He used to climb mountains, but now CTEPH patient Greg Fuller is being forced to set new goals for himself because of his rare illness. Though life has dealt him a bad hand, Greg is redefining what is possible in spite of PH. Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware #phawarepod
My name is Greg Fuller from New Hampshire.
Pre-diagnosis, I was probably pretty quick compared to most PH people. It was 2 and a half years or so before I was officially diagnosed. I was swimming one day, and I couldn't breathe.
I had to stop and say, "What the heck's going on here?" Being like most men and a little heavier than I was in my mid 50s, I thought "heart attack" and said, "I don't want to go see a doctor."
So I didn't. Mistake number 1.
It continued on, got worse the following year, was taken to an emergency room. That was an experience. They found I was loaded with these clots, admitted me for the night. I wanted to go home. They said you have to be on blood-thinners and follow-up with your regular doctor.
That was it for basically another year, and then I couldn't climb up 3 stairs, and I was completely out of breath. My two sons, about 30, said, "Dad, we don't want to lose you. You've got to take care of something." So, I saw my regular doctor. She said, "We need to send you to somebody."
In a nutshell, they ran a lot of tests. I found a country pulmonologist up in New Hampshire. He was the only one who knew what I had ... After the tests, and he called me, and he said, "I need to see you." I went in to see him. He liked to draw, so he took out a pad of paper, and he started drawing on it for me. He said, "This is what you have."
I looked at him, and I said, "Can you fix me?" and he said, "No, but I know somebody who can." That was September, October of '12, and then I had my surgery January 17 of 2013.
They saved my life because the pressures in my heart and lungs were about 100 or more. The normal pressures should be, I guess in the 20s. I have distal clots, which are way down deep, and they couldn't get those out, so they got the bigger ones out, lowered the pressures, but my symptoms started to return.
I went back. They put me on some meds. Didn't help ... Changed my medication ... Didn't help ... Finally found a drug that did work, and it's lowered my pressures into the 40s, but I want more.
I used to climb mountains, snowshoe for hours, go on hikes for miles ... I was very, very, very active, and now, I can't do any of that, but I'm alive, and I'm very thankful for that. So, I'm on another medication, which I just started four weeks ago. Titrating on that ... Hopefully, it's going to help. If it doesn't, then there's my, I guess, last-chance thing now is balloon angioplasty, which they go into the lungs way down deep.
It's like what they do to your heart, I guess. They go way down in the lungs, and they push all the stuff out of the way. I've been in contact with a woman on a Facebook page, who had the procedure done, and it's helped her quite a bit. I talked to me doctor about it. He said, "We'll see how you do on the medication, and if you don't do as well as you want, then we'll talk about the surgery."
I'm psyched. I want to climb Mount Washington. That's my goal. The things I used to love to do ... Hiking, snowshoeing, climbing mountains ... I like to fish now. I bought a boat this year. I'm going to be 60, and I said, "If I don't buy a boat this year, I'm never going to do it," so I bought a boat, and I'm fishing quite often.
I can still work in my yard. I bought a tractor, so it's a whole lot easier now. I still work outside my yard. I have a garden. I can walk as long as there's not big hills. Hills are not my friend. I just like being active.
It's a fairly rare disease, I guess, for men. Men don't like to go see doctors. We can be stubborn, and I was stubborn. If it wasn't for my kids, I might have been dead. So, I try to let men know that if you don't feel well, go see a doctor. It's probably not in your head, and it isn't going to go away, or it may not go away.
I try to be an advocate for that. I try to help people make decisions if they should have the surgery or not. My pulmonologist has ... his office has asked me a couple of times to talk to people who aren't quite sure if they're going to have the surgery or not. I've spent quite a bit of time on the phone with people, and they'll explain the situation, and they say, "Well, should I have the surgery," and I say, "I can't answer that for you, but I can tell you if I was in your position, here's what I would do."
One guy had the surgery, and he called me back, and he said, "That was the best thing that I ever could have done." That was really good. I just ... I want to help people. I'm kind of strange in a way that ... I didn't know anything about the surgery that I was going to have, and I didn't want to know. They wanted to give me all this information, and I just didn't want to know.
I just wanted to be fixed. I thought I was going to do all this stuff after the surgery, and it didn't happen. If people want to know, I'll tell them exactly what happened. I'm just a straight, up-front kind of person, and if I can help somebody, then I want to do that. That's what I try to do.
If someone tells me I can't do something, then I'm the kind where I'm going to prove that I can do it. After my surgery, because of the distal clots, my kids were told, "Your dad got dealt a bad hand in the card game of life," and my kids said, "You don't know our dad.”
So, I kind of want to prove them right, too. I walk. I can walk 5, 6, 7 miles, and as long as there's no big hills, I'm fine. Mountains are out of the question right now, which is too bad, but ... One of the goals that I was thinking about was walking from Massachusetts to Maine.
Now, it sounds like a long walk, but it might be 10, 11 miles, just because of the way the states are. I was thinking about doing that because it's fairly flat just to give myself another goal because the goals that I had before right now, I physically can't do. I've adjusted them downward. They're a little bit different now. So, that's what I'm going to try to do.
I’m Greg Fuller and I’m aware that I’m rare.