Q: What practical issues have you encountered?

Driving ban, having an ICD, fatigue/tiredness etc

Responses with name, age at SCA and time since

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

2 year driving ban when ICD fired 3 years ago

Graeme, 36, 10 years

Memory issues affect everyday life

Kym, 40, 3 years

Nil

Stewart, 53, 3 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

Tiredness

Julie, 31, 8 years

My driver’s licence was revoked for just over 2 years.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

None

Mark, 56, 14 months

Tiredness, fatigue

Pat, 51, 15 months

Having several driving bans – difficulty in getting to work

Lee, 37, 5 1/2 years

I was banned for 6 months, i do get tired if i push myself too much

Lynne, 47, 21 months

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

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

Driving ban. Fatigue. ICD is uncomfortable in hot weather

Lisa, 35, 4 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

Not being allowed to drive for 6 months is a problem. Still early days for everything else.

Joe, 52, 4 weeks

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

I get tired a lot

Sue, 51, 8 months

Getting used to the meds took a good 6 months . Fatigue/tiredness

Michelle, 50, 1 year

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

Driving ban for 6 months

Joanne, 48, 23 months

Driving ban, S-ICD infection. Fatigue in first few months.

Clare, 31, Almost 5 months.

Tiredness, but could be age related ( almost 76)

Maureen, 68, 7 years

None really. From a woman’s perspective the pacemaker is uncomfortable with regard to bra straps etc!!

Anon, 56, 15 months

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

Fatigue

Tracy, 50, 3 years

Tiredness and fatigue

Dawn, 48, 3 years

Driving ban

Michelle, 43, 5 years

Driving ban, tiredness, hard to wash, do hair etc after s-icd operation

Carly, 34, 1 month