I'm 49 and have non-ischemic dilated cardiomyopathy with few symptoms except occasional palpitations. Tests show LV function has declined progressively over the last 4 years and I am now in the severe category but I feel fine, am otherwise healthy and can exercise normally. I'm taking Bisoprolol and Ramipril. My cardiologist is suggesting I have a combined pacemaker and ICD implanted. He is concerned about risk of sudden arrest which apparently is higher in patients like me with epicardial fibrosis. So probably I will go ahead.
But obviously there are downsides, not least the likelihood of lead failure some time in my sixties (assuming I make it that far!) needing a major open heart op to fix.
I will obviously be asking my cardiologist this now I've had time to think about it more, but does anyone know of any sensible alternatives? E.g. what about keeping an external defibrillator device at home, or carrying a portable one when away? Or are there drug therapies worth looking at?
I'm also interested in sharing experiences with anyone who faced a similar decision.
Thanks!
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Hello and welcome to the forum. My husband has DCM too, diagnosed at the age of 54. His EF was below 35% so he was offered an ICD but declined as he hadn’t had a cardiac MRI he was supposed to. When he had the MRI the cardiologist phoned and said he needed to have his Aortic Valve replaced because it was stenosis (narrowed) and regurgitating (allowing blood to drop back through from the atria to the ventricle). The valve was bicuspid anyway (had 2 leaves instead of the usual 3). So he had the surgery and EF stayed below 35% so he was offered anICD again - but declined. He wanted to give things more time to settle down. A year later and his EF was up to 45%, so he no longer met the criteria for an ICD.
My point is to be sure that you’ve had all the tests you need before having the ICD because it limits your ability to have a cMRI going forward.
Hope this helps. All the best to you and your loved ones.
That's really interesting, thanks posting. In my case I have had an MRI (in 2016) which is what showed up the fibrosis. None the less I asked my cardiologist whether a device would mean I can't have MRIs in future and he said the device would be MRI safe. Maybe some are MRI compatible and some not? Or is was there another reason it would limit access to MRI?
You can now have MRI's on older devices . Certain precautions have to be made first and not every hospital can do them so you may have to travel a bit. I know someone who had the MRI at Papworth but they don't do them there for my husband's ICD so his cardiologist was going to refer him to Bart's.
Hi your post was very interesting so happy to hear your husband improved i have similar condition with ef but I had a ha which they say severe damaged my heart im wondering god willing if it possible to improve my ef without a icd thank you
Hello, my husband had an ICD + pacemaker combined fitted in July last year - for slightly different medical issues to yours, he had successful mitral valve repair surgery but suffered complications in other parts of his heart during surgery. This resulted in him having 2 cardiac arrests a week apart, fortunately whilst in hospital. He was fitted with an ICD , chances of surviving a cardiac arrest at home or outside are very slim, even if there is a portable defibrillator, view having an ICD as a persons personal insurance policy to live if you go into cardiac arrest. 7 mths on my husband is pleased he has it, as a family we find it tremendously reassuring, with regards MRI scans they can accommodate and ICD , a cardiologist wouldn’t suggest it without good reason as it’s not a cheap process and requires remote following by ICD team. Medical advances happen and who knows how leads and devices will be replaced in 20 yrs, think about now and understanding the risks if you don’t have it fitted! All the best
Thank you, iceterraintrek. That's really helpful. I definitely will be asking about what data there is on risk of arrest for someone with my condition. I have no idea whether its 2%, 0.1% or 0.001% or whatever per year. Obviously anything substantial and I'm going ahead regardless.
Yes, definitely ask as many questions as possible, the surgery for it to be fitted is only 45 mins under local anaesthetic. Be guided by your Cardiologist and don’t get swamped by Googling it. My husband has his remotely monitored by our nearest hospital 130 miles away and attends. Clinic every 9 mths. Support from ICD at the beginning was great, we have access to ICD support team by phone and email as well when if we need it. We weren’t expecting to go down this road and my husband hasn’t needed his ICD but good to know if his heart goes into cardiac arrest neither I or my 11 yr old will have to worry. Good luck in your journey 😊
Thanks HappyJo. Really interesting detail. The extra complexity of needing a team on hand to adjust settings and monitor wouldn't have occured to me so very helpful to know.
I've never been told what my ejection fraction is but I will ask at the next meeting. I've just been told that the LV function is impaired and has progressed from mild/moderate to moderate and then to severe over the last 4 to 5 years. Although I gather these categories are a bit arbitrary and are set to change soon.
I remain at the starting doses of Bisoprolol (1.25mg 1 per day) and Ramipril (2.5mg 1 per day) since 2016. It wasn't increased because they were causing some side effects such as feeling light headed when I get up, blood pooling in the head when tying laces, and possibly vivid, sometimes stressful dreams to name a few. I've never been offered any other meds.
I'm sensitive to the fact that for some people (including possibly me) an ICD pacemaker is the right choice. But I am keen to hear arguments on both sides so I can be sure to discuss all the possible issues with my cardiologist and make the most informed decision I can.
Do you feel able to elaborate on your and your professor's reservations about ICD?
I'm afraid I don't know more about the category changes - its was just something my cardiologist mentioned in passing when I expressed surprise that I was now severe but didn't really feel any different.
My husband has had HF since at least 2012. It was recommended he have an ICD fitted due to a previous out of hospital cardiac arrest which he was lucky to survive. His ICD was fitted in 2012 and it's has never shocked him nor has he had any leads or infections issues but it has corrected his heart quite a number of times, it's now been adjusted to pace him as well.
