Why I can dream again

8th August 2018

This article is taken from our July issue of My Life magazine. You can read the whole magazine here, or to subscribe to receive a free copy via email or post please sign up here.

Being told he should have an ICD was a landmark that things were getting worse for Andrew Kaponi

“Deep down I, probably like others, thought I could beat my dilated cardiomyopathy and if not beat it, then at least control it. So when I was told I should have an implantable cardioverter defibrillator (ICD) fitted, I felt numb,” says Andrew Kaponi, 42, from London.

The father-of-two was at high risk of having a cardiac arrest and was told he would probably have an sudden cardiac arrest (SCA) in the next five years.

“When I was told I should have an ICD I felt numb. It meant so much for me. It meant this condition I was living with and having to adapt to,  was not just an inconvenience and a life changer, but also a danger to my life.”

Andrew swiftly set about finding out everything he could about ICDs - speaking to other patients, inspecting the devices and even speaking to people who worked at the manufacturers.

“When I went for my consultation, it was a bit like that advert where the car salesman is trying to tell the customer all about the car’s performance, while the customer is finishing his sentences because they know it all!” he recalls.

However, Andrew was pleasantly surprised to learn that home monitoring means wherever he is in the world (bar a few countries), there will be a team monitoring his ICD and knowing if something is wrong.

“That was an “oooh” moment for me,” he admits, “so not only was this thing potentially going to save my life, but also, there are people somewhere out there, who have got my back.  It’s like a double safety net - cool I thought!”

Andrew admits he is prone to doom and gloom and in the run-up to his operation, went through a period of “mourning” his previous life and the fear he might not survive the procedure.

“I realise now how silly I was, but I took on board the chance of dying during the operation. Death didn’t scare me and it was more a practical thing, so I did a few things like leaving secret, but findable messages and memories for my family once I was gone.

“I also tried to sort out my affairs and say goodbye to people and visit things for the last time. I wanted to see everyone dear to me and I did pretty much. I also wanted to eat some of my favourite meals - which I did - and I went to church too.”

Andrew also prepared for if he “survived”, including buying loose-fitting shirts to wear post-op.

“On the day of the operation, it felt like I was preparing for an exam, so nerves set in and I woke up early and prepared myself,” he recalls. “I helped get the kids ready, fed our dog Alfie and walked the children to school, before I got on the bus to the station to get the train to St Bart’s Hospital. I gave the kids and my wife a huge kiss and hugs - thinking that, after all, it may have been my last.

Carrying my unduly heavy hospital bag, I set off on my green mile. On the train, I remember looking at
people thinking, ‘They’re going to work, thinking about their lives, oblivious to more serious things’. “I thought they should be happy, but they looked so miserable.

I had been one of them before, now I’m not - now my life is more complicated and in many ways, clearer.

When I got to the hospital it all changed. It felt like I was having an appointment for a standard matter and everything ran smoothly. I was very comfortable from beginning to end and have had dental work that’s been more painful than the ICD being put in!”

Andrew now says he was wrong to think of his surgery as a major heart operation.

“Of course it’s not a heart operation - it’s an implant of a device that has leads going into the heart. Evasive and potentially life-threatening, but not that complicated with today’s medical science,” he reasons.

Andrew chose to have his ICD fitted under local anaesthetic and sedation. The one-hour operation went smoothly and says he “didn’t feel a thing” when the ICD was tested.

Following a short wait - while X-rays were taken to see if the leads and everything were okay - he was discharged. However, by the time he returned home, the drugs were no longer working and Andrew had to smile through gritted teeth and kiss and hug his children as best he could.

“That evening was a mixture of happiness, discomfort, pain and an upset tummy - not the easiest night, but the happiness got me through it,” he says.

And in the days to follow, Andrew was grateful for the advice from our Cardiomyopathy UK’s support nurses that he was able to take stronger painkillers at regular times.

“The first few nights were tough pain-wise and I needed pillows to keep me propped up on my side,
(other side to ICD), but it did get better after a week. There was also pain and dizziness the first few days and I had to remember not to use the arm the side of the implant,” he reveals.

Most ICD patients give themselves at least a month to recover and Andrew also recommends staying as mobile as possible within the home and stretching, whilst taking care of the implanted side and resting as needed.

“The procedure went like clockwork and the wound is healing well. I’ve now got a lifesaver in me - a guardian angel - and a team behind it, who are keeping an eye on me.

“I might be part-machine now, which is pretty cool in my book, but it might mean that I’m here a bit longer and I might achieve my dreams; seeing my kids grow up.

“I hope that everyone who has cardiomyopathy and needs an ICD gets one. It’s a great thing to have. Yes, there are limitations - like you shouldn’t go swimming by yourself; scanners and magnets are bad for you and you can’t drive for a bit, but the upside is massive.

“But it’s more than an upside - the ICD means I can dream again and look ahead. It’s now time to get on with life - my new life.” 

Cardiomyopathy UK has recently published a new booklet about ICDs, available for free via download or post.

Request a postal copy or download a copy here