I’m Aware That I’m Rare: Scott Fleetwood (476)
the phaware® interview
In this episode, Scott Fleetwood, a former pulmonary hypertension patient from Buffalo, New York, shares his journey with rare diseases. He initially experienced shortness of breath while playing hockey and was later diagnosed with pulmonary hypertension and scleroderma. Scott received a double lung transplant in 2017. He discusses the initial fear he felt upon learning about his condition and the importance of finding a doctor you trust and following their instructions. He acknowledges the challenges and risks associated with lung transplants but highlights the positive outcomes he has experienced, such as walking his daughter down the aisle and becoming a grandfather.
My name is Scott Fleetwood. I am from Buffalo, New York. I am a former pulmonary hypertension patient following a lung transplant in Pittsburgh. I also have scleroderma, so I have a couple of rare diseases that I’m aware of.
I was playing in a media hockey game and one of the guys asked me to stick around so he could take shots on me because I was a goalie. After a while, I was really slow to get up and having a hard time catching my breath. He said, “Hey, Fleets, you’re out of shape. You got to lose some weight or something.” One thing led to another. I saw a doctor. Eventually, we got around to seeing a pulmonologist and he then suggested the upper right heart catheterization and that’s when I found out I had pulmonary hypertension.
Matter of fact, one of the guys I play with, his dad was a heart surgeon and actually had looked at my chart. He was the one who said I do have scleroderma. I said, “well, yeah, I know, but I’m just losing my breath all the time. I can’t catch it. I can’t walk from my truck to the locker room without huffing and puffing.” So that led to seeing a pulmonologist and going through the battery of tests and things that your pulmonary doctor will do with you.
I was out of breath. I was also overweight and I didn’t eat so great. But all things considered, I look back at it now and I’m going, “Well, maybe I should have picked up on it.” But it’s not something that’s in the front of your head that it’s something terrible that’s lurking.
After I saw the pulmonary doctor, he recommended that I see a PH specialist here in Buffalo. I saw Dr. Gibbons. He then eventually recommended that I get a lung transplant. It was up for me to decide. I ended up going with my gut feeling and choosing Pittsburgh. When I got to Pittsburgh, I spoke to Dr. Marc Simon, who is a cardiologist. He gave me a bunch of drugs to try while I was getting upper right heart caths. He found that a lot of these different families of drugs that I was trying just weren’t working on me. Eventually I ended up getting on the list and receiving my double lung transplant on August 30th, 2017, which is a trip of about five and a half years from me going, “Oh, I’m really out of breath,” to getting the lung transplant.
I remember when I first got my phone call from my pulmonologist telling me that he got the results back from the upper right heart cath and he told me that I had pulmonary hypertension. I did the thing you’re not supposed to do. I Googled it. The funny thing about Wikipedia is that it’s all in the way you phrase things, especially when you’re scrolling on your phone. They said the life expectancy of a person with pulmonary hypertension is one to two years, but I didn’t scroll to, “If left untreated.” So I didn’t see that when I first read it and I go, “Oh my God, I’m going to die.” Just for your own information, that’s been fixed. It’s backwards now. If left untreated comes first.
I got that initial scare and I was really surprised at myself that it really didn’t bother me a lot. I’ve lived a full life already. I’ve had a hundred different jobs that I loved where you didn’t actually have to work for a living. I’ve had a great life, a wife, a daughter. I guess it was I was more concerned for their wellbeing than my own, you might say. After I got that initial reaction, I started working with Dr. Gibbons and immediately got hope that this is something I can deal with. This is something that’s manageable. On the other hand, it’s that cannula hanging off your nose all the time, the leash you’re on when you’re home, because you’re tied to an air compressor. They’re not a big hassle, but you go traveling, you got to bring six batteries for one air flight. It’s an inconvenience more than anything. I got kind of used to it, maybe a little annoyed with it.
We got to the point where the drugs just weren’t working and my weight was 290. My doctor actually while I was in Buffalo, he transferred me to UPMC and I took a nice two hour long ambulance ride to Pittsburgh. You’re sitting there in the back of the ambulance and talking to the guys that are with you and so on and so forth. Then you get there and then it’s like one of those point of view scenes in a TV show where it’s like you’re almost like you’re in St. Elsewhere or something where you see the ceiling and you don’t really see anything. So, that kind of is a little bit on the scary side. Then eventually when they got around to doing the diagnosis and recommending that I get a transplant, that’s when the reality of things really kicked in, because I never really thought of a transplant as being something that was going to be in my future obviously.
I mean, even I remember when my doctor told me I had pulmonary hypertension, I said to him, “So, how long do you think I can keep working for? He said, I’m surprised you lasted this long. You’re going on disability right now. You’re done. I’m pulling the plug on you.” A lot of it was I didn’t really have a lot of choice in the matter. A lot of it was this is the way it is. You’re going to retire. You can’t work anymore. Even after the transplant, the doctor said, “You’re done playing hockey.” I was hanging on for hope that she was going to let me play again. Then finally she said, “Okay, as soon as COVID is done, you can go back to playing.” Then I took a bone density test and found out that I had osteopenia and she said, “You’re never playing hockey again. Get rid of your equipment.” So, I did.