I wouldn't get too hung up on numbers, cardiologists are more interested in how you're feeling, what symptoms you have etc. An EF is simply a measurement of the rate of flow blood is ejected from your heart. Some people have very low EF's and have few if any symptoms, others have can have quite high EF's but be are very symptomatic in which case meds are adjusted to help alleviate the symptoms.
Please look up ICDsupport-uk, the name says it all for accurate and up date info re the various heart device, they will be able to go through all the plusses and minuses without any bias.
Also look up the charity Pumping Marvellous heart failure foundation, i can't recommend them highly enough for information, research, latest advice etc.
Both those sites have closed Facebook groups I'd also highly recommend joining if you do FB, super friendly and so informative.
Do bear in mind though, everyone is different. What may be right for one person may not be right for another, getting all the info to make a decision really is the right thing to do.
Good luck with whatever you decide to do, if there's anything else I could help you with please let me know.
Ps: my husband's EF was 35 on diagnosis, it then went down to 30 and is now 50!!
"Heart Failure Foundation – Heart Failure information for patients" pumpingmarvellous.org
That was a very helpful post. Thank you so much. I will certainly look into ICDsupport-uk and pumpingmarvellous. Just deleted my FB account out of concerns about the company's effect on society and democracy, but can always create a new one just for this.
I think FB can have its uses such as the support groups I've mentioned but apart from that it can be very toxic. I try not to take it too seriously and just ignore anything that irrelevant to me. I can certainly recommend both those groups if you do decide to open another account.
Lot's of advice, support, friendship and absolutely no judgement. Both groups are run very professionally and respect for each other is paramount. Additionally everyone in each group have personal experience so have a wealth of knowledge and admin are always there to monitor it.
I'm also a member of another group for my husband, if you're interested I'll send you the link, it's helped me massively
Im 42 years old and played footy 3 times a week for over 20 years so i beleived i was fit and healthy then dec 2019 had a heart attack , they said it was pericarditis (swelling of the sack aroubd the heart) , they did all tests but not mri and said evrything was normal and sent me home with 5 day course of colchicine ,went back to footy in jan then i had a cardiac arrest which caused damage to my heart and stent was fitted as a precaution , was also advised by dr possible icd required , ive avoided getting it for over a year now but keep getting advised i need 1 so im going to get 1 at end of march but i keep getting doubts , i didnt realise about leads going faulty .
What I've been told is lead failure can happen after say 15 years of wear and tear but they can of course be replaced, its just a more involved operation than the original impantation or battery change. Whilst I empathise with your reluctance and worries about it I think if I had had a HA and then a cardiac arrest I would be in no doubt whatsoever that I would go ahead with an ICD. In fact I think I would be demanding one loudly The balance of benefits vs costs would be much clearer in favour of getting one. There are lots of people on here whose lives have been saved by them and who find living with them quite manageable. It sounds to me like you are right to heed your doctor's advice given your history. For me, whilst I have yet to make a firm decision (I have further tests pending), based on what I know so far I will most probably go ahead with having one. I'm just in the process of doing the "due diligence" to be sure its right for me.
I wish you the very best of luck with the ICD at the end of March. If you feel like it do let us/me know how it goes for you. Take care.
I’m rather late responding to this but my recent experience gives me a different perspective. I also have dilated cardiomyopathy and heart failure thought to be caused by a virus 4 years ago. I had a CRT D fitted 3 years ago as a precautionary measure, my EF was low 20s. After being on Entresto and with the device it rose to low 40s. I never dreamt the defib part of my device would come into play. However, last week it saved my life. I was out walking on the beach, felt dizzy and next thing was coming round on the floor ( with a broken ankle in the process!). I had no idea the defib had activated till I got a call from remote monitoring the next morning asking me to go to cardiology! There had been a “lifesaving intervention”. Don’t hesitate,
A very late reply to your helpful post! Anyway I appreciate the encouragement as I now have a proposed date for the implant and its coming up. Still having doubts, mostly I fear the device being uncomfortable when sleeping or restricting my movements when exercising as I'm quite slim and I see other patients here having such problems. Hard to come to terms with the necessity when I feel so well. But you story is definitely one to keep in mind!
Hi TRST, Thank you. At my last meeting my Cardiologist said my EF is 30% and that I'm just into the "Severe" category after a steady decline in function over the past 2 years. He also said I can feel well on this figure because if the heart is bigger than normal 30% of a larger volume can still be sufficient for the body's needs. In addition to the defibrillator protection the device will also give me resynchronisation therapy to ensure left and right sides beat together which may improve function and be protective of further decline and in itself reduce the risk of dangerous rhythms. They are also hoping that with the device I'll be able to tolerate a higher does of the meds than I can at present. So the benefits appear significant and I think outweigh the risks and downsides. But for me it has probably been the most difficult decision I've ever faced. Part of the difficulty is that for many patients the downsides are few and small, but for some (I don't know what proportion) there are clearly problems after implantation and there is no knowing which group one will be in!
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The balance of benefits vs costs would be much clearer in favour of getting one. There are lots of people on here whose lives have been saved by them and who find living with them quite manageable. It sounds to me like you are right to heed your doctor's advice given your history. For me, whilst I have yet to make a firm decision (I have further tests pending), based on what I know so far I will most probably go ahead with having one. I'm just in the process of doing the "due diligence" to be sure its right for me. 
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