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

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Iain Hess - phaware® interview 171

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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