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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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David Stott - phaware® interview 234

Apr 2, 2019

David Stott is a 42 year old musician and operating theatre practitioner from north west England. David was diagnosed with IPAH in August 2013. He discusses his road to diagnosis and how it led to his band Ward XVI.

My name is David Stott. I'm from Northwest of England. I was diagnosed 5-1/2 years ago with idiopathic pulmonary hypertension, and it came out of the blue. I was 36.

I was diagnosed quite quickly, really. I'd been quite active and quite very fit for all my life playing lots of sports and lots of running. I did a half marathon, and exerted myself pretty much. I really pushed myself very hard. Then, I flew to Australia two days after, which is like a 30-hour flight. From there, I was never quite the same again.

I got back home after about a month overseas. I spent a little time recovering and was starting to try to get fit, and after running, just felt like I couldn't push myself anymore. I was getting really breathless, and I couldn't run more than 50 meters without really feeling like I was suffocating. One of my colleagues at work had noticed that when I was walking and talking, I was getting really out of breath.

I work in a hospital myself. It was quite convenient for me to just go and see one of my colleagues, and they thought it was asthma or hay fever or something innocuous, and then they send me for urgent scans, and told me that my pulmonary pressures was something 120, 130, and nothing was quite the same again.

I'm a manager of the operating theater. I guess from over there it’s called the OR. I knew, myself, how fit I was, and what should and shouldn't be normal, but for then, I got work in healthcare for 20 years, and pulmonary hypertension... I knew nothing about it, and it was nothing very, I think, exposed in terms of knowledge or information for people about pulmonary hypertension, especially in Britain, and not many people know about it. I know it's a rare disease, but there's very little known about it. When I was told about it, and there was no other information to tell me what it was, I made the big mistake of going to Google, and frightening the life out of myself. At that time, lifespans and prognosis of one to two years. That was something that I did that kind of was the big shock, really.

Because I was working in the hospital, I was quite well looked after. As soon as they set me down, and told me on the day what was wrong, I more or less stayed in the hospital for two weeks after that. So, I stayed in my local hospital. There wasn't a regional center for pulmonary hypertension. So, after five days of being in my local hospital, they sent me then to regional specialist who did the right heart catheterization, the exercise tolerance test, really just did everything that they could, really.

When I was diagnosed, the information and leaflets were more about how your family should cope with losing a member of the family to PH rather than trying to empower a patient. It was all about how your family would survive this route and the individual was just whose been diagnosed with it. So, it was quite bleak, and it was very scary. It got to a point where I was too scared to move.

I'm, basically, now still 5-1/2 years on the same therapy I was when I was first diagnosed: Sildenafil three times a day. I don't take anything else. From diagnosis to now, I’ve been asymptomatic. I've never had blackout. I'm able to live a normal life. I can still run, not as fast as I used to, but I'm not as young as I was either. I haven't got a fourth gear, so I can't sprint a lot. I can jog and I can do the exercise classes, but it's not impacting on my job and it's not impacted on anything else, I think. 

The only thing that it really impacted on was psychologically. When I was diagnosed, there wasn't a lot of support from perspective of mental illness and how to cope with it. I think the support and counseling has improved greatly. There's only so much destruction you can do before you really start to weigh heavy. I think looking back, you have to relearn your body, and I think that's one of the hardest things. Initially, there’s a paranoia and there's a lot of fear that every time you get a cold, once you've been diagnosed, you automatically will deny it's something else. You tend to always try to attribute something that you'd normally have to actually being a PH symptom; a cold, a flu, any aches and pains. You think that it's something more sinister.

There are sad stories, but there's also a lot of positive stories. You know that they seem to be younger people showing us that there is life after diagnosis. I think there wasn't that five or six years ago. When I got diagnosed, I was in a position where I was working a lot, caught in a rat race, and I wasn't doing a lot of what I loved. When I was then diagnosed, it enabled me to take a step back and say, "Well, what do I want to do with the rest of my life? If it was the last year, what do I want to do?"

So, I started playing guitar, but I'd not been in bands. So, I consciously said, “I’m going to join a band, going to try to enjoy myself.” The name of the band is Ward XVI. It's based upon patients in a mental asylum. We like to dress up like Alice Cooper and Rocky Horror. [It’s more about the theatrics and image on stage.] When we're on stage, we're all acting out and getting bloody. It's a visual show a bit like theater. It enables me, I think, to get into a different character and forget who I'm now and go on stage and actually be someone completely different.

We're quite successful in the underground scene. We've been on big festivals. I also met my fiancé, my girlfriend now, and we're having a baby. So, now I know if I haven't had been diagnosed, and hadn't got PH, I wouldn't have met the love of life, and I wouldn't be playing the music that I love.

My name is David Stott, and I'm aware that I'm rare.

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