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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 & Thursday!

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Mike Naple - phaware® interview 244

May 7, 2019

Mike Naple is a media and communications strategist and PH patient living in Washington, D.C. Mike writes about living with PH and the intersection of illness, healthy policy, culture, and advocacy. In this episode, Mike discusses his PH diagnosis.

I’m Mike Naple, and I am a pulmonary hypertension patient.

I switched jobs in June of 2015. I was commuting. It was a foot commute. I noticed after about a month on the job that I couldn't really walk about four blocks without feeling short of breath. But I didn't really pay attention to it, and eventually three months later I was like, "Oh. I need to get a physical."

So I went to get a physical. Then I asked them, feeling shortness of breath, "Is there something that I can do about it?" I went to a pulmonologist. They thought that I had asthma. They kept giving me inhalers and other sorts of asthma related medications. In January of 2016, they prescribed me in-home oxygen. They still thought that I just had asthma. Then in March of 2016, I woke up one Monday morning feeling like somebody was stepping on my chest. So I went and I checked myself into urgent care.

They didn't really know what was going on. Then I was admitted, transferred to a hospital. At the hospital the doctor had said, "The other day I saw somebody who was presenting with your symptoms. You should call your family just to be safe." It turns out, that I did a right-heart catheterization. I was then transferred to another hospital. After about a two-week hospital stay, I got my idiopathic pulmonary hypertension diagnosis.

The interesting thing about all of this is that I think I had been misdiagnosed for the past 13 years or so. In 2005, I was skiing and I got what the doctors then called "high-altitude pulmonary edema". Nobody said anything about PH. The words "pulmonary hypertension" never entered their lexicon. I was just treated with oxygen and sent on my way after like a three-day hospital stay.

That happened in 2005. It happened in 2008. It happened in 2012. In all three of those stays, nobody said anything about PH. I didn't know anything about PH until I got my diagnosis in 2016. The biggest thing is that I know what's wrong with me. I know that there's a diagnosis. There's something to point to. I have a variety of medications and therapies that I use. After my hospitalization, I was in pulmonary rehab. I did that for three months. That was probably the best thing I'd ever done. It was really eye-opening. I was in a room working out with people who were much older than me. One of the interesting things about pulmonary hypertension is that I don't think doctors expect it in younger people. I was 32 when I was diagnosed, and so I've had a few out-of-body experiences. Just feeling like a young person doing a bunch of things that older people are doing.

But again, right now I'm on oxygen. I'm on Sildenafil. I'm on an Advair inhaler, and I'm on Furosemide. Honestly, as a guy, the Sildenafil and the Furosemide, there's just a lot happening there. But I love the fact that I know that there's a plan. I have a great doctor. That's all really great. The big downside is that they talk a lot about needing to have a new normal, and that's been really hard for me. I still work full time. I keep really busy. After I got the diagnosis, I actually switched jobs because I wanted to do something to fulfill my career, because nobody really knows how long somebody lives with pulmonary hypertension. It's only in the last less than 20 years that they have all of these new prescriptions, and medications, and therapies that you really have to kind of go after the things that you want to do.

I struggle a lot between wanting to reach all of my goals in what could be a short amount of time, versus kind of stepping back and really trying to balance my life, putting my health first, things like that. Part of that is because I was actually born premature. I was two months early. So I've had a lot of medical struggles throughout my life. It was always just a part of who I was. When the PH diagnosis happened, I was really thrown through a loop because I just didn't know what to expect. It's been a very trying two-and-a-half years. But I think as we're having this conversation, I feel like I sound really positive about that, and I think that that's a good thing. It's all you really can do.

I would say it's okay at first to be either upset, maybe a little depressed about it. Certainly unsure of what the next steps are. I reached out immediately to find other people who had stories. I particularly was looking for young people who were going through things that I was experiencing, because I think stories are really powerful. I started to write. I do a lot of writing to process my feelings, my life with PH. I share that writing with other people, and I think that's really helpful. I just think the best thing that you can do is find the good in it that you can then help other people who are going through the same thing.

One of the great things is finding other people. I've met a lot of people online. Logging onto like Twitter or Facebook is a great way to learn about other people who have PH. That's actually how I found out about this podcast was through Facebook. That is just a really powerful tool, because oftentimes in our immediate lives, we don't know anybody who has PH. But the fact that you can connect, reach out, it's great. It really gives you a sense of community. There's always someone there to speak to if you need to talk about how bad everything is, because on some days things are really bad. On other days things are pretty good. It goes up and down, and you just have to ride the wave.

One of the big things that I struggle with right now is trying to balance my career. I've worked in politics. I've worked in public affairs advocacy. It's really important for me right now to continue that work. I would also say that I think it's important for people to be involved. Be an advocate for your health. Be an advocate for the decisions that are being made either at the state level or the federal level, that affect your health insurance, the cost of your prescriptions. One of my drugs, if I didn't have insurance, it would be $1,600 a month. I do not have that. So staying involved. It's definitely a full-time job having a chronic illness, especially one that is rare that you feel like you always have to tell people about. But it's important, and I would just encourage people to stay involved, get involved, and reach out and do something positive.

I'm Mike Naple. I'm aware that I'm rare.

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