Staying positive

A diagnosis of "idiopathic cardiomyopathy" meant that doctors couldn't find a cause for Darren's heart failure. But he's overcome the uncertainty to make sure he's living his best life. Staying positive.

At the age of 50 Darren was living a very active lifestyle. He had a physical job working in a bike shop and cycled the 30km commute to work a couple of times a week. He also regularly competed in 50 and 100km endurance cycling events.

However in 2017, over the course of a few months, he began to notice a decline in his fitness.

"When I was walking the dog, small hills that I was easily able to walk up before, stopped me in my tracks and I wasn't able to get up them. I just put it down to the fact that I wasn't fit enough or there was some other problem. I just kind of put it to the back of my mind."

However, the symptoms continued until he couldn't ignore them any longer and he went to his doctor.

Because Darren had a history of asthma, his GP first suggested he start taking his inhaler again to see if that resolved the problem.

However, his symptoms continued, so a few weeks later Darren went back to his GP. He was referred for a chest x-ray and, when he returned to his doctor for the follow-up appointment, he was also given an ECG (echocardiograph). He was shocked by what came next.

"The doctor said, 'I think it's your heart so you're not driving any further, you are going to hospital in an ambulance.' It felt a little bit ridiculous because I felt fine. But – long story – they did put me in an ambulance and I had to ring my partner and say, 'Oh remember that thing I had been telling you about, well it's my heart'."

Further investigations at hospital

On arrival at Waitakere Hospital Darren had blood tests and an echo test. The results showed that Darren's ejection fraction (a measure of his heart function) was poor. The doctors told him he had cardiomyopathy and was in heart failure.

"They said that my number was 17% and the kind of normal figure is 50–60%, and because of this I had lots of fluid built up. It started to make a whole lot of sense that I was having trouble breathing and the muscles weren't working properly because there was all this fluid, some of it was on my lungs and I couldn't get enough oxygen to my muscles."

Darren was told he would be in hospital for a few more days while he received medication and had a few more tests.

He was put on a diuretic to get rid of the fluid build-up and also prescribed beta blockers and ACE inhibitors to help his heart function better.

"I couldn't believe there was so much fluid in my body without me noticing," Darren remembers. "Within that first few hours I was getting rid of all the fluid and I could immediately feel that I was able to breathe a lot easier and I felt a lot better."

Understanding the cardiomyopathy diagnosis 

Meanwhile, as some of the physical symptoms began to improve, Darren started trying to find out as much as he could about his cardiomyopathy diagnosis. 

"The next few days were quite difficult because I was waiting for the doctor to turn up (on the ward round) and you don’t know when it's going to happen. Then, when they do turn up, you're trying to get as much information as you can. You try and listen to what they say, but you've also got lots of questions at the same time. I had so many questions because I had no knowledge. There are no heart problems in my family or anything, and I didn't really know much about the heart." 

At the same time, the clinical team were trying to discover the cause of Darren's cardiomyopathy. 

"They were trying to find a reason as to why this happened. They asked me lots of questions, but they couldn't really find a reason. Even after I eventually had an MRI six weeks later, they were never able to find a cause for what had happened." 

Darren was told he had "idiopathic dilated cardiomyopathy". The word idiopathic means 'unknown cause', meaning the doctors hadn't been able to find a reason for his cardiomyopathy. He found this frustrating but also, in a strange way, reassuring.  

"In a way it would have been good to know, but at the same time I thought if they don't know then in a way that’s easier because I can't say I wish I had done this, or I wish I hadn't done that."

Post diagnosis uncertainty 

The initial period following the diagnosis was filled with considerable uncertainty.  

"When they gave me the diagnosis, they weren't really sure how much my heart function would return to or what I'd be able to do. I thought that I wouldn't be able to ride my bike or take the dog for a long walk or things like that – that was the point I was at. I also picked up the flu too, so it was pretty horrendous." 

