5 years a Cyborg

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.

A potentially hazardous kettle on hob

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!).

The affect of taking 5mg bisoprolol for 10 days. Reduced my resting bpm by roughly 1 bpm a day

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.

The invention of the ICD

The following post is largely taken from “The Development of Implantable Medical Devices at The Applied Physics Laboratory” By Robert E. Fischell.  It documents the history of a number important and common devices seen today including the ICD, which I’m sure many SCA survivors are familiar with but may not know the history of it’s development.

Dr. Mirowski’ s Invention

Shortly after the rechargeable pacemaker development work began at John Hopkins University Applied Physics Lab, Dr. Michel Mirowski, a cardiologist at the Johns Hopkins School of Medicine and the Sinai Hospital of Baltimore, conceived the Automatic Implantable Cardiac Defibrillator (AICD).

The AICD was to be implanted just under the skin in the upper abdominal area of patients at risk for ventricular fibrillation, which is a rapid, uncoordinated contraction of heart fibres brought on by a severe disturbance of cardiac electrical actIvIty.

The Human Tissue Stimulator implanted under the skin in the chest with electrodes stimulating the brachial plexus nerves

Dr. Donlin M. Long (right) adjusting the electrical stimulation parameters for the first Human Tissue Stimulator patient

The shape of the AICD is similar to that of commonly used heart pacemakers, but its function is markedly different. About the size of a cigarette package, the implanted defibrillator is programmed to monitor the heart continuously, recognise life-threatening arrhythmias, and automatically deliver electric shocks through electrodes directly in contact with the heart to restore the normal rhythm.

The highly miniaturised version of the bulky conventional defibrillator does essentially what doctors do in emergency rooms when they apply a powerful external shock to a patient suffering from this form of episode. Because it is implanted, the defibrillator uses only a fraction of the voltage needed externally to accomplish the same thing.

Most importantly, the implanted defibrillator automatically makes the diagnosis and implements the appropriate therapeutic decision. Thus, its unique advantage is its permanent availability to the patient without requiring the presence of special personnel or bulky equipment.

The above shows the AICD device with the long, slender lead that goes into the patient’s superior vena cava and a cup electrode

The above shows the cup electrode just under the heart, the long, slender lead in the superior vena cava, and the AICD pulse generator under the skin in the patient’s chest

The role of APL in the AICD Project

Having heard of APL’S high-technology capabilities, Dr. Mirowski sought out the Laboratory ‘s assistance in 1974. Among the first improvements in the AICD instigated by APL was the introduction of the same satellite reliability and quality control techniques that had been applied to component selection, fabrication, and test procedures for APL spacecraft. These were the same techniques that had made a success of the rechargeable pacemaker. Furthermore, a system was created by the APL engineers for alerting the patient with a subcutaneous buzzer when an episode of ventricular fibrillation had occurred. Further, APL developed a system for holding in digital form the patients electrocardiogram (ECG) for 10 s before and 15 s after a fibrillation event. Both features were designed to provide the physician with an improved understanding of how to apply the AICD therapeutically. To verify how well such an alarm and recording system would work without interfering with progress toward completing an implantable version of the AICD, funding was obtained from NASA to develop an external system capable of recording the ECG both before and after the fibrillation event.

The recorder as it was worn by an AICD patient

The entire recording system, including the recorder, straps for holding the chest electrodes and the recorder, and the console for playing back the recorded data

The First Implant

The first implant was performed by Johns Hopkins surgeon Dr. Levi Watkins, Jr., on 4 February 1980. The first patient was a 47-year-old woman from San Mateo, California, who had experienced two episodes of ventricular fibrillation but had miraculously survived.  The glass-enclosed gallery above the operating room included many engineers and scientists who had been working on the AICD development for many years. The attendees were surprised to see that the surgery was much more extensive than that for a pacemaker implant.

