ICD or not ICD

[Straitman]

I was diagnosed with Heart Failure and Arterial Fibrillation exactly two years ago. After an initial 9 day hospital stay, I was referred to my local community Heart Failure Team. During the next few months my allocated HF Nurse worked with to change my medication from what I’d left hospital with to a package that included the ‘Four Pillars’ which, continue to be what I take.

Fifteen months ago, I was referred for an Echo -Cardiogram to establish what affect the medication was having on my condition. This coincided with my being referred back to my GP by the HF Team. The initial effect of this seemed to be that my results were slow coming through. However, I got in to contact with my GP practice and they tracked them down. I subsequently received a letter from a cardiologist indicating that I would shortly receive an appointment and, one of the aims of that would be to discuss fitting me with an ICD. This was because the ‘Echo’ had shown that my Ejection Fraction was no better than 25 to 30%.

Once more there seemed to be a hold up on this appointment coming through. Whether this was due to industrial action in the NHS or what I don’t know. I just seem to have fallen into some sort of black hole. Once more, I contacted my local GP practice and they once more succeeded in getting things moving again.

I ultimately met with the cardiologist earlier this year and, as promised we discussed implanting and ICD at some length. I have to say that he tended to highlight the disadvantages of ICDs. However, he referred me to one of his colleagues for a further discussion . This happened quite quickly.

The doctor on this occasion was far more upbeat about ICDs, claiming that 96% of people had no problems with their ICDs.

Between these two appointment, I spoke to two people who had very negative views about the ICDs they’d had implanted.

Now I should explain that I was for many years a Quality Assurance Manager. As such, I recognise that the loudest voices come from those with something to complain about. Positive voices are rarely heard. Trust me, that’s true.

I have a decision to make in the coming weeks and it strikes me that the readers of this post who are the best people to consult whether I should have an ICD fitted. What should I do?

[Hanibil]

Had mine implanted 2019 to be honest I don’t even realise I have it, I was offered it and accepted without hesitation, any thing that helps me keep alive is fine by me.

[56dick19]

hi I had mine fitted July 17 and haven’t had any problems with it. I t was fitted with in a few weeks of them deciding I needed one

[Pouchielou1972]

I had mine fitted in 2022 and no problems at all with it. I had no hesitations about getting it fitted, as it's like having a paramedic with you constantly. These days I often forget it's there. It's there as a preventative measure in case it's needed to save my life.Granted, in the first few weeks, it's a little tricky to get used to, as you're more aware it's there as the wound heals and you can't lift your left arm past shoulder height for the first 6 weeks, but then after that, life settles back go normal.

[Peony80]

My husband had an ICD fitted in Bart’s after an emergency admission. The device monitors him remotely and on the one occasion since fitting when he had a rapid heartbeat, it worked to manage the situation. The incident was picked up by the monitor and he was contacted by the hospital the next day. It is very reassuring to have the device as the ‘emergency’ was life threatening.

[BeeBee79]

My own experience with an ICD is positive. I was in a lot of pain after having it implanted which I felt was played down by the hospital and I’d say it took me a good few months to get used to the extra “weight”. I known the tyre not heavy but it feels similar to having something in your shirt pocket .

I honestly have grown to love Bob (my youngest child affectionately calls it) and the peace of mind it gives me is worth its weight in gold. If they suddenly said tomorrow that I didn’t need it any more, I would be distraught and insist we keep it. It may be bc of my own heart experiences but I wouldn’t be without it 🫶

[antifolate]

Hi Straitman

I am also 76. I suddenly had an onset of severe heart failure (EF 18%) 8 years ago although it took 3 months to see a cardiologist. Once diagnosed they immediately recommended an ICD. It has served me well since it was implanted. I have once been appropriately shocked by it. However, its main use has been to maintain a basic pulse rate when this falls too low. I don't think that my sudden prolonged drops in heart rate had been noticed during the previous investigations. The ICD has never been a problem for me and I feel that it has really helped me to become generally much more stable and less anxious.

[honeybubs]

Ditto what other people have said it’s a life line and peace of mind. The procedure went well they don’t put you out but give you something to make you sleepy and relaxed it was really pleasant in fact for me. They numb the area so you can’t feel a thing. After this wears off at home it can be quite painful and takes weeks/couple of months in my case to stop hurting as it affects your muscles underneath as well as your skin to heal and get used to it. I’m now a year later more relaxed in knowing I’ve got it and it could save my life one day. I’m thin so I’m still aware of it but I do forget it’s there most of the time. Just get clothes that button up not the ones over your head as you can’t raise your arm for weeks to put them on incase it dislodges the leads. This is all info I didn’t know before I had it done and I wished I’d been told about the after pain. It’s all worth it in the long run and they wouldn’t have offered it to you if you didn’t really need it so go ahead and have it done. Good luck and I’m sure it will all go to plan. X

[DaveTR]

I personally would go for the ICD.