I’m going to be a cheerleader here for UPMC. This is kind of like the place you go to and nobody else will look at you or talk to you or discuss with you your situation. I met a lot of incredible people. It’s kind of like the last resort , I guess you could say, for anybody who needs to get this done.
How they do things there is they’ll bring you in on a Monday morning and sometimes you’ll have tests lined up. You’ll have tests lined up for Monday through Wednesday. You’re going to get breathing tests. You’re going to get a tube shoved down your nose and they’re going to check for acid reflux. There’s this whole battery of tests and things that you go through that’s all part of the process of the evaluation. One of the things they also do is they have this little meeting on the first day and they take you to this big conference room, and you’re there with other patients and other caregivers. Some people, there’s four or five people for one person. For me it was just me and my wife.
They will spend the next hour and a half, two hours scaring the bejesus out of you by all the ways that you’re going to die because of this lung transplant you’re going through, everything from rejection, to things happen in the operating room, to infection, to kidney failure and all the other things that come along with it. They make you well aware of all the things that can go wrong. So, then they do a little break and they break for lunch and afterwards about half the people don’t come back. It’s not for everybody. And as a matter of fact, just before we broke for lunch, my wife said to me, “Are you really going to go through with this? I mean, this sounds pretty scary.” And I says, “Well, let’s put it this way. They can give me a perfect set of lungs that fit perfect. They don’t have to shave anything. They just drop them in. It’s a perfect fit. They can sew me up, not even a scar. I go outside and I get hit by a bus.”
Anything can happen to anybody at any time. For me, it’s just a matter of what are you willing to accept as a quality of life. For me, I didn’t want to do that anymore. I didn’t want to have the hose in my nose anymore. I didn’t want to be restricted on what I can do and so on and so forth. I’m still restricted. I mean, everybody’s got restrictions, but not like it was when I had PH.
There’s no signs of PH, but there’s no guarantee it’s gone forever. There is always a chance that it could come back. I was a difficult case, obviously. I’m not exactly a poster child for pulmonary hypertension or scleroderma. First of all, I’m the wrong sex. I’m too tall. All the criteria, I’m just on the edge or fringe of everything. For somebody who’s 6'1", 6'2" to get a double lung transplant, they get excited about those things because now they’ve got something to do with these big lungs they get. Because you can always put smaller lungs into somebody. You can’t put bigger lungs into somebody. It’s also an advantage too if you’re getting a lung transplant. Numbers are in your favor, so to speak.
As far as the scleroderma goes, it’s a factor that my transplant team is aware of. As a matter of fact, my transplant doctor, she recently left UPMC to go to run the program at University Hospital in Cleveland. She obviously, I still see Dr. Domsic in Pittsburgh for my scleroderma, and I see Dr. Kilaru in Cleveland for my transplant. So, I stay in touch with both of these ladies, tele-visits once a year and in-person visits once a year and things like that now. But we stay on top of the scleroderma. I’m on two or three drugs that, like many of the drugs PH people are on, it wasn’t developed for PH, but it ended up helping people with PH, so, that’s why we get on these drugs that we get on.
To sum it up for people, I would say make sure you get a doctor you trust. Make sure you get a doctor that you’re comfortable with and you can work with. I’ve been very lucky with my doctors. They’ve been one to recommend to somebody next in line. Like the one pulmonologist recommended, Dr. Gibbons, they’re not even in the same group. It wasn’t a matter of recommending some PH guy. It was like he recommended the PH guy, that sort of thing. So, I’ve been pretty lucky with all my doctors in that way. First and foremost, once you find a doctor that you’re comfortable with, do what they say. Just do what they say. Don’t argue. You can question, you can discuss, but just do what they tell you to do. Because I see so many things on Facebook and stuff where people just decide that they want to do things their own way because they think they know better. That 12 years of education that they go through doesn’t mean anything to anybody apparently. So, I would recommend highly that you follow your doctor’s instructions.
The other thing is get into a group. I’m involved with there’s a UPMC group for post-transplant people. There’s a bunch of groups for PH. Find a group that you’re comfortable with. I like the PH Men’s PHight Club and I’m involved with the Western New York PH group. Even though I don’t have it anymore, I stay there in case anybody does have questions about lung transplant or anything else. I just started a transplant group for University Hospital in Cleveland for their program.
Get into a group on Facebook or into a group where maybe they meet. I know here in western New York, they meet in public. Sometimes they meet on Zoom. Sometimes they meet face-to-face. Use those people to your advantage. I know when I was talking to a couple of PH guys, whether it be in England, or in Ireland, or wherever, where we would just talk and chat. Some of us are still friends. Some are gone. But it’s good that we can talk and we learn from each other. I hope it makes the journey better for everybody, especially to have somebody who has taken that route. It makes the journey maybe not better, but a little easier.
It is scary. I understand. It’s not for everybody. Not everybody can get a lung transplant. That’s definitely true. But if you have the wherewithal and can do it, I have walked my daughter down the aisle and I’m going to be a grandfather in May. None of this would’ve been possible without the care of the transplant teams and to be honest with you, the other transplant recipients before me. Because if it wasn’t for the people that took those big steps back 30 years ago, we wouldn’t be where we are today, whether it be with pulmonary hypertension or lung transplants or scleroderma or whatever. It’s huge.
My name is Scott Fleetwood and I’m aware that I’m rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com