For these first AICD patients, the entire rib cage was opened until the heart lay clearly visible for the surgeon to attach the cup electrode at the bottom (apex) of the heart. The vena cava electrical lead was then carefully inserted into the large vein above the patient’s heart. Everything was now ready for placing the AICD device subcutaneously just under the abdominal skin. The surgeon turned away from the operating table and asked the nurse to hand him the AICD, which was contained in a sterilised pouch.

Ten people in the operating room and twice that number in the gallery gasped when the nurse opened the pouch and then dropped the AICD on the floor! One thing learned from spacecraft operations was to have spare parts available. In this instance, a second AICD unit had already been placed on the sterile table, and it was taken out of its pouch with great care. Dr. Watkins proceeded calmly to implant it in the patient, connect the leads, and close the incision.

The First Test

Because the AICD had never been tested in a human subject, it was decided to evaluate the device’s performance in the first patient under very controlled conditions. These “controlled” conditions really became an extraordinary experiment in the catheterisation laboratory. The only way to tell if the AICD functioned properly was to stop the patient’s heart from beating by sending a strong electric current through the heart muscle so that the heart would go into ventricular fibrillation.

The AICD would then (hopefully) automatically restart the heart. As a backup for the AICD, an external defibrillator was close at hand and ready to go to work. The first test of APL’s ECG recording system was to record the entire event. With the catheterisation laboratory filled with a dozen people, Dr. Philip Reid directed the critical first test on 22 February 1980. It took quite a while to drive her heart into the typically fatal rhythm of ventricular fibrillation, during which time the tension rose in the crowded room.

Finally, the CRT display showed the classical EGG signal that indicated fibrillation. After ten years of effort, the real moment of truth for the AICD system was at hand. In about 15 seconds, the AICD was to sense the lethal rhythm and fire a 600-Volt pulse into the heart.

But that did not happen! At 30 seconds, with no response from the AICD, Dr. Reid started charging the external defibrillator. He placed the paddles on the woman’s chest and yelled “stand back” when, at last, the AICD “automatically” fired. After an 8-second post-shock recorder recovery time, the patient once again displayed a normal ECG signal.

ECG record made with the APL recording equipment

Only a short portion of the 40 seconds of time that the patient was in ventricular fibrillation is shown. It was probably the longest 40 seconds that the attendees had ever endured, but the AICD fired and promptly restored the patient’s heartbeat to a normal rhythm.


4 ICD’s and a dodgy valve

Guest Post by Mark W

I woke up in a hospital bed in the CCU ward of the Royal Free Hospital on 22nd December, 1994. My wife, Adele, was sitting beside my bed and I asked her what was happening and where was I?

I had arrived at my office the previous morning to collect some files, and had just stepped outside the door onto the pavement when I collapsed, unconscious, on the pavement. My employer saw me lying there and told one of the staff to dial 999. I wasn’t moving or breathing and was just lying there on my back, going grey. While waiting for the ambulance to arrive, he knew he couldn’t just watch me die and, having seen CPR being administered once before, he decided to have a go at it with me.

A paramedic on a motorcycle arrived in about 8 minutes and, luckily for me, he had an AED with him. He began prepping me for a defibrillation procedure when a 2nd LAS unit arrived with two more paramedics. It took them about 30 minutes to get something resembling a stable output from my heart. On the ride to the hospital, I arrested 3 more times, receiving defibrillation each time.

Once in the resuscitation unit, I was stabilised and my wife and daughter arrived to see me lying there, covered in foil insulation and with all conceivable wiring and machines hooked up to me.

My daughter told me later that the 1st paramedic was waiting outside Resus in a very nervous state as he had only qualified 6 months earlier and I was his first SCA to survive. I was sedated and kept unconscious for a further 24 hours.

Once I awoke the next day, the cardiology team confirmed I had arrested but couldn’t say exactly why. They did tell us that I could not be discharged until an ICD was implanted. My wife arranged a transfer to St. Bartholomews in London where I was cared for by a specialist arrhythmia team. I had recovered all my senses except for short term memory and was feeling quite strong and well for another month and my ICD was implanted in late January, 1995.

