ICD FITTED OR NOT: I would liked to ask... - British Heart Fou...

British Heart Foundation

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ICD FITTED OR NOT

Tinodog
Tinodog

I would liked to ask the group their opinion

I am a 54 year old man who had a heart attack in June this year which required a stent that was fitted successfully as an emergency

The discharge summary was the below.

Diagnosis:​Extensive anterolateral MI June 2019 treated with primary angioplasty to left circumflex

​Ejection fraction 30-35%

​Hypertension

It was noted at the time of the first stent that I had a blocked RCA and it was decided to attempt to unblock with another PCI . This was carried out but failed due to the vein being too small

The consultant was not concerned as he could see that the heart was receiving blood and oxygen via other means .

I have just had a follow up echocardiogram which shows that the EF is still at 30-35% and unlikely to improve . They are pleased with my lifestyle changes and I feel great and am excercising regularly with no pain or angina symptoms

In terms of an ongoing plan he had suggested I should have an ICD fitted and to see it as an insurance policy and has written to the consultant to arrange

My dilemma is that I visited my GP to update him and he had raised concerns as to why there is a need to have the operation when there is no history of arrhythmia .

Should I seek a second opinion as this had now raised doubts in my mind

Would appreciate any feedback

51 Replies
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Jo

Appreciate your feedback which is similar to that of my wife’s.

The doubt has only come from my GP s comments

As far as I’m concerned the specialist saved my life

I am also fortunate to have insurance cover and they have confirmed the procedure is covered although the wait list is not long on the NHS either

I guess I am still coming to terms with everything that has happened and deep down know what I should do but just a little scared of having another procedure

Mark

Wodney1966
Wodney1966 in reply to Tinodog

I've got a icd fitted dont even know it's there as a safety net 👍👍👍👍👍

Tinodog
Tinodog in reply to Wodney1966

Thanks for the feedback I feeling more comfortable with each reply

When and under what circumstances was yours fitted

Mark

Wodney1966
Wodney1966 in reply to Tinodog

I've got heart failure cardiomyopathy af lost my dad n grandad to a cardiac arrest

Dodger
Dodger in reply to Tinodog

I have had an ICD for 4 years, like the other posterI don’t know it’s there most of the time. I have a home monitor which the hospital contacts every few months and I visit the hospital for a check once a year.

MichaelJH
MichaelJHHeart Star

For arrhythmia alone a pacemaker would be fitted. Your consultant is offering an insurance policy in the case of a heart attack and/or cardic arrest. One saved the life of my niece's father-in-law earlier this year. Your GP may be jumping to the wrong conclusion.

Tinodog
Tinodog in reply to MichaelJH

Thanks Michael I believe you are right

mandm65
mandm65 in reply to MichaelJH

I don’t think its a foregone conclusion Michael, unless I am an exception, lol.

My husband has an ICD, he's was fitted when he was 57. I would definitely go with the consultants opinion as he's the specialist. Hopefully he's already told you the pros & cons of them. My husbands EF was 35 when it was fitted it's now 30. It was fitted as a precaution having previously had a cardiac arrest & it has corrected his heart rythm a few times stopping him going into sustained VT. It is an expensive device and they're not offered lightly.

Tinodog
Tinodog in reply to Lezzers

Thanks lezzers

Similar age and circumstance

Appreciated

Lezzers
Lezzers in reply to Tinodog

My husbands nurse & GP often used to clash over meds, treatment etc. Can't fault the GP in anyway but when we mentioned it to a cardiologist he said "GP" is a general practioner not a specialist. Btw, have you been referred to a heart nurse?

Tinodog
Tinodog in reply to Lezzers

I’m currently halfway through the rehab with Bournemouth hospital

It a bit complicated in as much that I have been seeing the consultant privately since heart attack since have to keep copying the hospital in on letters etc

Lezzers
Lezzers in reply to Tinodog

Seeing a cardiologist privately does not stop you from being referred to a nurse just makes it a bit more complicated that's all as they are your intermediate between GP & cardiologist. Under NICE guidelines you should be referred if you have them in you're area. Ask your GP for a referral, they're worth their weight in gold, got advice support etc.