For the first time in his life Darren began questioning his own mortality. 

"You don't usually think about how long your life's going to be, but that's the kind of question that runs through your mind. I thought "Am I only going to live to 70 or less?'" 

He also lost his job because of the uncertainty about the extent of his recovery.  

"In that job I was on my feet all day. When I was diagnosed, I didn't know when I was going to be able to go back to work and the boss couldn't hold my job there so he let me go, which I wasn't entirely unhappy with because I wasn't particularly happy there." 

Instead of worrying, he decided the best thing he could do was be as optimistic as possible and get on with life.   

"I thought I've just got to enjoy life, there's no point getting down about it and getting maudlin. I decided to do everything I could to get myself back to the best possible point and be hopeful that I would make a good recovery. You've got to have a positive attitude."

Six months after diagnosis Darren has a new normal 

"There was a six-month recovery period I would say, but pretty much since then I have been lucky I've really been able to go back to normal. l haven't really felt restricted," Darren says.  

In the end he decided against returning to work, but continues to stay active by walking and cycling and spending time with his partner and foster daughter. 

"Since hospital I've been on the right medication and generally my life has been much less stressful because I haven't been working, so I haven't had any sort of physical problems since then."

These days Darren's heart function is back to around 40% and he no longer has the symptoms on a regular basis. 

"I see my doctor every six months and normally they give me the drugs and they ask me how I'm feeling. There's no point not being honest but I have got nothing to report really."

Emotional support 

Darren's recovery was aided by good emotional support from a number of different sources.  

“It goes without saying that Sandra (his partner) and my immediate family were really, really good and really supportive and everything. But also my friends too. People I haven't seen for a while, still ask 'how's your heart?'. So I definitely knew I had a lot of people on my side and that was great." 

He was also thankful for the support of the excellent local heart failure nurse who helped him through the early stages of recovery. 

"I was really lucky that I could basically email this lady or even text her and she was fantastic," he says. 

He also got support from an online cardiomyopathy Facebook group.  

"That's the kind of support from people and that definitely feels good from people who have been through the same thing." 

Lifestyle changes 

Daily medication aside, Darren says he's lucky that he doesn't think too much about his heart condition on a regular basis. However, he has made some lifestyle changes to stay healthy. 

"I'm aware it's not a good thing to put my heart under more strain than it needs to be. So I definitely have cut down my drinking, even though it wasn't a problem. Also, for a while I was on a fluid restriction so I was a little bit more careful around salt in food which I still am. But once I got to a stable point, I realised that I could pretty much live my life the way I wanted.”

That said, he’s happy to have the odd splurge now and again.  

"If we're going to go to a party I would have a few drinks and I wouldn't worry about that because I know I am probably not going to do it again for another few months. I know that in the long term, as long as I don't do it all the time, it is actually not going to damage my heart and it's actually kind of good for me mentally to have a bit of fun and a bit of a blow-out."

He's also entered some longer cycling events. 

"Earlier this year I did a 60km event and I went faster than I thought I would and, most importantly, I felt really good afterwards and recovered very well. I am a little bit slower now because of the beta blockers but I’m happy with that. I'm 53 and although I like to race, it's more important just to get there and finish the race." 

Message to others

One important message Darren has for others is to get any unusual symptoms checked out as soon as possible – no matter how fit or healthy you think you are.  

He said as much in a Facebook post about his experience with cardiomyopathy and the result was overwhelming. 

"The response I had from that post really blew me away. People were really stunned that it had happened to me because they know how fit and active I was, but sometimes that’s the way these things happen." 

He also says it's important for people to keep active and stay positive. 

"You get given this, not a death sentence, but a 'question mark sentence'. You don't know what it means. But I'd say if you have the right attitude and do what the doctors say, which includes staying active (or getting active if you're not active), you can turn it around. That would be the main message I suppose. That and don't lose hope."

Shared May 2020 

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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