This podcast series, created and produced by phaware, is being offered as a regular guest feature on Pulmonary Hypertension News to bring the voices and life experiences of PH patients, family members, caregivers, healthcare specialists, and others to our readers. You may listen to the podcast directly, or read it via the transcript that runs below.
I’m Aware That I’m Rare: Justin Martinez
The phaware® interview (Episode 102)
Justin Martinez is an identical twin diagnosed with pulmonary hypertension in 2002 at 14 years old. He is a double lung transplant survivor since 2005. Justin, now 29, discusses his history with PH and life after transplant.
Hey everybody, I’m Justin Martinez from Pittsburgh, Pennsylvania. I had pulmonary hypertension, I was diagnosed at 14. It got pretty bad that I ended up needing a double lung transplant, which I got Sept. 4, 2005, so 12 years now.
Ever since I was little, I always thought I was out of shape, something was wrong. My identical twin brother, just keeping up with soccer practice, track and field, whatever it was, I always said, “It feels like I got baby lungs.” I couldn’t keep up with anybody.
I started doing lacrosse in eighth grade. Earlier that year, I was at a friend’s birthday party and I passed out from exhaustion. I mentioned that when I had to get my lacrosse physical and they took it a step further and got an EKG and took me to Children’s Hospital UPMC in Pittsburgh, and that’s when I was diagnosed with primary pulmonary hypertension. When I was diagnosed, the doctor at children’s, I guess he was just having a bad day, because he just told me straight up I’m never going run again, I probably won’t see 18, this is very serious, I need to get on medication right away, and address this issue. Him telling me, “You’ll never play sports, you’ll never run, you probably won’t see 18,” it’s absolutely devastating. Being 14 at the time, I didn’t know how to take it. This was all brand new to me, I didn’t even know I was pretty much on the verge of death. Going home with that news, I was pretty crushed for the next couple days.
It was oral medication at first and then it went to IV medication pretty quickly after that. Eighth grade, at 15, I got my pulmonary pressures checked with the right heart catheterization and the pressures showed to be, I believed there were 64, 65 area, and normal pressures for a healthy person is 20. They were pretty high there. It wasn’t too bad, because I was still in good physical appearance. I could still walk, walk up a flight of steps without getting shorter breath. It was any time I was running, I would pass out.
In my sophomore year at high school, I had my wisdom teeth out and I had a negative effect with the anesthetic, which doubled my pressures. When I came out of surgery for my wisdom teeth, walking up a flight of steps became a chore, and that’s when they immediately wanted to start me on IV medication. Mentally, it’s the whole high school age, walking around kids with this IV attached to my body, with the pump the size of an old Game Boy attached to my hip at all times. Just awkward, especially because no one really knew I was that sick. And then, junior year I started in a wheelchair because it was so bad. That same year is when I got my call for a double lung transplant. It was depressing for sure, but I’m a big firm believer in being mentally positive. I never complained. I just had a really strong mindset going into this whole thing.
When it got to the point where they started talking transplant, first you’re thinking, “Absolutely no way, I do not want to go through with this.” It’s taking donor lungs and putting them it into your body and the idea, especially when this is all new to you, it’s extremely foreign and you kind of don’t want to go that route. But the sicker I got, the more I was like, “OK, I need to have this procedure done.” You go in for all the testing to see if you’re a candidate to be accepted in that transplant program. Lungs are one of the harder organs, I believe, to acquire.
You do all these tests, and due to the fact that when I was sick I couldn’t run, I couldn’t do anything else, but I was lifting weights — eighth grade, freshmen year, and sophomore year before my pressures doubled, like I said earlier. Doing that I was in pretty good shape, all things considered, so it was very tough for my doctors to argue the fact that I needed a double lung transplant because the panel that approves patients just didn’t see it. I believe I passed out again, and that was when they petitioned the board to really get me on a transplant list. Once I was on the transplant list, it didn’t take long for me to get my first call for viable lungs, which didn’t go through.
When you get a false call like that, it’s just a rollercoaster of emotions. You don’t know what to expect, you’re just overwhelmed with all these thoughts and emotions. I was a wreck when I did get that first phone call and I ended up getting three calls. The first two didn’t go through, and the third one did. By the time I got that third one, I kind of blew it off thinking it wasn’t going to be a go, and I was just going to head back home after that. When it did actually go through, I woke in the ICU asking if I even had the surgery, because they put you out and take you into the operating room and when you come to, you’re not even sure what’s going on.
It all happened pretty quick for me and I’m thankful for that. It is definitely a rollercoaster of emotions, and I’m glad there’s all these Facebook support groups, because now it actually gives people some kind of perspective of what to look forward to through this process. So, it’s definitely beneficial. Waking up in the ICU. I was in the ICU for seven days and then two weeks total, they put me in the recovery wing for transplant patients. I was talking with a lot of different patients, up walking around, they had me walking steps right away. I got back into the weight at three months post. I went into that surgery at 145 pounds, I came out at 104 pounds. I’m 5’9″, so I was skin and bones at 104 pounds.
At three months post, they declared I can start working out again. At that point, I just continued to have the mindset that I’m not going to live my life like I still have a disease. Because a lot of doctors and a lot of people here that … the doctors will tell, “You’re trading one illness for another.” Back to that positive mindset, I just kind of refused to believe that, because five months post-transplant I was back to playing competitive paintball, which I did in my earlier years. I got on the national team and we traveled the country playing different tournaments and highly competitive. My senior year at high school I went back to playing lacrosse for the year on the varsity team. I’ve ran 5Ks. I’m an avid outdoorsman. I just don’t think after surgery, sit there and delve on the fact that, “Oh, I have another illness now, I can’t get back to a normal life,” because you absolutely can.
All my friends and all the support that I’ve had, no one’s ever treated me different, that I am still sick, that I had a double lung transplant and it’s been a real blessing. I’m thankful for that, because you absolutely can live a normal life to some degree after PH. Just this whole journey, I guess you can say, from 14 to now at 29, there are points where the doctor said, “Next time you pass out, you might not wake up.” Just going from one extreme to the next, it was just the greatest thing ever, because I could actually breathe. I could actually climb those steps without being shorter breath, without taking a break.
It was a miracle. It’s tough to describe something like that when all I really knew for the last couple of years is this illness, that people suffer with every single day of their lives. To get that opportunity to breathe normal, to inhale deeply and actually not feel tired, not feel breathless, it’s incredible.
My name is Justin Martinez and I’m Aware That I’m Rare.
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