After living a very active and healthy lifestyle at the age of 56 i have had to have a de-fibrillator fitted. This happened after my hr went up to 260bpm after exercise. I was subsequently told that at some stage in the last 25 years i had suffered a heart attack.
I know its early days (4 weeks) since my de-fib was fitted but i am suffering from anxiety and my confidence has taken a battering.
Is there anybody out there who has suffered similar who could put my mind to rest that all the emotions im feeling are completely normal in the circumstances?
Many thanks.
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Tiny775
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Tiny, I like you had an ICD fitted in May at age of 60. Like you I had an active life style (cycled to work every day pre Covid). 3 weeks before I had cardiac arrest - no warning / BOOM. Two neighbours saved my life by giving me CPR for 15 minutes before paramedic cavalry arrived and shocked me back to life. On ventilator for 10 days, two weeks later had ICD and couple of stents. Apparently my arteries had been blocked for some time. No doubt you've had the ICD is you new guardian angel analogy. During stent insertion, my surgeon accidentally tripped the ICD and I got a bit of shock to say the least. I consider myself very lucky to alive and I have recovered well and come terms quickly with my new situation. I set about getting active again by walking then cycling. In sept I completed over 300 miles as part of BHF Mycycle challenge - I've kept going and should rack up 1000 miles and 2 x Everest during xmas. Hopefully this is an example of a positive outcome - sometimes I worry about twinges, but the ICD is my new insurance. Also, you're now on the cardio radar - you're being monitored! Slow gradual steps and your situation will improve. I was overwhelmed and surprised by the support and care I have had and despite being a cynical (grumpy even) so and so, I have surprised myself by how positive I've been. Maybe it's because I've had a second chance - there can be light at end of the tunnel, once you've gone round a few bends. All the best.
When I was first told I needed an ICD, I shed a few tears because I saw it as evidence that my heart was in an even worse condition than I had thought it was. I felt more vulnerable, more close to death. But soon I came around to the truth - that this was an amazing piece of kit that could save my life one day. Instead of dreading the need for the device, I became thankful for the consultants arranging one for me!
Nevertheless when I first had it fitted I felt a bit down, which I took as a normal reaction. But now, 3 months later, although I often think about my underlying condition, I rarely think about my ICD.
BTW I used to do mountain walks in Wales and the Lakes, and do runs through the countryside. But now, following my consultants advice, I just do long, often vigorous, country walks with my dog. I've stopped getting upset about this change by asking myself, if it's really SO bad that I might never climb Snowdon again - after all I've done it 20 times. When I go to the lakes and Snowdonia I'll still walk - but lower routes, and I can now enjoy the scenery instead of rushing through it.
Good to hear of your positive outlook - don't give up on Snowdon (or slightly smaller peaks) just yet.
I was particularly worried about going back on my bike and I came to the conclusion that a heart monitor would give me peace of mind and make sure I didn't overdo it - I discussed this with cardio rehab team and bought a monitor (Polar H10) which I initially paired with my phone on walks and then bought polar bike computer - so I can see my heart rate at any time - on hills I just keep my eye on it and if it creeps too high, I slow down a bit. So maybe a heart monitor could give you peace of mind on the hills?
HI Gordon, Its a good idea about the monitor. But my ectopics bring about crazy readings on my Garmin fenix, and even a pulse oximeter. E.G when I start moving quicker, my pulse drops to 50! I've learned that above a certain threshold of exertion I get a worrying tightness in my chest so, until I can do a proper cardio rehab class at a gym with an ECG, I will take it a bit easier with daily 3-4 mile walks.
Thank you Gordon. Like you i led a very active lifestyle. Last year i cycled Lands End to John O'Groats, i run marathons, swim outdoors etc etc and i feel as if i've lost my identity because i can't do these things....or at least i can't at the moment. Im prepared to cut back my activity but i want to, and i need to, keep active.
I am sure I will be the first of many to put your mind at rest.
Welcome to the exclusive defibrillator club.
My husband has a condition called long QT syndrome; this can cause your heart to beat very fast at times and even cause a cardiac arrest.
3 years ago, he had a cardiac arrest at home. I was able to do CPR while the rapid responder arrived. He was in ITU for a week and in hospital for 3 weeks. Like you he had an S-ICD defibrillator implanted.
He was 56 at the time.
The first few months were very difficult for both of us. We were on edge in case he had another event, and the defibrillator would deliver a shock. We felt we could not get back to our normal lifestyle of travelling and having our holidays away.
So your current emotions are very much normal at just 4 weeks post implant, but they will pass with time.
We are three years on now and although it took time we are now back to living our lives. Before COVID took our freedom away we were back to our adventures. We have travelled extensively since the implant, in fact last November we had an amazing tour of Japan.
The year before we drove route 66 across the States.
It will take time for you to adjust, but you will. Remember the implant is like having your very own rapid responder with you 24/7; There in case you ever need it.
You may find this site is helpful, its American but helpful if you have questions:
Medtronic - Ask the ICD
If the link dosn't work try putting this in Google.
There are tens of thousands of defibrillator fitted folk out there just enjoying the peace of mind that they have a friend with them all the time. Try to relax and enjoy every day.
Take care and stay safe and well in these difficult time we all find ourselves in.
Good morning Tiny , don’t worry you certainly are not alone with your feelings. I collapsed while driving , fortunately I was in a car park . I had been feeling fine just before it happened, I ended up in AE and didn’t come out for 15 days. After ECG’S , scans and an MRI I was found to have AV blockage and Non compaction of the heart that had happened in the womb. I was shocked as I’ve led an active life and I’m now 55 and only finding this out now . I had a dual pacemaker fitted 6 weeks ago and initially after leaving hospital I felt very vulnerable especially when the clinic checked my readings and told me the pacemaker had been working at around 36% of the time. It’s also meant that I can no longer do my job due to the electrical and magnetic fields I’m surrounded by. Fortunately I’ve been able to take an early retirement package (55) so this has also been a big shock. I’m trying to think positive and telling myself that I’m lucky that I’m still here and heart wise all should be good for the future. I would guess that like me you can still feel your device in your chest so this is a constant reminder. I guess it all takes time to get your head around it all. But your certainly not alone. All the best
Hi Tiny, please see the comment I wrote to Gordon as it may resound with you.
Hopefully in another month or so you will almost have forgotten your ICD is there. I see it as being lucky that we've got the technology to bring our hearts instantly back to a normal rhythm should it go dangerously amiss.
I was the same when I got mine fitted at the age of 57. I'm now 62 and the things has never gone off. In my case I was put on drugs to control my heart so the ICD is just their for an additional level of safety. Most of us will live out our lives without it ever going off.
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