Yes, that's exactly what they do. My husbands icd has corrected his heart a few times and stopped him going into sustained VT.

I had a heart attack in December 2018 and went into cardiac arrest. The Echo in Feb 2019 still showed an EF of 30%. In a review with the consultant in April he suggested that I may be at risk of having an arrhythmia in the future and that he wanted me to consider having an ICD fitted as an insurance against me having a cardiac arrest. I went back at the end of April to discuss it with the consultant who would be doing the implanting and agreed to have it done.

I had an ICD fitted 2 weeks ago, in and out of hospital on the same day. I'm under the Liverpool Heart and Chest Hospital, and they do these operations 7 days a week - amazing service.

These people are heart specialists, and if they say that I should have an ICD fitted, that's good enough for me. It's an expensive piece of kit and I'm sure the NHS doesn't offer them if there wasn't a need to have one. I discussed it with the cardio rehab nurses. When I asked my GP about changing one of my meds in Feb I got the "I'm just a humble GP speech", and was told to talk to consultant at next review, as a result I didn't even consider asking my GP

One final question

What are the restrictions on driving after the procedure

MichaelJH
MichaelJHHeart Star in reply to Tinodog

No driving for a month post ICD fitment then only with GP/cardiologist's OK.

Lezzers
Lezzers in reply to MichaelJH

Michael It's a month no driving if the ICD has been fitted as a precaution. If its been fitted due to an event then it's 6 months.

MichaelJH
MichaelJHHeart Star in reply to Lezzers

You are right it 7 days for pacemaker only - I mis-referenced! :( And, yes, six months if fitted for CA or if it has kicked in.

Just for a bit of balance....my husband’s ICD was fitted after his NSTEMI and stent & EF of 30% (he was 67 & very fit/athletic) consultant said it was a precaution. Implant followed a post HA collapse (syncope) which was scary. It has taken 2 years for him to get used to the device. It is very prominent in his chest and as a result difficult to forget it’s there. It also moves about & so he worries about some gym exercises and pulling on the wires. In the early days he regretted having it as it was a constant reminder of the HA. When you have the op discuss having it put under the muscle. It’s a bit more uncomfortable initially ( I believe) & recovery a bit longer as it’s a slightly longer op, but it won’t be as noticeable and in my view you’ll come to terms with it more quickly. You’ll still be out of hospital within a day or so. For my part I’m delighted my husband got it. It means I’m not watching his breathing all the time in case it stops! Good Luck.

MissisF
MissisF in reply to MissisF

PS he’s back at the gym😉

Ahha, that dilemma, I know exactly what you are going through.

Welcome to forum and you have been given very valuable advice thus far.

One piece of advice i can give you is that we can share our experiences here but its best to listen to the experts. Just to elaborate on that, prior to my diagnosed, I was fit and healthy runner, ran regular marathons for over 10 years. No family history of CHD or Diabetes. Never smoked or abused alcohol. Maintained healthy weight/BMI with sensible Mediterranean style diet.

Diagnosed with Type 2 diabetes in 2016 and subsequently diagnosed with CHD 2017, 3 stents were implanted but later that year suffered a heart attack. The damaged heart muscle then developed Arrythmia and recently was evaluated for a device (ICD) implant.

All of the above within 3 years.

I am slightly baffled that why you are not referred to EP consultant/EP Study! Having said that EP study did not help my cause so I cannot be certain that it would be conclusive but nevertheless its an option, after all it’s the EP consultants who performed the device (ICD) implant.

I have documented my dilemma/outcome here so feel free to take a look at the below links. If you have any question do come back and I would be happy to answer.

Hope above helps

healthunlocked.com/bhf/post...

A GP is rarely an expert in these matters, ofterno more than a pill seller, listen to the specialist.

Lezzers
Lezzers in reply to Khonkaen

A GP is certainly more than a pill seller! True they are not experts in certain conditions (though some GP's who have an interest are) however, they are highly trained in general medicine & not everyone has complex medical needs. Our GP is both supportive & caring, certainly if it hadn't been for the vigilance of his GP there's a very strong possibility my husband would not still be here today.

