“We need to talk about heart disease”

Heart disease "runs rampant" through Peter's family. He's encouraging people talk openly about rheumatic fever and other heart conditions for the benefit of all the whānau.

Peter thinks he was just four years old when he contracted the group A streptococcal infection that led to rheumatic fever and, eventually, rheumatic heart disease (RHD).

Initially the strep infection wasn't picked up and he had ongoing discomfort in his legs – likely as a result of rheumatic fever – over the next couple of years.

"It wasn't painful but if I remember back to that age, I remember quite a bit of discomfort. I think that's why it took quite a while for the doctors to figure out what was going on."

Eventually that discomfort became pain so bad that Peter could barely move.

"I remember specifically when I turned seven, I struggled to the point where I couldn't walk any more. My parents thought there was something going on at school, that I didn't like school, or that I didn't want to do this or that. But it was really because I couldn't go, I couldn't move my legs."

Peter was eventually diagnosed with rheumatic fever and he spent 14 months in hospital recovering.

Monthly penicillin treatment

Peter began the monthly penicillin injections given to anyone who has had rheumatic fever. These injections are vital to stop further bouts of rheumatic fever causing damage to the heart.

"It was painful. The majority of people I know that have rheumatic fever receive their bicillin injections (the penicillin injections) in the top of their buttock. My father refused for me to have it there and the doctor said it was ok to have it in my thigh muscle. So I was one out of 16 recipients of the bicillin injection at the time in Wairoa and the only one to receive it in my thigh – my father was quite a stickler."

The bicillin injections continued until Peter was 21 years old.

At 24 he travelled overseas, working in different countries around the world. However, when his father passed away from heart disease in 2014, Peter came home to his family.

Shortly after returning to the Hawkes Bay, Peter met his current partner and life settled down. While holding a role with a large hospitality company, he also pursued a goal of becoming a funeral director to help Māori and Pacific Island communities.

He and his partner also became matua whangai (parents to non-biological children within the family) to Peter's two nieces.

Unfortunately, around the same time, Peter began to experience considerable health problems.

"I started to have liver complications, then breathing complications, all these other different things going on. I was diagnosed as a type 2 diabetic, my eye-sight was failing, and my cardiologist realised that at some point one of my aortic valves needed to be replaced."

Heart disease runs in the family

Valve disease wasn't unfamiliar to Peter. After all, he wasn't the first in his family to experience rheumatic heart disease, or heart disease more generally.

"I’m Māori and heart disease runs rampant in my family," he says.

Peter's uncle, who had rheumatic heart disease, died at 26 from complications following heart valve surgery. His grandfather died at 46 from rheumatic heart disease and his father died at 51 from coronary artery disease (ischaemic heart disease). Other relatives also have heart problems.

His family wasn't the only reminder of the devastation heart disease can cause. He regularly saw it in his capacity as a funeral director.

"A lot of deceased that came to us had died of heart complications or COPD (chronic obstructive pulmonary disease). A few of them had the big old train track right down the middle and it was like, 'oh my gosh, you had heart surgery.' It was another big wake-up call because I would know that the person was a smoker or had done this in their life-style and I'd think, 'oh gosh, no, I don't want to end up here.'"

Lifestyle changes for valve surgery

Peter knew it was time to make some lifestyle changes – the biggest of which was quitting smoking. A heavy smoker since the age of 18, he had his final cigarette the day before his valve surgery, after cutting back over previous months.

"I couldn't just stop immediately. It took me about six months to cut down. I went from about a packet a day to a packet every five days, then a packet every two weeks, to like a cigarette a day. So it was quite a lot of determination, but I knew I was going to have the surgery."

Peter was scheduled for valve surgery at Wakefield Hospital in Wellington in October 2018. Suddenly everything happened quickly.

"I was full-time working and a full-time parent, and all of a sudden, bam, 'here's your surgery and oh sorry, you can't work for the next six weeks.' And this was going in to the Christmas period, that's a busy time for us."

The surgery brought with it some significant changes. In the end, unable to work during the recovery period, Peter had to quit has job and go on the job seekers allowance. There were also changes to family life.

"At first the little ones didn't understand that they weren’t allowed to jump on me. They were starting to think, why doesn't he want to hug us, why isn't uncle lifting us up? So, it took them a while to understand, but I'd come out of the shower and show them my scar and they've realised "Uncle's got a mamae (wound), so don't touch uncle's mamae." Every now and again they play with it or they have a look at it. But it has stuck and now they climb over my legs, not my middle!"

Peter says the strength and support of his partner and family helped him through the surgery and the recovery period.

The family has recently moved to Gisborne and Peter's working hard to maintain his health.

"It has changed my lifestyle quite drastically, trying to make sure that my heart is good and the valve is working, plus my diabetes, insulin and dietary requirements and this, that and the other. It is a bit of a struggle. It is quite complicated actually, if I get an infection it takes my body a long time to heal from it.

"It's been an up and down journey," he adds, talking about the rheumatic heart disease. "But at the moment I've got that sorted, I'm now working on my other health complications – my diabetes. I'm trying to live with that comfortably in terms of food, sugars and sugar levels."

"We need to talk about heart disease"

If there's one thing that Peter's learnt from his journey, it's that families need to have open, honest conversations about heart disease and the impact it has.

"My advice would be to open up and talk about heart disease, especially us Māori and Pacific Island people. It's so funny, because we're quite loud and vocal but when it comes to things about ourselves, it's very much, 'Oh no, I don't want to talk.' We're a closed book."

Peter realised his own family hadn’t really talked about heart disease until just prior to his surgery.

"My younger siblings always knew I had injections for my heart, but they never knew what was wrong with it. It wasn't until I was coming up to my surgery and I needed to prepare my siblings and my family just in case something happened. And I had to explain what I can’t do and why I have to have this surgery. It kind of put things in to perspective for them too.

"If you're not 100% knowledgeable about what's going on, ask about it. I had to, just so that I could understand it and I needed my partner to understand as well, so that we were both on the same page. Like I said about us Māori and Pacific Islanders, we're very much loud and vocal but we're also a bit stubborn. So my advice is to open up and talk."

 

Shared November 2019

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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