I left the hospital within a week and continued my recovery at home. Not a lot of information about life with a defibrillator was available in those days. We just got on with things. I lost my driving licence and was unable to find work until the following April.

In the meantime, I almost arrested once in my sleep and then, in March, I arrested at home in front of my 8 year old son. The ICD paced me and I regained consciousness but was still in fibrillation. Then, the ICD went off with a full defib shock and restored my heartbeat.

The ICD went off twice more that year but I wasn’t in Ventricular Fibrillation. The doctors fine tuned the ICD and prescribed a beta blocker for me and everything went back to as near normal as possible under the circumstances. I endured another cardiac arrest whilst asleep at home in January 1999 and was saved by my ICD giving off another life saving shock.

No further arrests have happened since and I am now on my 4th ICD. The eventual diagnosis of my arrests suggested that my prolapse mitral valve, which I was born with was at fault and I received an artificial mitral valve via open heart surgery in December, 2003. I continue to live a fairly normal life, taking only two drugs for life; Sotalol Hcl (beta blocker) and Warfarin because of having a carbon fibre mitral valve in my heart.

I have an excellent prognosis so far. My initial arrest occurred at age 46 and I will be 70 next February. I am currently an outpatient at Harefield and have a
Boston Scientific ICD (my 4th) and a bedside monitor now. It does an automatic upload and transmission to Harefield every three months and I have an annual appointment there for the pacing clinic, my cardiologist and an echocardiogram, as well. I have no serious issues regarding this exciting medical story. I got my driving license back just over 2 years after the initial arrest and have been flying all over the USA and Europe ever since. I’ve lived to see two of my children get married and there are now 3 grandchildren that I might never have seen.

A few technical points to add:

My 1st ICD was implanted in January, 1995  It was a Ventritex (acquired by St Jude in 1996) unit and weighed over one pound. It was inserted into my abdomen below the left side of my ribcage. The sensing/pacing leads ran up under the skin over my ribcage, up to my collarbone and then entered an artery to go down into my heart. It took me about 6 weeks to begin sleeping properly because of the bulge over my intestines. I did get used to it, and, although I couldn’t ignore it altogether, it did get more comfortable. That unit went off 4 times, twice saving me from SCAs and twice inappropriately, knocking me off my feet whilst fully conscious. It was replaced due to battery getting weak in March, 1999.

The second one was a Medtronic unit about the same size/weight as the first and was also inserted into my abdomen in the original pocket. That one never had to go off and its battery began to go downhill in 2008, just before my daughter’s wedding in August. This surgery was done at Harefield and while discussing the procedure with my cardiologist, he realised he had forgotten where mine was. When I reminded him it was my abdomen, he laughed and said things had moved on since 1999.

The new one would be implanted in a pocket behind my left pectoral muscle; it was that much smaller! That was done in late July, 2008. and that was also a Medtronic unit.

Finally. ICD #4 was done in September, 2015 and one of my leads was failing, so a new lead went in, as well. This unit is a Boston Scientific, accompanied by a new bedside monitor. It’s about the size of that cigarette lighter (a Zippo I’ve had since my Air Force days).

ICD, Zippo Lighter, one pound coin

So, that’s 23 years’ worth of ICD technological progress. This new one is invisible behind the chest muscle. I’m the only one who knows exactly where it is. The only negative side of all this is that they left #2 in my abdomen because they weren’t going to subject me to 2 procedures back in 2008. So, they just switched it off and it sits happily and quietly in my guts. Again, I’m only aware of it because I know exactly where it is! Apart from the relatively unnoticeable scars from all the incisions, I don’t look like I’ve had all this surgery done on me.

To finish, finally, my dodgy mitral valve began giving up on me in 2003, and I underwent open heart surgery in December of that year and received a carbon fibre mitral valve to replace my failing one. That’s now only evident by the fading vertical scar over my sternum (breastbone).

Let’s be real careful out there!