to make sure that
nothing was wrong. So we went down to Denver and we got that
checked out. That same day, I was diagnosed with pulmonary
hypertension. I was put on IV meds.
At first, I was put on a CADD pump. It had to be cold at all times,
so I had to wear a backpack with ice all day. I was essentially
just carrying around a pump on my back all day with ice packs.
Those ice packs had to be changed every six or seven hours.
Throughout elementary school, I would have to go down many times
during the day to get those ice packs re-changed. Living with that
during elementary school, it was normal for me, really because I
was diagnosed so early, but because of that I couldn't do a lot of
things, such as skiing. I could do some stuff, I could still go out
and play football. My health was stable at that point. I obviously
had PH, but it was stable.
Eventually, I was transitioned over to a much smaller pump that
could fit in my pocket, and with that pump, I could do many more
things. I didn't have to keep it cold at all. I was active, I lived
in Colorado, so, I could go hiking for the time being and it was a
big help. Not as scary. With my previous medicine, I had about 10
minutes of half-life, which means the medicine would only last in
my body for a certain amount of time without me fainting… or worse.
With this new medicine, I now had a half-life of four hours, which
gave me a lot of time in case there was an emergency.
When I was in middle school, the small pump really worked for me. I
was able to do a lot of things and my health was still stable at
that point, until about eighth grade. I started to kind of feel my
health start to decline. At that point, we tried increasing the
dose on the medication itself and also increasing the flow of
medicine into my body, but we continued to see that my health was
deteriorating. So once I got out of middle school, my family and I
went on a family vacation to Europe. I didn't know this at the
time, but my parents thought that it might be the last time we
could go together. We had a great vacation, we were in Italy,
France, the UK, we were everywhere, and we had a great time.
As soon as we came back, we had about two days back in Boulder, and
then we had to drive out to St. Louis, because I was about to have
a procedure done called a Potts shunt. What the Potts shunt was
supposed to do is essentially create another passageway for blue
blood to escape so that it relieves pressure on the heart. At the
time, this procedure was very new to the US. It was originated in
France, however very few had been done worldwide.
I had the Potts shunt done in St. Louis. My recovery was not bad.
It was about two weeks, but the surgery itself hurt very much. We
went on another vacation and we noticed that my health, it really
wasn't improving. At that point, we decided there was no other
option besides a lung transplant. I was basically told not to push
myself too much at all because my heart was failing and it was
failing very fast.
My dad and I drove out to St. Louis, Missouri to wait for a pair of
lungs. So essentially for a lung transplant, you have to be in the
vicinity of the hospital, less than two hours away. Obviously,
Boulder, Colorado was way more than two hours away from St. Louis,
Missouri, so we had to move out there. We were in St. Louis for
about two months. All I did was stay in an apartment watching TV
and playing video games. That was basically my life for about two
months, but it could have been worse. Some people wait much longer
than that.
On January 19th, I got the call from St. Louis Children's Hospital
that a new pair of lungs would be ready. My family and I woke up,
it was about 12 o'clock at night and we drove straight to the
hospital. They started prepping me, that's the last thing I
remember for about a month.
I was already under for about six hours before the lungs had even
arrived at the hospital. So really they were operating already six
hours before the lungs had arrived, so that they could just get
them in as quickly as possible, keep them as fresh as possible. The
next thing I knew, I woke up in the middle of February, I did not
know where the time had gone at all, because I'd been under and I
was on all sort of drugs. During that time, I had massive
complications from the surgery. I required two massive blood
transfusions, which is not normal, and the reason I had that is
possibly because of all my years on blood thinners.
Some of the complications during my surgery were more long lasting,
such as when they cut down my sternum, they thought that they may
have cut the vagus nerve. Because of that, I had lost my speech. I
could not talk. So for about almost eight/nine months, I couldn't
say a word. It started to finally get a little bit better until I
was at a whisper and I went to my Camp del Corazon, which is a
heart camp, and just one of my favorite places to go. I had my very
raspy soft voice, regardless, all the campers and counselors
treated me very well, because that's what they do.
The main complication, that really messed with my head, was the
fact that I couldn't eat anything because my epiglottitis was not
working properly and every time I would try to eat or drink, it
would go down my trachea instead of my esophagus. So that was
obviously a big health issue, because if anything got down my
trachea, it would go straight into my lungs, which would mean it
could ultimately turn into pneumonia. I had about three pneumonias
in the hospital, which all had to be treated with high doses of
antibiotics.
It's been about a year and a half now since my lung transplant and
I've honestly never felt better. I've done more in my life than I
have in any previous year. I've gone skiing again, I've done
everything. I've been living my life to the extent of which I wish
I could have before. I just graduated high school. I'm not going
straight to college because I don't think that's what I really want
to do right now. I've gone through a lot and I need to do something
else with my life. So instead I am taking a gap year.
What I hope to do during this gap year, is really help more kids,
travel around to various different countries in Europe and talk
with medical staff, doctors, organizers, and various other people
so that we can raise more awareness for pulmonary hypertension and
lung transplants.
I also just got back from a camp counselor organization where I'm
learning to become a counselor for Camp del Corazon, that I've
attended for the past four or five years, which deals with kids
going through various heart conditions. I really do want make a
change and I think that traveling, talking with doctors around the
world and becoming a counselor and talking with kids could make a
big difference.
I really do think I came out of this whole situation as a much
stronger person. After living with PH for 13 years, I’ve got rid of
it. I never experienced breathing out of new lungs before, so it
was just an amazing opportunity, even though the whole situation
was kind of unfortunate.
What I've learned from this whole ordeal is that I'm really a much
more stronger person than I realized… and that's not meant in a
boastful way, but I believe that if you believe in yourself, and
push yourself, you can get through anything really. I did not have
a good chance of survival, yet now I'm here and my life could not
be any better right now.
My name's Iain Hess and I'm aware that I'm rare.
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