In this area, we encourage members of our group to share their experiences of either having an ICD or caring for someone who has. During last years Heart Rhythm Congress, some ICD recipients were invited to participate in a series of podcasts telling in an informal manner, their experiences. You may like to visit the web site and watch some of these podcasts including one from Colin, one of our co-founders. If you would like to share your experiences, please let us know and we can put it on the web site for you.
1. A faulty lead
Earlier this year, there was an advisory for patients with a Medtronic ICD fitted with a certain type of lead (Sprint Fidelis). There was concern that this type of lead was showing higher than expected failures. All patients were recalled and the lead was checked. As an added safeguard, the ICD was programmed to do its normal 24 hour check and additionally, the ICD was set to give an audible alarm at a preset time of the day if a faulty lead was detected.
Hopefully the lead would not go faulty but in the case of one of our members, it did. We thought it would be helpful to members to detail what happened afterwards.
The ICD regularly checks the impedance of the leads and in the case of the Sprint Fidelis lead, it should be around 400 ohms. The ICD alarm was set to trigger if the impedance rose to the 1000 ohm threshold. In this case, it did and in the morning there was a distinct audible alarm indicating that something was not right. A quick phone call to our local Cardiac Clinical investigations Unit was made and an appointment made to visit our hospital within the hour. A subsequent download immediately showed that the lead had been deteriorating over the previous two weeks and that it was very close to delivering inappropriate therapy due to the noise being generated by the faulty lead.
The patient was sent to the Gloucester Royal Hospital Cardiac unit and the defibrillator function disabled to prevent inappropriate therapy being delivered. To play safe, the patient was given a portable ECG unit to wear at all times in the hospital and told not to leave the Cardiac Unit (where a defibrillator was at hand - just in case).
Changing a lead can go smoothly or it can be a complicated bit of surgery, so arrangements were made for the patient to go to the John Radcliffe at Oxford where the faulty lead was extracted and a new different type of lead was put in its place. One day later the patient was sent home.
In all that took 8 days and at all times the patient felt that the Cardiologists would not take any risks and she was in a safe environment until final discharge.
2. Don't Take Chances – Report Changes!
Back in October 2008 I woke up with more than usual discomfort in my ICD site, there has always been a small, sensitive area where the leads are attached for me. I was not too worried, but sent an email to Dr Petersen's secretary to enquire whether Glos. had any kind of helpline yet.
I had an appointment with my GP that morning anyway and mentioned the pain to him. He took a look at the wound and commented on the redness – that had not been noticeable when I washed earlier in the day. He gave me a prescription for antibiotics and I took that to the pharmacy.
I was about to enter Tescos when my mobile rang. It was Dr Petersen's secretary to tell me that she had shown my email to Dr Nuta and that I should pack a bag and come into the hospital straight away! Good thing it was at that moment since I cannot get signals inside Tescos at Quedgeley.
My hospital bag is always packed ready so it was just a case of sticking the book I was reading into it and getting the next bus to town and a taxi to GRH (why isn't there a better bus service?)
That was the start of a two week stay with intra-venous antibiotics – even though it seems that the infection indicators were not actually very high on admission. After that it was another couple of weeks at home on oral antibiotics (only for ten days actually, the side effects were worse than the risk of stopping early (on my GP's advice))
I was regaled with horror stories as to how hard and dangerous it can be to extract an implant, especially if it has been in for a long time. Though there does seem to be a difference in opinion on this between consultants . . .
If you notice any change at all in your experience of the implant; new or different pain, swelling, change in colour in the skin over and around it – anything – get in touch with someone in the cardiology department. Now that we have some nurse specialists and technicians devoted to minding cardiac implants we may have some sort of contact number established in GRH and/or Cheltenham General.
The other aspect of this is the reaction of GPs. Dr Nuta hinted that GPs should automatically refer any changes in ICD states to Cardiology, perhaps in the same manner that they may send one to Cardiac Investigations for an ad lib cardiogram straight away. I certainly relayed Dr Nuta's comment to my own GP, hoping that he would spread the word to his colleagues.
Maybe, as knowledge of these devices is spread, there will be a protocol set up for such things. We can hope – or perhaps lobby for such with the local Primary Care Authority.
3. The story of the infected ICD system
My problems began because I was asked to leave all my woodworking tools at my son’s house (as you do!), and I was trying to saw a piece of wood at home with an old rusty saw. My right arm got tired, so I used my left arm, to finish the job – and my ICD was located on my left side.
That night, when cleaning my teeth, I noticed that the two leads above the ICD were bulging outwards under the skin, and the surrounding region and shoulder were sore. After visiting JRH, where the blood test showed no sign of infection, I was warned nonetheless that the system might be infected.
After about 4 weeks, the skin above the leads was purple, and raised like a boil. This finally burst with a spectacular discharge of pus. I was advised by JRH to visit the local hospital, and again blood and tissue swabs were negative to microbial infection. Over the next 4 months the wound continued to discharge pus, and during this period I returned 3 times to Oxford for attempts to excise the infection. In each case it was unsuccessful, and I was told unequivocally that my system was infected, that the only proven solution was to have the system removed and replaced. In the mean time, I was instructed to be mindful that there was a real risk of endocarditis developing. I took a lot of flucloxicillin during this time.
Finally, on Boxing Day 2007 I ended up in JRH when it was decided that the system was to be explanted. As my ICD had been implanted some 5 years before, it was quite a struggle to remove the leads, as they were embedded in fibrous tissue. This was performed under a general anaesthetic, and took over 4 hours. I then had a massive haematoma develop at the site of explantation, which required a further clean-up. Blood tests finally did show infection from two common skin-borne bacteria, Staph. epidermidis and Propionibacterium acnes. After a few days, when all blood parameters had returned to normal, I had a new system implanted on my right hand side and sent home.
