Q: What practical issues have you encountered?
Responses with name, age at SCA and time since
Michelle, 43, 5 years
Stewart, 53, 3 years
Having several driving bans – difficulty in getting to work
Lee, 37, 5 1/2 years
The ICD took a lot to come to terms with. In my angry stage of recovery, 3 to 6 months, I just wanted to rip it out of my chest, I felt out of control and scared this thing would shock me at any moment, but since, I rarely feel it. It sits perfectly down that it has found a comfortable place, I sleep well with it, and only occassionly feel pain when my seat belt rubs on it in the car. Driving ban was hugely annoying. DVLA are terrible! They are extremely slow and eventually I received my driving licence back within 9 months. First drive was extremely scary, especially being alone with strangers, my thoughts were ‘what if I have another SCA, I will be with strangers, will people know where I am?’ Now so happy to just do it. Tiredness is always an issue, but just try to rest more, ignore anybody else, if you need to, just do it. Medication has been a problem, unfortunately for my condition I am only recommended to have 2 types, one was not successful for me, and the other has been difficult to obtain by pharmacies, so every time I need a supply, I do go through the worry of topping up.
Judy, 39, 3 years
Last year my beta blocker dose was doubled and I found I couldn’t exercise for 2 minutes before I became short of breath and legs ached. My BP and heart rate were also ridiculously low so I researched alternative supplements. I halved my bisoprolol and added Hawthorn and COQ10. I can exercise again and so far am arryrhmia free. I wouldn’t suggest anyone tries this as could be harmful but I do believe in researching and educating ourselves and questioning docs re medication.
Michelle, 42, 4 years
Regular tiredness, driving OK, but have to stop pain meds 24hrs before as illegal to drive with morphine in blood stream.
Brenden, 56, 4 years
Driving ban, tiredness, hard to wash, do hair etc after s-icd operation
Carly, 34, 1 month
Tiredness, but could be age related ( almost 76)
Maureen, 68, 7 years
Not being allowed to drive for 6 months is a problem. Still early days for everything else.
Joe, 52, 4 weeks
I had a driving ban for 6 months which ended up being 8 months due to all of the paperwork. I also have an ICD although I don’t find this has affected me in any way at all. I’m tired all the time but I put that down to having a busy lifestyle more than anything.
Imogen, 21, 2 years
Tiredness and fatigue
Dawn, 48, 3 years
Driving ban. Fatigue. ICD is uncomfortable in hot weather
Lisa, 35, 4 months
Mark, 56, 14 months
Tracy, 50, 3 years
Driving ban for 6 months
Joanne, 48, 23 months
Driving ban, S-ICD infection. Fatigue in first few months.
Clare, 31, Almost 5 months.
Getting used to the meds took a good 6 months . Fatigue/tiredness
Michelle, 50, 1 year
I couldn’t drive for 6 months. Lucky I had people pick me up for work as no buses. I still get very tired and do worry that I will fall asleep driving long distances as I do now when watching TV.
Robyn, 57, 18 months
Memory issues affect everyday life
Kym, 40, 3 years
I get tired a lot
Sue, 51, 8 months
My driver’s licence was revoked for just over 2 years. Inconvenient but my wife took over during that time. My licence was renewed in July, 1997 and remains the case today.
Mark, 46, 23 years
2 year driving ban when ICD fired 3 years ago
Graeme, 36, 10 years
I was banned for 6 months, i do get tired if i push myself too much
Lynne, 47, 21 months
Julie, 31, 8 years
Pat, 51, 15 months
Driving ban was very limiting we live in a rural area and needing a driving licence to work put added pressure on my family. S-ICD the physical placement and mental time bomb is frustrating to get used to fatigue at 33 is a major challenge and how that in turn affects mood
Ben, 32, 1 year 2 months
I no longer drive and although I had no issue with my ICD I am struggling to get use the S-ICD
Lisa, 40, 7 years
None really. From a woman’s perspective the pacemaker is uncomfortable with regard to bra straps etc!!
Anon, 56, 15 months
2 driving bans, ICD travel complications, one arrest whilst overseas on holiday, higher travel insurance costs, my children facing up to possible genetic links, tiredness each day.
Andy, 51, 5 years