Five years ago today I got my ICD and I became a cyborg and so I thought I’d record my experience of being one of the new generation of super-humans.
Having been a technology professional for the previous couple of decades I was always interested in new gadgets and bits of tech. However, I have to admit that when the implantation consent form was put in front of me I wasn’t aware of what exactly an ICD was, what it all meant and what I was signing up for.
I had been given an idiopathic diagnosis i.e. no reason for my cardiac arrest could be found, and it was strongly suggested that there was a chance of it happening again and so it would be a good insurance policy to have an on-board defibrillator. There were associated risks with having an implant including the possibility that during the procedure I might die (again). So it was a choice of don’t have it and have a high risk of dying or have it and have a lower risk of dying. Either way, not a great choice to have to make when your head feels like it is full of cotton wool balls.
As far as I was concerned the actual implantation wasn’t too much of an issue, probably because I was out cold for most of it. Usually the procedure is done under a local anaesthetic and I think mine started out like that, but when I mentioned that I felt the first incision, a quick adjustment of the sedative level must of been made as the next thing I knew I was back on the ward with my wife.
I spent the last night of my 2 week surreal holiday on the ward. The next day was Good Friday and when I was discharged I felt anything but good. Not because of the implant, which seemed fairly minor in comparison to how the rest of me felt.
The first couple of months passed slowly, fatigue and a constant headache taking their toll. The inconvenience of not being able to use my left (ICD side) arm much being a pain. A couple of things stick in my head about this time, firstly the inability to get comfortable when trying to go to sleep and secondly not being able to shower until the wound had healed (you do not want to get an infection in your ICD site!). The alternative of showering meant that I had more baths than usual. This I found a little disconcerting as for quite some time I had a worry that my ICD would shock me and cause me to go unconscious and subsequently drown in the bath. I therefore only filled the bath with just enough water to wash a toddler and would wrap the chain of the plug around my big toe so that if I felt the shock coming I could try and pull the plug out. Looking back it seems a bit ridiculous but being in drown-able levels of water it is a real life danger to anyone who might have a similar vulnerability.
It was just about 3 months after my SCA that I had an “interesting” few days. It was a Saturday at the beginning of July and the garden hedges needed some cutting back. As i generally lacked the energy to do things like this my father-in-law came round to help out. He did most of the trimming that needed to be done but had to go before the last 2 small bushes could be tackled. I thought i could do them and so using my hedge trimmer I quickly got them into a reasonable shape. All pleased with myself, I had my first alcoholic drink since that dreaded day – a weak shandy.
I awoke the next day as normal, but noticed that my left arm didn’t feel quite right. Tracy got out of bed and flicked the light on to illuminate my arm better. There was a bit of a shock as my arm was a kind of a purple colour and rather stiffer and colder than it should have been. We both realised something was seriously not right and so we dressed quickly and dashed to A&E.
At A&E they took my recent history and we were expedited through to an examination room. I felt ok, but they wanted to do a number of tests including running an ECG. By now I’d had numerous ECG’s and was pretty familiar with the routine. Leads in, stickers on, lay back and relax for a minute. I did as I was told and closed my eyes and then WHAM! Something took hold of me like nothing else I’d experienced before. My senses set to overload, my adrenalin levels to max and a cacophony of panic enveloped me. I don’t know how long this lasted, it could of been minutes or seconds but it felt like a lifetime. Soothing voices calmed me out of my first and so far only panic attack. When I could see clearly again the small room was packed with doctors and nurses probably wondering why someone should freak out about having an ECG, probably the least painful of cardiac tests ever!
I spent the next few nights in hospital as they tried to establish what had caused the problem with my arm. I pointed out that I’d had a recent ICD implant on the same side, but this was dismissed as the cause. I then again had quite a few scans and tests but with no conclusive outcome. I was pumped with medications to help with the swelling and was finally discharged non the wiser. I left the hospital with a promise of appointments with various ‘ology doctors and a bug which sapped me even more leaving me totally exhausted.
The rest of the summer passed and autumn came without any more incidents. The main swelling seemed to dissipate from my arm and it only returned when I tried to use my arm in excess. Doctors appointments came and went and with one even exclaiming I was probably the healthiest person he’d seen that week! Whether that was a compliment or comment on the state on the rest of his patients I’m not sure.
A week before Christmas I was in my gym with my wife, Tracy, who’s a qualified personal trainer. She was helping try and put some strength back in my muscles when she said to me “is your arm ok, it looks a funny colour.” Unfortunately, she was right and a quick dash to A&E ensued.
We decided to try another local hospital as my suspicion of it being caused by my ICD was previously dismissed. After again being rushed through A&E I got to see a specialist and after some very basic checks he said it’s almost certainly to do with my ICD. I don’t recall exactly what else occurred there but the outcome was that I decided to go a private route and have some more tests done. This I did and after quite a while a very diligent physician found that the ICD lead had occluded the vein out of my arm. Blood was able to flow in, but was greatly restricted hence the reason why my arm was swelling up.