I was told by the cardiac and microbiology staff that my infection was almost certainly introduced during the first implantation in 2003. This is not uncommon, and usually the immune system will cope with such. If infections do persist, more often than not they become encapsulated in fibrous tissue that forms around the leads/box, and are thereby unable to spread throughout the body. These have been known to stay there in a state of dormancy for years. In my case, it was probably the exertion of sawing (with a blunt saw) that caused the fibrous capsule around the leads to rupture, such that the leads were then bulging under the skin, and the infection began to proliferate in the superficial tissues.
It is over a year since this happened. I now have the left-hand side of my chest looking like a battlefield, and a new ICD fitted to my right-hand side. I feel fine and back to my normal tiresome self. The real downside to all of this, however, is that I have rather weak muscles in my left shoulder and arm – after not really using that arm for over 5 years, plus the fact that now I cannot really use my right arm, for fear of repeating all of this.
I was duly reprimanded by those dear people at JRH for trying to use my arms too vigorously, and I have now told my son he can keep all my tools – I will use power-tools in future.
The whole experience has been salutary for me – on the one hand, since having an ICD I have always tried to put it to the back of my mind, and have always engaged in rowing, swimming and heavy work in the garden. Now I am attempting to lead a reformed life – and trying to persuade my son that he should help his poor old father more often -both difficult.
Moreover, at the time I was a little concerned about the risks from having my ICD system explanted. This went well for me (though the poor Registrar that took it out said his fingers hurt for days afterwards due to the fibrous tissue around the leads), but it is not a procedure that I would recommend to anyone. As my wife keeps telling me – I should start acting my age.
4. Experiences with Amiodarone
The drug was first prescribed a couple of years before my ICD was fitted – in an attempt to treat repeated bouts of AF and ectopic ventricular beats, at a dosage of 200mg daily. I developed the well-known photosensitization, which meant I needed to use factor 30 sunscreen when exposed to the sun – as I regularly walk, this meant my face and arms were always red after being outdoors. I also developed the crystalline deposits on my cornea – the optician told me they were like spider-webs, but caused me no problems. After a year or so I dropped the dose to 100mg per day, though these side effects did not disappear. I had to have regular blood tests to check liver-, kidney and thyroid function.
After my ICD was fitted I remained on amiodarone for a couple of years, until one day my GP rang me to say that I was greatly hyperthyrotic – almost certainly due to the effect of the iodine that is in amiodarone affecting my thyroid gland. I was experiencing some of the effects of hyperthyroidism – feelings of always being hot, always being hungry, yet losing weight, poor sleeping etc. It is well known that amiodarone can sometimes stimulate the thyroid to be over-active, and sometimes suppress its activity – in my case it was the former. The JRH consultant suggested that I came off amiodarone and I was told the propensity for arrhythmia, for which I had been taking the amiodarone in the first place, might still be suppressed by increasing my beta blocker dosage. He also advised me to have my thyroid gland ablated/inactivated. This would mean that thereon afterwards I would need to take thyroxin each day, but by doing this it would then allow the option of returning to amiodarone in the future, should my general condition/arrhythmia demand it, as it is still a uniquely functioning drug.
I was told that before my thyroid could be ablated I would need to restore its over-activity to normal, and to ensure that all of the residual amiodarone have been removed from my body – this was estimated to take 3-6 months.
In actual fact it took well over a year, during which time I was prescribed combinations of carbemazole and prednisolone to control the hyperactivity. Eventually, blood tests showed that my thyroid was back to normal, and I underwent the ablation with radioactive iodine, the radioactive iodine being taken orally. I was told that it would then take possibly up to 6 months for my thyroid to become inactive – the radioactivity from the iodine that is specifically taken up by the thyroid gland bombards the thyroid cells and gradually their capacity to manufacture thyroxin is lost. As I was ‘radioactive’ immediately after treatment, I needed to keep my distance from my wife and close friends for at least 2 weeks, and from children and pregnant women for about a month. Eventually, after about 1 year following treatment my thyroid began to show signs of inactivity, and I exhibited all the signs of being hypothyrotic (weight gain despite lack of appetite; muscle cramps, feeling cold, lethargy). Within a couple of months, however, once the correct amount of thyroxin that I needed to take orally had been established, things settled, blood levels were normal, and have been OK since then.
It is now over 4 years since I stopped amiodarone, though I still go red when exposed to sunlight – once you are photosensitized to something, it stays with you. However, the corneal deposits disappeared quite rapidly.
One curious thing happened, however. For years I have always suffered from contact dermatitis caused by perfumed skin/washing products – skin of my hands cracking if, say, I used perfumed soap, washed up without rubber gloves, or if I applied aftershave with my hands etc. When I was taking amiodarone, this problem disappeared, and my hands were fine. Once I had stopped taking amiodarone, after about another year, the contact dermatitis returned and is still with me. I have heard a similar experience from another arrhythmia sufferer, but I have found no references to this in the published literature. I know that some people say that if the Devil himself were to devise a drug, it would have been amiodarone. For my own part, I hope I can remain off it for some time yet – and, as for the problems with my thyroid – well, I suppose when you have got used to living with an ICD, having then to undergo a few more blood tests, appointments at hospitals, hunting for car-parking places, having to take few more pills are no big deal.
I follow with interest the progress of the new drug dronedarone – an analogue of amiodarone, but without iodine in its structure. It is purported to not possess the antithyroid effects of amiodarone. So far there seem to be no cardiologists seen to dancing in the streets and prescribing it yet.
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