Advice / opinions please

[Shabana1974]

I had a follow up with Cardiology yesterday. Just trying digest and see what's the best route to take. I have 6 months to decide.

Below is extracted from my clinic report letter

"We discussed today that she is on maximal medical therapy and that she would qualify for a primary prevention defibrillator, however this would result in restriction from driving (especially if she had a shock delivered) and also from arm movement initially as she is a carer for her husband. We decided that we would review her again in 6 months with a repeat holter monitor to assess ventricular arrhythmia before committing to device implantation. She understands that this would not provide any symptomatic benefit"

What should I do, what's the best route. I am currently 49 I will turn 50 in September?

Should I have the Defib Fitted?

Many thanks for reading

[Gordon_N]

Shabana, the driving restriction is only for 6 months. I had an ICD fitted 4 years ago after a cardiac arrest. It has already saved my life once. Look on it as a form of life insurance. All the best.

[Shabana1974 in reply to Gordon_N]

Thank you, I guess it's because I am my hubby's sole carer. But on the other hand I am no use to him dead

[Lezzers]

My advice is have the icd fitted, it's your very own paramedic looking after you 24/7. My husband is on his 2nd ICD, the first one was fitted in 2012 & he did't receive any shocks until last year when it saved his life more than once.

If it's being fitted as a precaution you will only need to stop driving for a month. I understand how difficult it will be for a few weeks looking after your husband but can you not get family to help? Who would look after your husband should anything happen to you if you don't have the defib?

Good luck.

[Shabana1974 in reply to Lezzers]

Thank you, I guess that makes sense. The cardiology Dr said to me no driving for 1 week and no raising arms fo 6 weeks

[Lezzers in reply to Shabana1974]

If you're in the UK it's 1 month no driving after having it fitted and you need to advise the DVLA. If you are in the UK then unfortunately your Dr is wrong when he says it's one week. I've posted the DVLA link below, you'll need to scroll down to the part about ICD's. Hope it helps

[Shabana1974 in reply to Lezzers]

Thank you yes my drs based at in Harrow. I think he was trying to basically say its not a big op etc I pretty sure he would have told me the full truth once I was there for the procedure

[Lezzers in reply to Shabana1974]

It's not a big op at all, it usually takes about an hour. It's generally painless though you might feel a bit of pushing & shoving in which case just tell them if you're feeling uncomfortable. I'd be surprised if your Dr wasn't telling you the whole truth before you had the op, that would be more than his job is worth, I think he's just got the driving bit mixed up as it's only a week no driving after a revision of wires or change of battery. I would mention it to him as he'll probably be telling over patients the wrong info.

Good luck 🤞

[Shabana1974 in reply to Lezzers]

Thank you. So a bit like when I had Angioplasty?

[Lezzers in reply to Shabana1974]

I'm so sorry, I've no idea what is involved with angioplasty. But with the icd being fitted, they open up a pocket in your left shoulder & the ICD is fitted into the pocket so that it fits snug & then they attach the wires to your heart, probably through a vein but it was so long ago my husband (he's the one with the ICD) can't remember. But, the thing to remember is, this is bread & butter stuff to the cardiologist they do these OP's routinely. Obviously there's always risks involved with any op but they'll go through them before hand & of course they'll always tell you the worst case scenario, don't he scared to ask them how confident they are. My husband had a trainee fit his first ICD, though it was fitted under the supervision of his cardiac specialist.

Edit: most people go home the same day as they have the op, so that's a question to ask. My husband stayed overnight for both his initial ICD fitting & the battery change years later but that was only because he has very complex health issues

[Shabana1974 in reply to Lezzers]

Thank you this has been very helpful

[fishonabike in reply to Lezzers]

most doctors are not fully aware of the DVLC regulations - In this situation my guess is the week quoted by the doctor was their recommendation for the immediate post-insertion period - beyond that is way beyond their field of expertise

but it would be helpful if they at least had printed info sheets on the implications for driving of various heart conditions ......... in an ideal world!

[Lezzers in reply to fishonabike]

We've found in the cardiology world that most experienced drs are aware of the driving issues around heart devices as they're the ones that advise you re driving restrictions etc. There is also a DVLA guidance manual for professionals that is quite in-depth & which they should refer to. However my guess would be that a Dr will probably only read the bits that are relevant to them & their patients at that time!!

gov.uk/guidance/assessing-f...