I have AF due to Dilated Cardiomyopathy (Enlarged Heart). After an Electrical Cardioversion for AF in 2016, continued bouts of AF and an EF of under 30% the cardiologist suggested I have an ICD fitted.

I had it fitted in 2017.

The ICD has delivered therapy and corrected dangerous heart rhytmns hundreds of times over the last 7 years. It has also given life saving shocks (Defibrillation) on a number of occasions now. I have been told without it I may not be living.

[Gordon_N]

Straitman - I had an ICD fitted 4 years ago after a cardiac arrest (ventricular fibriation) - its life insurance : it's already saved my life once. why wouldn't you have it? the alternative?

[polenta]

I had a CRT-D inplant in 2015 and battery change this past November, and I have to admit that its a very easy procedure that gives me peace of mind knowing I have a back up incase of SCA. I was always told that if your EF is below 35%, you are at a greater risk of SCA, so it was an easy decision for me. I forget that I even have it and just go about doing things that make me happy with really no restrictions.

[StayStrongOver60]

I was diagnosed with severe head failure and LBBB plus dilated cardiomyopathy in Feb 22. Had an CRT pacemaker fitted in May 23. It has transformed my life. Although the procedure was very painful due to the sedation not working I would recommend it 100%.

[ShaneDullerhit]

I agree you should go for it. I’m slightly confused as to why they’d suggest it and it be optional and don’t understand a lot of the items you mention.

had an ICD fitted about 8 years ago. It’s sort of mildly uncomfortable. I’d say 95%+ of the time I don’t notice it at all and then very occasionally I think about it and find it a bit annoying but in terms of actual physical discomfort, at most it’s a one out of ten. However, this was never enough to question having the device fitted

After nothing 6 or 7 years, this year I’ve had 3 bouts of tachycardia (c 240bpm) which they tell me were life threatening. I was paced down twice and shocked once. I was told it was a precaution when fitted and never thought it would be called upon. This year has told me something different and I’m so glad to have it!

[Straitman in reply to ShaneDullerhit]

It’s weird Shane. When the subject was originally all for having it done. Must admit that, I’m a technophile and, if this was going to do something positive, I was all for it. It was the first cardiologist who was rather negative who poured cold water on my original keenness. However, it was he who referred me to his colleague (The surgeon who will carry out the op.). He was much more positive. Perhaps they saw me as a ‘bit of a wobbler’ or perhaps, it’s a ‘good cop/bad cop thing’.

[Blackknight57]

thanks for the question, I’m in the same dilemma , my lvf is 38%. Cardiac has said it won’t improve a lot. I’m still on the fence, but more on the side of getting it done. Been told a 4 month waiting list

[Straitman in reply to Blackknight57]

Thank you for your response BK57. The cardiologist I saw recently said that it won’t improve my ejection fraction, my shortness of breath or improve my quality of life but, it would save my life. That strikes me as a pretty good reason to have it. Got to see the cardiologist in three months and there will then be a three month waiting list.

[Blackknight57 in reply to Straitman]

They explained it was an insurance policy. Draw back is you cant drive for 6 month IF it goes off.

Someone said it kicks like a mule.

[Hidden]

I had an ICD implanted in 0ct 23 and I've had absolutely no issues what so ever it was fitted as a precaution after an unexplained cardiac arrest at my last echo my EF was57% which is apparently in the normal range so I suppose you don't have to be ill to have one but it's good to know if it happens again it's there.

[David_A]

I had mine implanted Nov 2020 and I've had no issues with it.

[Jonathan_C]

I know (or think I know) that a pacemaker is different - I had a pacemaker put in two weeks ago and two of the biggest "reflections" I have since getting it is how many people younger than me have them (i am 50 so hence the comment) and i think literally every single bit of feedback about other peoples experience I have had is positive.

you may also be interested in this lady's videos during your recovery youtube.com/@ginahoegh/videos

[Xinzang]

I'm waiting for a sub-cut ICD and will be very releived when it's in place! I'm in Devon, UK and have no idea how long the waiting list is. EF at 35% in February.

[RMG48]

I am 76 also and have an ICD since September 2023 and never had an issue and I feel safe having it.