Rebuilding our lives together: Joe and Rhiannon's story

Joe’s story

“The first time I saw Rhiannon, I knew I was going to marry her. She’s the most genuine person I’d ever met. We moved in together at 24, having only just met, really. In 2014, six or seven weeks into our life, I had a cardiac arrest at the fish and chip shop where I worked.

A colleague gave me CPR and I was taken to hospital. They put me in a coma for three weeks, and when I woke up, I was so weak I couldn’t even sit up. I’d had a complication and they had to remove part of my bowel, because it wasn’t getting enough blood and stopped working. I was also fitted with an ICD, to protect me if I had any more cardiac arrests.

Coming out of hospital, I did everything possible to get back to work. For a short while, I was learning the ropes of running a fish and chip shop. But I looked and felt very weak. So I stopped working.

At home, I couldn’t even walk up the stairs. I was in a wheelchair. I had no job. I felt like I’d lost everything.

In 2015, my ICD fired out of the blue. Rhiannon took me to hospital, and I ended up having multiple shocks from my ICD. The doctors said I was having repeated episodes of ventricular tachycardia (VT – a very fast heart rhythm, which can be life-threatening). I thought I was going to die. I ended up having lots more shocks.

They did several ablations, to try to stop the VT from happening. I was eventually diagnosed with arrhythmogenic right ventricular cardiomyopathy (also called arrhythmogenic cardiomyopathy or ACM, a condition where the walls of your heart can become weak).

I was also suffering from PTSD, so I couldn’t always tell whether the way I was feeling was the anxiety or my heart. At times I wished I’d died when I had the cardiac arrest rather than go through all this and have to live with a heart condition. It took years for me to recover.

I needed a job. I grew up with very little. It gave the motivation to keep going, to recover, to pursue my dreams. Now I’m 32, I run a couple of businesses, and I can take care of us.

We got married in July 2022. I’ve always wanted to share being a Baxter with someone. And I’ve found the love of my life. But the wedding? It wasn’t on my mind. I wasn’t well. I just wanted to sign a piece of paper and be done with it.

This whole ‘health transition' changed me. It took a toll on me and those around me. I lost a lot of friends.

I don’t believe in luck, but when it comes to our relationship, there’s no other way to describe it. I wouldn’t have survived without her

I’m only now starting to realise the impact my cardiac arrest had on other people. When I was going through it all, my brain was so busy coping, I never thought about anybody else. All I could think about was being the best version of me. I never stopped to think about what others were going through.

But Rhiannon and I have this bond, this unspoken strength. I don’t believe in luck, but when it comes to our relationship, there’s no other way to describe it. I wouldn’t have survived without her. Not just the cardiac arrest but also the recovery. The thought of doing it again, it’s unbearable.

Taylon, our son, has added a motivation to my life. I want him to have opportunity. And I want him to see me grow as a successful entrepreneur. I’m already so proud of him. I want him to be proud of me, too.

He’s now old enough to ask about my ‘superpowers’, as we call them, like the special machine in Daddy’s chest.

Walking is our favourite thing. We go on walks around the woods, near where we live in Welwyn Garden City. Even when it’s cold, even when it’s raining, we just love it. We go on little adventures together, too, which has played a significant part in my recovery.

I feel the skipped heartbeats sometimes. I’m not being stupid about my health. But I’m not letting it dictate what I will and won’t do. I want to create opportunities and experiences. This is who I am.

Not every day is a good day. I practice making the good days last. When I’m really stressed or upset, for a day or a week, I remember the good days, and I know I’ll be on the top of the world again. Sometimes I feel alone in this. But Rhiannon’s right there.”

What I’ve learned

My cardiac arrest affected other people, not just me. It took a while to understand what Rhiannon must have gone through.

Rhiannon’s story

“When I first met Joe, he was tenacious and full of life – something I soon grew to admire.

Shortly after we’d moved in together, Joe had a cardiac arrest. The doctors told me he may wake up and not know who I was – that he’d have brain damage and lose his short-term memory. I was still a short-term memory.

I told my mum what the doctors were saying. And she said, ‘Look, he may wake up and be a different person.’ It was terrifying. A part of me was in denial. But another part of me was adamant he was going to pull through and that everything would be okay.

When it happened, my best friend came to the hospital with me. This was just a few weeks into Joe and I living together, and I’d only met his sister, not his parents, not his brother. We were in this family room together, and I went around, saying, ‘Hi I’m Rhiannon’. Without my best friend there, it would have been overwhelming.

At the hospital I did what I could to take in what the doctors were saying and to support Joe’s family with the very tough decisions they had to make. Joe needed to be moved to a specialist hospital for further treatment, but there was a high risk he wouldn’t survive the journey. This memory has stayed with me as if it was yesterday.

When Joe got out of hospital, I took him to the local Christmas lights switch-on in a wheelchair, because it was one of his favourite things to go to and he’d rarely missed it. We just wanted to get back to our lives. It took a while before he accepted that he needed to recover. Now, seven or eight years later, his health is still a big part of our lives. Not a central or a defining part, but ever-present.

Living with the fact that my husband has a heart condition is difficult. It’s the smallest things. Like when my phone rings unexpectedly, and my initial reaction is to worry, when most of the time Joe is calling to ask where he’d left his phone charger.

Sharing coffee, having dinner, even watching a movie; those are precious moments not everyone gets

Managing fear is very hard. I never take small things for granted: walking the dogs as a family, sharing coffee, having dinner, even watching a movie at home. Those are precious moments that not everyone gets. I get emotional even talking about it.

Planning our wedding was quite stressful. There was a lot of talk of heart transplants in the months leading up to it, although thankfully, Joe didn’t need a transplant in the end. Three months beforehand, we went, gosh, we better organise something. It was lovely to celebrate and to say thank you to all the friends and family that had kept us going.

Joe’s condition can be inherited, so we knew there was a chance our son could have it. We talked about it a lot, trying to prepare. Thankfully, Taylon has just had a heart scan, which came back normal. I want him to grow up in a stable home, feeling safe and happy. And I want us to go on adventures together.

Putting myself first doesn’t come naturally to me. I work full time as a marketing manager. It’s a lot of responsibility to have people rely on me at home and at work, and it can feel heavy. I try to alleviate that by spending time with friends and family, and planning family adventures. We haven’t made it easy on ourselves with two crazy dogs and a toddler. But we wouldn’t have it any other way.”

What I’ve learned

Planning adventures with family and friends helped us recover and reconnect. It’s not always easy but it alleviates the stress.

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