After meetings with several consultants it was concluded that the best way forward would be to leave it as it was and hope that my body would adapt. I must admit I was pretty sceptical at the time, but now 4 years later my body has done just that. The human body is an amazing thing and the consultants know their stuff.
As time progressed life with my titanium buddy got easier to live with and I began to notice it less and less. I had picked up a habit of feeling and touching it but that had dissipated. I’ve since found out that some ICD/Pacemaker owners can cause “twiddlers syndrome” by messing with the device too much which means the leads can malfunction and may need replacing.
Apart from the regular ICD checks either in the pacing clinic or at home via the home monitor things seemed to be going fine. It was a shock then that at just over 2 years since the initial implant that I heard from my buddy. We were on the way home from a holiday in France and we had stopped in a town to get a bite to eat. We had just about finished our meal when I went to the bathroom. The toilets were in a compact room under some stairs and had various gadgets in them to keep clean and fresh. Whilst I was there I noticed a beeping noise, I initially dismissed it as being one of the gadgets on the wall. Then the sound echoed around the room again and I couldn’t locate where it came from. I went back to our table and told my wife that I could hear a strange beeping noise in the toilets but couldn’t understand where it was coming from.
Unsettled, we left the restaurant and went to a quieter spot. We had been in their a few minutes and then I heard the beeping again, it was me! I don’t think I even realised that my device could make a sound but why was it making a sound now? I felt fine and nothing untoward had happened that day.
I was in the middle of France so there wasn’t much that I could do apart from head home and get it check out ASAP. The first thing I did when I got home was to go up to my home monitor and press the upload button. This was the first time I’d done a manual upload and wasn’t exactly sure what to expect but all seemed well with the box and the green light continued to shine.
The next day was a Monday and so I called up the pacing clinic. They confirmed that they had got my upload and needed me to come in. Slightly worried, I went straight in and got to speak to a consultant. He confirmed that my device had picked something up and was beeping because it hadn’t been able to relay it back to base (as per standard instructions I hadn’t taken the home monitor away with me). It transpired that almost 2 weeks previously when I’d had “a bit of a turn”, I had actually gone into VF for 2 short spells, each time not long enough for the ICD to shock me, but long enough for me to almost collapse. It was scary thinking back to that episode as it had occurred in the kitchen of where I was staying and I had jokingly done a post saying that I was dicing with death every day making a cup of tea as they had an induction hob (which is not recommended for ICD owners as it may interfere with it functioning correctly!).
My ICD had not only recorded the VF episodes but also some suspect ectopic beats, and with both of these in mind my doctor thought it be very wise to go on a beta-blocker. Up til then I hadn’t been on any medications and I knew that beta-blockers would add an extra layer of tiredness to my current fatigue. It was not something I relished but the consultant (and later a colleague of his) confirmed that it was what i needed to do. I started on them and within a very short space of time I recorded a drop in 10 bpm for my average resting heart rate and a noticeable slow down in me.
My final little escapade involving my ICD has been purely of my own making. A couples of year ago I was cycling through my local woods and some how I managed to clip a tree which sent me careering into another one head on. Unfortunately i was travelling at 20mph at the time and I impacted the tree on my head and shoulder. Fortunately I was wearing a helmet which protected my head but my shoulder didn’t fair so well. I lay in a ditch next to the tree waiting for my ICD to fire, but fortunately it didn’t.
Another trip to A&E, this time in an ambulance and at least I was awake this time! X-rays showed no broken bones, but it transpired I had damaged the ligaments which were notoriously hard to fix. It was my right shoulder that took the impact so unfortunately I didn’t get to have an X-ray of my ICD, which would have been a nice souvenir! Anyway, the less invasive solution was to put my arm in a sling for a few weeks and then do lots of physio.
As the weeks passed I started to notice my ICD moving a little. A few months passed and one day I was convinced that something was up with my device as I was getting pains around it. Feeling very nervous, we went to A&E. I got to see a Spanish doctor who gave me a thorough checking over and found nothing wrong. I was confused, but she said it could be muscular. I dismissed this as my shoulder injury was the opposite side. However, this occurred again some time later and it was only once I’d got back into going to the gym did it disappear. A physio later explained that it was likely due to atrophy of the muscles due to inactivity and that the device had a bit more room to move around in. Once I’d bulked the muscles back up to the previous level the pains went away. So, if you ever get pains around your ICD and you’ve had reason for your muscles or body structure to change in any way don’t panic immediately.
At my recent pacing check everything was looking good and I had plenty of battery life left, which is encouraging not only because it means the replacement will hopefully still some time off but also because it’s not actually doing very much. So, although there’s been a few ups and downs along the way, my tenure with an ICD has certainly not been too bad and it is always reassuring to have a backup with me all the time.