Ben

Congenital heart disease

Heart valve problems

“It’s gonna suck, but it’s gonna be ok”

When Ben had valve surgery at the age of 25, he was nearly half a century younger than the next youngest patient on the ward. He’s sharing his story so other young people in his position know what to expect.

Ben was born with bicuspid aortic valve disease, an inherited condition which meant one of his heart valves didn’t form or function normally.

Although his father has the same condition, it wasn’t picked up in Ben until he was 15, when the GP first noticed a heart murmur. He was then referred to a cardiologist to monitor the condition of his heart and valves.

For 10 years the valve functioned well enough for him to live a normal life. But after routine tests one Friday in May 2020, he got a call from his cardiologist saying he needed to see her first thing on Monday morning.

“I was terrified. My Mum actually came up for the meeting with me because I was a bit beside myself really, completely shocked.”

At the appointment, Ben was told he needed to have a heart valve replacement as soon as possible.

“I was told that some statistics of my heart were really not good and I was told I had two years to live if I didn’t do anything about it, which at 25yrs old was really scary,” he explains. “Fortunately, my cardiologist, who’s brilliant and so knowledgeable, really put me at ease. She talked me through everything that would happen.”

The news also came as a shock to loved ones, not least because Ben had always been really fit.

“At the end of 2019 I did the 80k half lake cycle race round Lake Tāupo. I felt tired afterwards but I didn’t feel like I struggled with a bung heart. So everyone was expecting me to be fine and fit and happy, and then I wasn’t. There were a few tears all round. My girlfriend, she’s looked after me the whole way through, and I think it was pretty hard on her.”

Waiting for valve surgery

During the eight-week wait for valve replacement surgery, Ben had some anxiety around how much he could safely do.

“I’d been told kind of don’t do too much exercise in terms of lifting weights so I could go for walks but at this point I didn’t know how far I could push myself in case something went really, really wrong. So I talked to a few people close to me about it but mainly I just tried not think about it. 

“Throughout that time I felt like I was starting to get symptoms, like shortness of breath up hills or chest pain. But I think I’d actually been experiencing them the whole time – it was just that now I knew what they were.”

The surgery finally happened a week before Auckland’s second Covid lockdown. Although Ben was nervous, he thinks the experience was harder for his loved ones.

“My sister, my girlfriend, and my mother saw me into the theatre, and I think they were having a much worse time than I was. I probably had it the easiest out of everyone,” Ben explains. “It sounds really morbid but for me it was a win, win – either they were going to fix it or I wouldn’t wake up, so I wouldn’t know about it. So it was a lot harder on them than it was on me.”

Rehabilitation after heart valve operation

The surgery went smoothly and Ben quickly turned his attention to rehabilitation

“Post-surgery we had a physio meeting in our ward with other people who’d had the same operation. There were four of us and it was basic exercises to slowly re-build strength. I must’ve been the youngest person there by about 50 years. The next youngest had a walking stick and I thought if they got through the surgery and are doing these exercises, then I’ve got no excuse.”

Each day Ben walked a little further round the hospital. Once discharged, he was soon out walking the streets, although he found it helpful to exercise with someone else for safety.

“I was really eager to get outside because we’d already been through that first lockdown and I’d been stuck inside for a month straight. I think there were a few times where I pushed myself a bit far, but fortunately I always had someone with me and they’d sit with me while I caught my breath. I had an excellent support system.” 

After a month he was walking up to five kilometres and was able to start cardio work at the gym. Now, nearly a year on he’s back at the gym doing some weights alongside his cardio workouts. And he has set himself some pretty serious fitness goals, including completing the 160km cycle around lake Taupo.

“I feel so much better than I did before and it really tells me how bad I was actually feeling before,” he adds.

Ben has also adjusted to taking a daily dose of warfarin.

“That’s a daily medication forever but it’s an easy trade off really, no question at all,” he says. “It has been an adjustment in terms of diet and what mixes well with the warfarin. But again it’s a pretty easy trade off.”

Getting back to normal

Ben’s recovery has been helped by great support from whānau, friends and his workplace.

“I’m very, very lucky. I live in my flat with one of my absolute best friends and he’s just been awesome. He’s come to the gym with me every time to make sure I’m OK. And my girlfriend has looked after me the whole way through. She probably doesn’t ever really want to talk about it or think about it again because it was pretty hard on her.

“My friends have all been excellent about it and I work for a brilliant company that’s been super supportive. Quite quickly I was itching to get back because I was really bored at home not doing anything.”

However he also admits it would have been nice to talk to someone his own age who had been through heart surgery themselves.

“That’s why I wanted to share my story, because before the surgery I didn’t know anyone my age that had been through anything like that. I don’t feel like I missed out, but it would’ve been good to have someone who’s just been through it to say, ‘it’s gonna suck but it’s gonna be OK’.”

And that’s his key piece of advice for anyone who finds themselves in a similar situation.

“It’s a terrible position to be in, but it does get better and life does get back to normal. For me the surgery feels like a lifetime ago now. I’ve got a big scar and mechanical ticking in the back of my head but I’m back to normal life and everything’s done. All that worry is now behind me.”

Shared May 2021