Ps: I'm not sure what you mean by the 'immediate post insertion period'? Do you mean from a medical or driving point of view? The fitting of a new ICD (depending on the reason it's being fitted) is always a minimum of 1 months no driving. One week no driving is only when you have a box change or revision of leads or if it's a pacemaker

[Shabana1974 in reply to Lezzers]

Thank you very useful link

[Milkfairy Heart Star in reply to Shabana1974]

The DVLA has updated the information to healthcare professionals recently.

The advice has changed see this link.

gov.uk/guidance/cardiovascu...

[Shabana1974 in reply to Milkfairy]

Thank you

[fishonabike in reply to Lezzers]

i am glad to hear that your experience around this has been good - although my own experience does not relate to implanted devices it has been different

as a result i posted about an update in the DVLA's guidance on driving with a heart condition earlier this year

by "immediate post-insertion period" I meant the period immediately after the insertion of the device into the person, i.e. a period of days of weeks

[Lezzers in reply to fishonabike]

I'm sorry your experience hasn't been great, sadly it happens. My husband is under 2 hospitals for his cardiac care & we can't fault either one of them. However, his cancer care under a completely different hospital has been shockingly bad, he's now transferred to another hospital & the difference in the care is astonishing.

I did understand what 'immediate post-insertion period' means I just wasn't sure whether you were referring to just the driving issue or something else. But I think you're saying the drs personal recommendation being to not to drive for a week? In which case all the more reason for someone to tell him he's got that wrong, giving the wrong info could potentially cause all sorts of problems for the patient & other road users. At the very least he should advise patients to contact DVLA for driving restrictions.

Interestingly though, when my husband had his first ICD, many years ago, it was fitted as a precaution and at that time it was 4 weeks no driving and he did not have to notify the DVLA. Over the years that changed and it became compulsory to notify the DVLA. Not something we were aware of until I read about it on a support site! When he had a VT storm the hospital not only told him it's 6 months no driving they put it on his discharge papers. When 3 months later his ICD fired, they advised the 6 months no driving started again & again that was noted on his papers. So he's no driving was 9 months in total.

[fishonabike in reply to Lezzers]

i am delighted that you have had good experience - but sadly many do not and they often ask for information here for precisely that reason

i'd also like to add that you are lucky if you only encounter doctors who welcome the infomation and advice you share with them - again this sort of experience is not universal - i am far from being alone in finding that many professionals (including medical profesionals) do not welcome info and advice from their service users/clients/patients or other "laymen"

the whole point of this forum is to provide info and support for people who have had very different experiences to your better ones

[Lezzers in reply to fishonabike]

Wow!! You sound a bit defensive and I have no idea why!

I can't see where I've said that we've only encountered drs who welcome & share information, in fact I can't see where I've even said I've shared any info with drs!! But yes, if a Dr told me incorrect information I would let them know, most of them are human and can be appreciative!

And again, there is nothing wrong with having a good experience and sharing it, not everyone is negative. For every dozen people who've had a bad experience there's probably a dozen who've had a good experience. Yes, my husband's cardiac care has been good & as I've already said his cancer care has been shockingly bad, no doubt there's millions of people out there with similar stories, different issues & medical conditions!

I agree, the whole point of the forum is to provide info & support!! I've answered the OP's question re ICD's and driving as I have experience of that, I always make a point of not answering/commenting on posts when I have no experience of the matter raised.

I'll leave you to your day, sometimes it's a good idea to switch off your phone/computer/tablet and just enjoy the sunshine.

[Milkfairy Heart Star in reply to Lezzers]

The advice has changed.

gov.uk/guidance/cardiovascu...

[Lezzers in reply to Milkfairy]

I'm not sure what guidance has changed but the rules around ICD's & driving don't seem to have changed, from what I'm reading the advice is the same as last year. The DVLA do update the info every year though

[honeybubs]

I agree have it fitted! I’ve had my pacemaker defibrillator for a year now and I feel much more confident knowing it will save my life if something should happen. It does take quite a few weeks after it’s fitted for everything to get settled they say you can’t lift your arm up for a long time so that the leads bed in. So get button up tops and pj’s. Good luck. X

[Shabana1974 in reply to honeybubs]

Thank you, that makes sense currently all my tops are pull over the head. I guess it because I hubby's soil carer but I guess I am no help to him Dead.

[Eleneh84]

I had my pacemaker fitted after a heart attack as a precaution and have a monitor by my bed 2 years ago. it's just a precaution better that then the other alternative. You soon get used to it and have not felt it go off. It does have restrictions ie going near microwaves and induction hobs etc. So yes as an insurance I would. Travel insurance does cost you more

[Shabana1974 in reply to Eleneh84]

Thank you hearing everyone's experience has been very helpful