Hi I am looking for supportive advice as I know this is possibly a controversial subject! I have had my icd for around 2.5 years now (I have inherited hypertrophic cardiomyopathy!) and really don’t get on with the ICD. I feel it is unnecessary as it has never administered any therapeutic shocks or picked anything up particularly shocking (pardon the pun!) but it has stopped me feeling happy to exercise (after being pretty fit most of my life - I’m now 46!) and so the knock on effect has been weight gain, lack of fitness, pulling pains in my chest if I use my chest muscles and generally feeling a bit upset that I was talked in to having one fitted! I know that most people feel lucky to have these machines and therefore safer. I can imagine that people will chime in with the usual ‘they wouldn’t have fitted it if it wasn’t necessary etc etc!) but I have heard that they are now fitted to some as precautionary measures and my first doubts emerged when the nurse in the recovery ward afterwards asked me why it had been fitted? (you can imagine I felt fairly confused!) I also had bad chest pain a few days after the op to insert it and ended up in casualty, where again I was met with another cardiologist asking me the same thing? I have made various steps to speak to my consultant over the years I have had this machine, but I am persuaded to stay positive about it and to try to exercise more and not worry. I expressed concern before it was fitted and told it would be removed if I couldn’t tolerate the device but the consultant that fitted it dropped me from his arrhythmia clinic before I could speak to him and the excuse was that I didn’t suffer from arrhythmia any more?! Highly unlikely as this has always been a problem for me. This has all just made me feel a bit funny about this whole situation, after lockdown a lot of time has passed and they say they can’t remove the wires any more as too much time has passed but are happy to remove the icd if I want. I’m now waiting for an exercise stress test and to see the consultant to make a final decision. I had an echo a few weeks ago. I’m hoping any new info from the tests will help me decide but I just wondered if anybody else has had an ICD removed for personal reasons?
Hi Kittylilah. What a predicament to be in, I feel for you as I too have genetic HCM, it's quite a shock after 57 years.
My diagnosis came after a sudden minor stroke and silent HA.
Now and 3 stents on, I am managed with copious amounts of medication, although the idea of an ICD was bandied around as a "possibility" . . . . I resisted, based on the fact that my statistical risk of SCD over the next 5 years was low at 21%.
Do you know your statistical risk result?
As you may want to factor this information in, when considering your overall "risk assessment"
I see you are waiting for tests/results and will be speaking with your Cardiologist. Hopefully once all the results are in, and positive in your favour, you'll be in a better position to consider all the factors and come to a more informed decision.
I can't really speculate about these devices being used as a "precautionary measure", but it does make you think, 1-2 ICD's over an average lifespan Vs. years on expensive medications and possibly more hospital interventions than routine ICD maintenance procedures. Hmm.
Either way, taking the above into account, you must do what you feel is right for you. The angst you are going through must be sending your stress levels through the roof, not good.
Please let me know how you get on, us Hyper-cardies must support each other. Take care 🌻🌻🌻
I’m so sorry to hear about your diagnosis, it must have been very scary to find out like you did, I can imagine a really shock! To have so much medication and stents fitted also difficult….. I hope you are tolerating your meds well and starting to feel better?
I found out about my HCM whilst giving birth to my second daughter at 38, I was hoping to walk out of hospital with a healthy baby, not be put in an intensive care bed for a few days! (I also felt fine after the initial breathlessness so nothing compared to what you have been through!
The risk assessment percentage makes complete sense….. it also makes me feel a bit naive as I haven’t asked for this percentage before - I did ask a lot more questions and was given a computer says yes answer! The nurse I talked to says my risk is a 10 out of 10 but I remember speaking with the consultant and he said nothing like this whilst trying to persuade me to have the ICD? 🤯 So I get a distinct vibe that I’m trying to be dissuaded with scare tactics? 🤷🏻♀️ Who knows?
What pushed my risk up was that I had had a couple of near fainting episodes and deadly heartbeats picked up on (although let’s face it not that deadly as I’m still here, sorry to sound so forthright!) 😬 this took my computed risk higher but the fainting episodes may not have been connected to my heart as I found out that I have adrenal problems (stress!) shortly after having this icd fitted and the feeling faint could easily be connected to this rather than my HCM? I felt very much like it was my only option at the time given the age of my youngest daughter (now 8!) and the consultants must know best right?!
I think I need to gain as much info as possible and buff up on all the statistics and lingo. You have inspired me to make decisions about my health for myself (obviously educated ones!) rather than bow down totally to consultants (or computers!)
I hope that your health continues to get better and better 😊
I’m really sorry to hear about your Dad that must have been a horrible shock. 😞
It is good though to hear that you are fit and well and feel happy to have your icd 😊 My Dad also has hcm and is sadly on the decline, he also had a pacemaker/ICD fitted at the same time as me but his is pacing his heart (although it has never administered any shocks, therapeutic or life saving!) Your situation sounds very similar to mine (with the rogue heart beats picked up in 2013!) so I very much understand, I just don’t like the restraints this machine brings and I have to weigh up longevity (of life!) versus quality to some degree. I will have my latest stress echo on the 31st August and then see the consultant early Sept to make a (hopefully educated decision!) surrounding this icd.
It’s great that you feel so positive about your machine.
So sorry to hear about your husbands nephew, really awful, I hope he recovers well? Your Dad was very young at 52.
It does sound like you have a lot of heart trouble in your family, on the plus side it has all been picked up and you are all being monitored and looked after. We are lucky the Brompton are brilliant, it’s great to have our care with them!
In my family it is luckily just me and my Dad with HCM my sister is fine and my children have had genetic testing and are free of the gene that causes HCM (I think that was the biggest relief!) I can’t imagine how hard it must be to watch your children have to modify their young lives to make sure they stay fit and healthy and the constant worry that something might happen to them (on top of the usual!) must be awful!
I have 4 sisters and 2 brothers all who have hcm but all at different levels
My grandaughter and grandson have the gene
Lots of my nieces have it
My cousins have it there is lots of us
I’m 65 and have never been troubled
My son is 44 and the gene has just kicked in
My daughter is 42 and she has a bit of thickness
I have been seeing a doctor in Lincoln for years and just realised he knows nothing about or not much about hcm
I have only been back in the uk the last 7 years as I spent 20 years living in Saudi Arabia with my husband
But something changed my extra heart beats arrived
My cardiologist seems to think it was not a problem but I didn’t agree so I got myself refered to the Brompton they have been amazing I just never new it was there and they are going to look after my family to
My understanding was they don't remove the ICD they turn it off?
Hi lezzers,
Thanks for your reply! 😊
My consultant is happy to remove the machine in this instance, I would have preferred the leads removed too but it has taken so long to get to this point that they say it is quite dangerous to remove them now (not impossible though…. I know they have new equipment and techniques to do this more safely now, but it is still tricky and potential dangerous!) let’s see what the risk assessment is and see what they feel given the time the ICD has been in place.
Emma
Hi TRST,
Thankyou so much for your reply! It’s so refreshing to hear your view point 😊
I am pretty sure that the hospital will have all my old echo results. I’ve had fairly continuous care at the Royal Brompton with the two same consultants for the last 7 years. You sound very clued up on your condition 😊 if you can think of any must ask questions let me know!
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