MichaelJH
MichaelJHHeart Star in reply to Khonkaen

A rather unfair comment on GPs! They have to deal with an overwhelming number of areas. My GP of thirty years was very supportive over the years and had a lot of expertise in diabetes (used to do hospital outpatients), and pre and post natal care (never needed by me 🌝). Because of the number of patients with heart problems he had strong knowledge but was obviously not a cardiologist. They do not sell pills but prescribe as and when required, and generally within NICE guidelines. Medicine is becoming ever more complex and despite ongoing training they cannot know everything!

Khonkaen
Khonkaen in reply to MichaelJH

Precisely my point and the vast majority of cases GPs deal with are quite trivial, whereas a cardiologist is not only trained, he is kept up to date and is dealing with such cases day in day out. I know who's advice I am most likely to trust, if you GP agrees with the specialist all well and good.

Lezzers
Lezzers in reply to Khonkaen

I would certainly want and expect my GP to question any advice from a consultant/specialist if they are dealing with my health. One reason being the GP can learn in this way and the knowledge could be useful to another patient, plus specialists do on occasions get it wrong which would perhaps go unnoticed if questions were not raised.

I can only speak from my own experience, with some knowledge of their basic training that a pill fixes everything and questions i have posed in the past. The specialist has special and often extensive training and has the skills to offer a more informed opion.

Lezzers
Lezzers in reply to Khonkaen

There are good & bad GP's though in my experience theres more good than bad out there. Our GP takes an active interest in my husbands heart condition & his care is a 3 way thing with cardiologist. If you're finding your GP is just dishing out pills maybe it's time to find another GP.

Rather have it and not need it than need it and not have it!

Like MissisF, I have to temper the enthusiasm for them. I had mine fitted 14 months ago (age 56) and I most certainly DO know it's there. It seems to move around in its pocket, and I keep pulling the chest muscles around it when I try to do any arm exercises, so I'm limited as to what I can do in the gym. All very frustrating.

However, as others have said, it is not offered lightly, and if they think you need it, you should certainly take it.

It good to see a balanced view of living with an ICD

My GP has been brilliant with me over the years and I have the utmost respect for him , as I do the consultant.

Really appreciate everyone’s input and I will update the post when I have spoken with the various specialists who have been out this week due to the BH week

I have just got back to playing golf again without a buggy but I guess that will be a no no for a while

I would be more inclined to listen to my cardiologist rather than my GP, as he is not the expert here. At the end of the day, it’s only the GPs opinion and I sometimes think that they do speak out of turn, piling on more anxiety

have have one fitted have found no problems with it is a safety back up

I had my first ICD fitted after an out of hospital cardiac arrest and subsequent various stents when I was 45. I'm now 61 and on my 3rd one. I have found mine easy to live with and it probably provides my wife more than me with reassurance that I am covered in the event of anything going wrong again. Mine has never needed to shock me but recently has been pacing me following unrelated heart surgery on my valve. I have a friend whose ICD has fired a few times but he says whilst not pleasant, it is keeping him alive. My GP is great but my consultant is the expert and these things aren' t cheap so my understanding is they don't tend to recommend unless they feel it will offer viable benefits.

Hi Tinodog

The Consultant I am under is Dr Talwar.

I have had both Stents and CABG on my last appointment he told me, my pacing is OK at the moment but in future may require intervention !! my EF is currently 43 % but has been down to 27 %. Before anyone goes down the ICD route I believe they need to have been Maxed Out on Medication unless it is an Urgent Procedure. I am in the process currently of being maxed out on Entresto (already Maxed out on Bisoprolol ). Heart Failure Nurses are located in Bournemouth, Wimborne, and Poole so lots of choice lol. If I was you I would go for the ICD asap these things are not decided upon just by one Consultant as far as I know. so looks like you need an ICD to take care of you !!

