Living a full life as a young man with PAH

“In the years leading up to when I got diagnosed, I started to notice I was getting out of breath and getting tired really quickly, but it never resulted in much when my parents took me to the doctor.

When I was 11, I had a seizure whilst at the beach with my family and this led me to a hospital visit which resulted in getting my diagnosis.

Life didn’t change a lot at first; I started taking some tablets and being 11, I didn’t think too much into it. But things changed  when at the age of 12 I was started on epoprostenol, delivered intravenously through a PICC line in my arm.

I transitioned into high school, and walking around with this thing hanging out of my arm, and a backpack on at all times, wasn’t ‘normal’. People kept asking what was wrong with me, and over time I started to feel like a bit of an ‘outcast’.

None of it was malicious; it was just curiosity because I was different. But at that age, everyone’s trying to fit in and I was clearly different. It was rough for a few years but my escape from it all was playing video games.

I would wake up, jump on the X-box with my headphones on, and play games all day. Granted, I did meet a few people via playing online – people I’m still friends with today – but it meant I wasn’t doing much physical activity, and over time there were concerns about whether my bones would start to get weak.

The magic of re-discovering activity

When I was 15, my family started to push me a little bit more to get outdoors, and because I used to love cricket as a kid, they one day managed to persuade me to go and have a hit at the nets. It just happened that on this day, two friends who I grew up with where there. This led to us meeting up weekly to have a hit or to just hang out.

Over time, this started to show me that I wasn’t as incapable as I thought I was, and that I could slowly go back to living the life that I did by being more active and playing a bit of sport.

Also, by deepening my friendship with these two friends and getting some normalcy back in my life, it really helped me come out of my shell again and feel more like my old self.

Finding my voice again and coming out of my shell opened everything up to me. I started to try a little bit harder at school and set some proper goals for what I wanted to do after high school. Since then, I’ve achieved so much and ended up getting two Bachelor’s degrees from university – one in computer science, and one in finance – which has led to an exciting career that allowed me to move to a different state on my own for a year. That was huge.

Career, travel, and sport: Living well within my limits

I now work in investment management at a company here in Brisbane. There are occasional days when I don’t feel great, or when I have to take time off for a medical appointment, but I’m really lucky to have great employers who are flexible and understanding.

Right now, I’m on Veletri through a Hickman line for my PAH, as well as oral medication. And honestly, at the moment everything feels quite good. I’ve progressed so well over the past few years that I’m now down titrating down on the Veletri with the hopes of coming off soon. While it’s exciting, I do still get a little short of breath here and there, but it doesn’t stop me from living life  – I’m still playing football, going to the gym, and doing everything I normally do.

I’ve even been on three different snowboarding trips – including one in Japan – and I’ve taken part in a group triathlon and run in a 10km race.

I would say the biggest challenge with any of these things is just making sure I have my medications organised and on hand, but other than that, I don’t feel any real constraints. Over the years, I’ve found my limits and I try not to go beyond them, but this took years of slowly pushing my boundaries to figure out what those limits are, and to increase them over time. They will be different for everyone, so you need to be patient while you find yours.

People are always a little shocked when I tell them how much I am able to do with PAH, and I do know my story isn’t common. But I think it’s important that people keep their head up and make the most of life within their limits. Mindset is really the key.

Relationships and friendships with PH

Now that I’ve found a bit more confidence in who I am, I do find it a little bit easier to speak to other people about my condition, so I am pretty forthcoming about it.

Most of the time people are receptive when I tell them about my PAH, and I don’t think I’ve ever come across someone with something negative to say. If they did have something negative to say, they’re probably not the people I want to be talking to anyway! Most people are just curious and interested to find out more.

I actually think talking about my PAH is a really good way to break the ice with new people. They probably don’t have any experience around pulmonary hypertension, but most people have been impacted by health situations at some point, and I think it’s a good way of finding common ground that can quickly deepen and build relationships. Having PAH certainly doesn’t stop me from meeting people or having a social life.

Leaning into my support network

I’ve built really good relationships with my medical team, and I’ve never felt like ‘just a patient’. Right from the start I’ve felt able to contact them straight away with any questions or worries, and I’ve spoken to them about everything from school life to university and work. They always have good advice to guide me down the right path.

My medical team have gone above and beyond many times over the years – not just for me, but for my family too. I feel extremely lucky to have such great support.  

It’s been 16 years since I was diagnosed with PAH and I think the biggest thing I’ve learned is how important it is to live in the moment more. Don’t ruminate, or get caught up in the negatives, because it doesn’t help you in any way. You need to keep your head up and do what makes you happy, and live as fully as you can within your limits.”