I was diagnosed with Hypertrophic Cardiomyopathy about 3 years ago, and after several bouts of arrhythmia in the last few months, my consultant said I needed an ICD as a precautionary measure. I was a little apprehensive about it, but decided to go ahead. I was very nervous the day I went into hospital to have it implanted, but I needn’t have worried. Everything was explained to me before I went to theatre, and by the time I was given the sedative, I was quite relaxed. The operation took about an hour, and I didn’t feel any pain at all, although I was awake, but sleepy. Shortly after I returned to the ward I was given a cup of tea and something to eat, then slept for a couple of hours. The ICD was checked, and I had a chat with the surgeon, and was given some strong antibiotics to take for 3 days, then I was allowed home. The first night, I had trouble getting comfortable enough to sleep, but by re-arranging my pillows, I found the best position. I had very little pain after the first 24 hrs, and felt fine.
On day 4, I woke up with an itchy, red rash on my chest and neck. I rang the hospital day ward and they asked me to go down so they could check it. After a discussion with the surgeon on the phone, the nurse said it was probably an allergy to the iodine solution used in theatre, and suggested I get some hydrocortisone cream and some Piriton from the pharmacy. After 3 more days, the rash was spreading rapidly across my chest and down my left arm, so I rang my GP. He sent a prescription for stronger antihistamine called Fexofenadine to my local pharmacy. The rash, which originally looked like prickly heat, had become a purpley-red mass, and itched like mad. It took 4 more days before it started to fade and become a lot less itchy, I took the antihistamine for a week, bathed the area with tepid water and a mild cleanser and moisturised with a non-fragranced lotion, and after 2 weeks, it had disappeared. Apparently this kind of reaction is fairly common, but my concern was that it was caused by the implant, and it might have to be removed. If anyone is worried about any kind of reaction after any operation, call your GP or health care professional straight away to make sure it’s nothing serious.
Hi kelebek09 - thank you for sharing your experience of the rash following your ICD implant. I too have a diagnosis of hypertrophic cardiomyopathy with accompanying problems from arrythmias. I was diagnosed 3 months ago only, and my cardiologist is still working through the process of tracking and understanding the frequency, patterns and impact of the different irregular rhythyms that I get. So I have not yet reached the decision point whether I need an ICD or even a on-demand pacemaker.
But 2 weeks ago, as part of the journey in understanding the frequency, patterns and impact of the different irregular rhythyms which my heart elaborates, I had a Reveal Device implanted under the skin over my left pectoral area. It is basically a long-term Holter monitor, which can track my heart rhythyms for up to 3 years. I had already twice worn the regular Holter monitor for 7 days each time, with the irritating stickers on the skin, but more information could be collected from this long-term Reveal Device (also called ILR, implantable loop recorder). Once sufficient information on my irregular rhythyms is gathered, we will be better able to decide if I actually need an ICD or a pacemaker.
But it has been useful to me to know about the skin rash you had after the ICD was implanted. Do you have to take a beta blocker (like bisoprolol)? I am on bisoprolol to suppress some of the arrythmias and recently the dose was increased as the previous dose wasn't suppressing them adequately. However, increasing the beta blocker took me a month to recover from the extreme fatigue and weakness. I am only now nearly back to my previous level of energy and strength. It has not been fun at all, the past month!
I know how nervous I was about having the ICD implant, but I wanted to reassure anyone who is trying to decide if they should have one. It's early days yet, but apart from the rash, so far so good. I've also had the Holter monitors on several occasions and my skin reacts to the stickers as well. I think I must have sensitive skin now. I had radiotherapy on that area a few years ago which one doctor said might have had an effect, but if I have any more procedures I will make sure they don't use anything iodine based. I've heard of the Reveal Device, but it's not something that was ever suggested to me.
I was given Bisoprolol 2.5mg and Lisiniprol 2.5mg when I was diagnosed, but last time I was admitted to hospital with arrythmia, they decided to stop the Lisinopril as it seemed to be lowering my blood pressure too much, which resulted in me fainting. That's when they decided to do the ICD implant, as a precaution. I noticed my blood pressure and heart rate were more stable about a week after I stopped taking the Lisinopril, and I was fine for the 6 weeks I waited for the ICD. I have had no problems since then, and I do have a little more energy. I am also sleeping better. I was waking up several times a night and having nightmares, which caused my heart to race when I woke up in a panic, then I took about an hour to calm down and get back to sleep. A good night's sleep does make you feel better.
I hope it doesn't take too long for your cardiologist to work out which drug or treatment is best for you, but if you get to the stage where a pacemaker or ICD is an option, it is certainly worth considering. As I say, it is early days for me yet, but I am feeling quite positive now. Perhaps it's partly psychological, knowing I've got back up 24/7, but I do feel more relaxed. I wish you well.
Thanks for your response. I'd been in and out of A&E with tachycardia for several months, and after I blacked out at home one night I spent 4 days in hospital before being told I needed an ICD as my risk level had increased. I had the implant a few weeks later. The rash was probably the worst of the experience. The itch drove me mad, especially in bed when I got warm. I was reasonably fit and took long walks twice a day with my dog, and spent a lot of time on my garden, so it came as a shock having to slow done for a while. I had the op in march, and I'm now getting back to something like my normal self. I decided to replace my garden fence a few weeks ago, so had 8 big panels delivered from the timber merchant's and set about painting them before I get someone to slot them into the posts already in situ. I've done one most days, both sides, 2 coats of paint, and it's taken me a week and a half, but I've done it! I'm feeling quite pleased with myself as not so long ago I had to have someone to hang my clothes out on the line and push the vacuum cleaner round. I don't overdo it, but it's nice to be able to do things for myself again, even if it takes a bit longer. Good luck getting back to your own fitness level. Mandy.
I felt a bit nervous the first couple of weeks after having my ICD, and with not being able to drive or do many of the things I'd normally do, I wasn't very happy, but after a month or so, I got my confidence back and started doing a little more each day. Three months down the line, I've all but forgotten about the ICD. I take my time and do things bit by bit and if I get tired, I stop for a while and have a rest. I used to work for patient transport and I've seen too many people trying to do more than they should, and end up back in hospital. I've also seen people who are scared to walk to the end of the road in case they collapse. It's a balancing act, but once you've worked it out, you'll be surprised what you can do. I'm really hoping if things go well, I might actually go on holiday next year, but that depends on the covid situation, rather than my health or confidence. Take care and stay positive. 👍 Mandy.
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