regards

Thought I would let the group know that I am having the ICD fitted on Tuesday

The EP was great and explained in detail why I was right for the procedure

Having just got used to being back to the new normal 3 months after the original HA I am obviously apprehensive about the future but also confident for the reasons it’s being fitted. the EP said I should not get hung up in the 32- 35% EF as I was training and golfing without any problem

I was like let the group know how it goes and any advise will be welcome

Also any golfers out there with an ICD ad would like to know their experience

Happy hearts

Mark

Good luck with the op, it's usually an in & out same day job. You'll be a bit sore for a while, be sure to ask for painkillers and definitely follow the aftercare advice to a tee (⛳) There is a closed facebook support group called ICD-crtd support uk that might be of interest to you, you'll definitely find golfers there.

Tinodog
Tinodog in reply to Lezzers

Thanks lezzers

Are you a medic as you always seek to be on the ball

Mark

👍

Lezzers
Lezzers in reply to Tinodog

No definitely not a medic!! I've been dealing with my husbands heart condition for nearly 22 years, and his HF & ICD since 2012. I am a bit passionate about helping people find support if they need it, there was none around when I needed it and it was a very scary place to be!! Obviously, no one has to take my advice, my husband rarely does! 😂 Ps: you might also want to check out the Pumping Marvellous website & Facebook group, highly recommend them.

Tinodog
Tinodog in reply to Lezzers

Thanks lezzers

Appreciated your support

I too have been passionate around heart conditions due to my niece having Marfan’s since the age of 30 with 3 10 hour plus ops and she is currently recovering from her latest 13 hour op of a dissections and aortic valve replacement

I just happened to join the party

Mark

Lezzers
Lezzers in reply to Tinodog

Wow, that's a lot for someone so young to have to go through. I've never heard of Marfans?

Lezzers
Lezzers in reply to Lezzers

Just Googled it on the NHS site. She has my very best wishes, very difficult condition.

Tinodog
Tinodog in reply to Lezzers

Yeh but she is amazing and as the condition generally affects older extremely tall women she is somewhat on her own when it comes to forums but we have raised her vet 20k for the BHF who she worked for

I did a 50k walk through the peaks last year in a day and so did she

She remains my inspiration she nice my pulled muscle 😀

Tinodog
Tinodog in reply to Tinodog

I meant over 20k

And since my pulled muscle

Lezzers
Lezzers in reply to Tinodog

Very inspirational, both of you

Latest update on ICD

It was fitted last Tuesday and everything went fine

One question to the group

It feels really tight which I guess is normal and I have changed the dressing a couple of times

How long does the tightness last for those who have had the procedure and when did you completely remove the dressing

Any other feedback much appreciated

Hi Tinodog, my husband has an ICD, his was fitted in the 2012 & he remembers the tightness feeling but he can't remember for how long. Spiritofthefloyd has had his fitted recently, I'm sure he'll be along soon with some advice.

Hi Tinodog

Welcome to the fairly exclusive club of ICD!

I had mine fitted on Monday 19th August, so that's now just over 5 weeks.

The first night the site was red and angry as I'd have expected, but not so much that I needed painkillers.

The site did feel quite tight for about 2 weeks skin sore and swollen, during that time I pretty much put my feet up, but after 2 weeks started getting busy as boredom was setting in.

After 3 weeks the swelling on the site had pretty much gone - I could then feel outline of the ICD, before it was just a swollen lump, still a little swollen

By 4 weeks, all swelling gone, using arm a lot more

After 5 weeks the site is good, my mobility in my left arm is good and getting better every day.

I can't offer a comment as regards dressing, as my wound was closed with Monocryl (dissolving stitches) and finished with Dermabond - a glue, so there is no dressing to change, the glue just drops off after about 2 weeks - yet more clever stuff!

Best wishes and I hope your recovery goes well.

Thanks spirit

Good to hear from a recent procedure

I am only on week 2 and a lot of the bruising is fading now .

Just need to remember not to raise the arm above the shoulder especially at night in bed

Yes, forgot to mention that - not raising your left arm above the shoulder! Sounds easy that, so so difficult 😒😒

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