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Dublin: 18 °C Thursday 18 July, 2019
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My life with heart failure: Cramps, pain, palpitations - then the wait for a transplant

Andy Roche has been on the active waiting list for a heart transplant since June 2015. He writes here about coming to terms with over a decade of health challenges.

Andy Roche

IT WAS EARLY 2003 when the penny finally dropped that my underlying health needed a serious examination. A positive attitude is a great thing when you are coping with illness but in my case, and my story here is not unique, this positive attitude had morphed into denial.

For many months, probably from mid-2002 onwards, I was experiencing severe cramping and abdominal pain particularly after eating. In spite of my wife’s exhortations to have it all investigated I was toying with various diet adjustments and confining myself to rice as a staple – a variation on baby food if the truth were told.

A good friend of mine who is a gastroenterology consultant at Tallaght Hospital brought me in to have a look from that perspective. He very quickly concluded I had been kidding myself and that my problems were driven by fluid accumulation. From there the real journey started. A cardiologist arrived and talked over my head to a nurse and left.

Shortly afterwards, one of his junior colleagues arrived. “Take these,” I was told. “What are they?” I asked.

Diuretics, you need to take them – you have heart failure.

“What’s that?” It was duly explained as a malfunction, in my case, of heart pumping capacity which was reducing my capacity to pump blood from the left side of my heart and this was the underlying cause of fluid retention – hence weight gain and all the cramping I described. Not the ideal way to have the news broken.

My reaction was combative and there followed an exchange where I asserted “failure” was a daft label for it. But I took the tablets anyway and after an aggressive course of these I lost almost 10 kilos of fluid and negotiated my discharge.

Entering the next stage

Some time coming into the summer of 2003, we entered the next phase. I had my first encounter with Atrial flutter – palpitations, shortness of breath – which was addressed with a cardioversion procedure. That held for about a year until I got another “wobble” – this time cardio arrhythmia, irregular heartbeat.

I arrived at St Vincent’s Hospital this time by ambulance and met cardiologist Martin Quinn for the first time. Martin has performed a number of cardioversions over the years, with interventions for ablation procedures by David Keane – and I doubt if there is a better team than these guys anywhere.

They have given me a manageable quality of personal and business life over all the years, and they are willing to explain what they are doing. I am one of the lucky ones here.

If the story could end there, that would be great. Unfortunately, this condition is progressive and is now in its “end stage”.

In between the various cardioversion and ablation procedures, I did enjoy a decent quality of life with medication support and a bit of self-management. However, the gaps required between procedures began to shorten and the quality of interim recovery began to diminish.

I likened it to snakes and ladders where the snakes were getting longer, the ladders shorter and the gaps between them were reducing. Options were tried with a pacemaker which did not deliver the outcome hoped for – a major contributor here was my underlying intolerance of beta blockers.

End game

At end of 2014 I presented to Martin Quinn in a bucket – “hands up, I am losing here”. Martin brought me into hospital for review. He did some things with IV diuretics but didn’t get the outcome needed. He then introduced me Prof Ken McDonald who said “Hmmmm” – a worrying sound from a consultant.

I was brought back into hospital for an IV procedure with a magic potion called Levosimendan. Shortly after this. I was looking for someone to play a game of hurling with.

Full of the joys, I duly went back for my review meeting with Prof a couple weeks later. When I had finished thanking him profusely, he said we needed to discuss the longer term.

This procedure would not deliver indefinitely and I was an ideal candidate for a heart transplant, I was told. My heart withstood that shock and the research started. It didn’t take me long to conclude in the words of my GP who is also a good friend: “It’s a no brainer, Andy.”

So here we are. I have been on the active waiting list for transplant since June 2015. I believe I am one of the very lucky ones and I am not sure everyone in my circumstance would have as upbeat a story or as ready access to top class professionals as I have enjoyed.

I have tried to keep a focus of “business as usual” during the waiting time. To be honest, though, the year has not been kind to me in terms of health and my cardio performance has deteriorated. I have a seriously curtailed social life and I manage to do a couple of days a week of freelance business consultancy, which has become increasingly tiring.

What keeps me going? Family and the support of friends who keep in touch. This can’t be said without sounding clichéd, but I have support from my wife of 38 years that just can’t be described adequately in words.

We live in Dublin where our daughter also lives and works and our son, his wife and our three beautiful grandchildren are only a few hours away in Northern Ireland. I don’t know where I’d be without their support and humour.

Andy Roche is a business consultant from Dublin.

The Heart Failure Patient Alliance, a new support for patients living with heart failure and their families, will be officially launched in Dublin by sport pundit and former GAA footballer Pat Spillane on 15 April and in Galway on 16 April.

The alliance is an initiative by the Heartbeat Trust and Croí charities, and supported by pharmaceutical company Novartis.

To register your attendance for Dublin, call 083 465 6098 or email info@heartbeat-trust.org. For Galway, call 091 5443100 or book online at www.croi.ie/heartfailure. Attendance is free.

Read: Life after an election: ‘The hurt, the hard work and signing on the dole’

Read: Struggling to cope with work? Some tips on looking after yourself (and others)

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Andy Roche

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