ICDC Surrey is the support group for patients who have implantable cardioverter defibrillators, and their families. We are based at St Peters Hospital, Chertsey, but members are welcome from Royal Surrey County Hospital, Epsom Hospital, Frimley Park Hospital and East Surrey Hospital.
I was 49 when I was told I needed an ICD. I thought I was far too young to be wired up to a pacemaker. I feared that it would prevent me doing all sorts of things and that my life would change beyond recognition. A few months later, my 18 year old son was told he would also need an ICD. I was worried that he would advance straight to middle age and be unable to do all the adventurous, slightly risky things a young man should be free to do.
18 months have since passed and I have discovered that my fears for both of us were largely unfounded and we’ve adapted smoothly and with minimal impact on our lives.
When my need for an ICD and its workings were first explained to me I had three immediate reactions . . .
would I still be able to carry my iPod?
would I ever be able to go skiing again? And
how much would it hurt if it went off?
My concern about the iPod and ICD interfering with each other were soon answered in St George’s Hospital pacing clinic where I was told that as long as I didn’t lay one on top of the other, there wouldn’t be a problem. The same applies to my mobile phone. So the ICD didn’t bar me from enjoying the most crucial items of 21st century technology.
As for skiing, the doctor advised me to give the ICD a year to bed in and then I’d be okay to return to the piste. His comforting words were that, if I collided with something forcefully enough to dislodge my ICD, then the impact would probably be heavy enough to kill me anyway! I went to the Alps with my ICD a couple of months ago and thoroughly enjoyed the skiing. No collisions, no problems.
As for my third concern, my ICD was activated when I was walking up the side of a mountain in the Lake District about six months after it had been implanted. It turned out afterwards to have been an “inappropriate” shock which required the settings to be slightly altered. But at least I now know what it feels like. It wasn’t as painful as I feared, although I hope it doesn’t go off again any time soon. After a few minutes rest, I managed to walk back down the mountain unaided.
I attended a six week cardio rehabilitation course at St Peter’s to restore my confidence in taking exercise and accelerating my heart rate. I’m now back to regular gym sessions where I jog, cycle and swim. There are a few things I’ve had to give up. I was advised against vigorous, intense sports so wrestling, weight-lifting and rowing are all out. This has not been a great sacrifice to me, nor is it a blow to the 2012 medal hopes of the English Olympic team.
I’ve also visited Rome and New York. I waved my European Patient Identification Card to sidestep the metal detectors at each airport and then again at the Vatican, the Empire State Building and the Statue of Liberty. There was never a problem. The security staff recognised my predicament instantly in all cases though in the USA it was all taken very seriously (understandably so, in the circumstances).
And my son? I haven’t seen him for the last four months while he’s been taking his “gap year” world tour. He’s been to Thailand, Malaysia, Australia, New Zealand and USA. He went to the world’s longest and biggest beach party in Thailand, drove a camper van down the east coast of Australia and parachuted out of a plane in New Zealand. The only cautionary advice given by the Pacing Team before he left was to keep hydrated and avoid bungee jumping (because of the pull of the straps near the ICD). We also armed him with a list of ICD-friendly hospitals at each of his destinations, discovered on the Medtronic website. He sidestepped the security gates by waving his ID card, though in some cases the body-searches were a little more intimate than he would have liked. But, overall, the Icelandic dust cloud and the BA strike were as disruptive to his plans as the ICD. He’s had the time of his life!
I still think we’re both too young to be carrying pacemakers. But we’ve got used to them, got on with life and, weighing it all up, there are not many things you can’t do.