ICD report

[jowalk6]

Hi everyone I am looking for some advice please. I just got my report from my recent ICD reading. It says I had episodes of non sustained VT lasting 27 seconds. Is this something I should be worried about? Thank you for reading x

[Lezzers]

Hi Jowalk6

My husband had 40+ of self terminating VT's (different terminology but I think they're the same thing) and neither the pacing clinic or his consultant were concerned because they self terminated.

Do you always get a report? We were only aware of the VT's because he was having his annual check at Papworth & they mentioned it. The only other time we've had anything was last year when they phoned to say the ICD had shown my husband was retaining fluid and needed to get some meds for it ASAP.

[jowalk6 in reply to Lezzers]

Thank you so much for your reply. I usually get a letter saying if there are any events and battery rundown. I hope your husbands retention has hot better. x

[Lezzers in reply to jowalk6]

Thank you

[Vic67 in reply to Lezzers]

Hi ThereJust to let you know that when I attend my device clinic for a regular check I always request a copy of the report - everyone has a legal right to see their medical records.

[jowalk6 in reply to Vic67]

Hi Vic67. Thank you for your reply, that's good to know x

[Lezzers in reply to Vic67]

Thank you. We were aware that my husband could see his medical records but haven't really been too concerned about the ICD report. Papworth do tell him if there's been an issue & were very much on the ball, phoning him on a Sunday evening to tell him about his fluid retention. What do these reports actually tell you? Are they technical and likely to cause anxiety if not really understood?

[Alison_L in reply to Lezzers]

I've never had a written report; the tech just tells me how much work the pacemaker has done (1.5% at last reading), and assures me that they would be in touch if the ICD sent an abnormal event reading through to them via the home monitor.

[Lezzers in reply to Alison_L]

That's the same with Kevin, I don't think even the cardiologist gets a report unless there is something that needs their attention. Papworth did phone to say all was ok a couple of times after his ICD replacement last year and then phoned to tell us about the fluid retention. I think getting a report is likely to be a bit technical and probably a bit stressful?

[Alison_L in reply to Lezzers]

Yes, I agree. If it's normal, there's no point seeing it.

[jowalk6 in reply to Lezzers]

It makes your mind work overtime x

[Lezzers in reply to jowalk6]

That it does!!x

[jowalk6 in reply to Alison_L]

Thank you Alison x

[BenThom-Wood]

Ah. Now I’ve had episodes of VF which sometimes precede an episode of Torsades de Points. Which then makes my ICD fire.

Has your cardiologist suggested quinidine as an electrical calmer?

[jowalk6 in reply to BenThom-Wood]

Thank you Benthom for your reply. It says they will look at adjusting medications x

[BenThom-Wood in reply to jowalk6]

Well @jowalk6, while the electro cardiologist (EC) didn’t put it in his letter he did say my drugs wouldn’t stop another ICD firing within me. I’m chugging, Aspirin, Atorvastatin, Bisoprolol, Furosemide, & Ramipril.

After the December event they upped my Bisoprolol to 12.5mg initially but then the EC said it could drop back down to 10mg.

When (!) the next shock occurs he wants me on quinidine.

I’ve had the word idiopathic used with me.

Good luck to you both.

[jowalk6 in reply to BenThom-Wood]

Good luck and keep going 😃 x

[Frequentshocker in reply to BenThom-Wood]

Hi Jo and Ben. I can only go by my own experiences and advice given so will share this with both of you as it relates and will hopefully help you both. It may prompt some questions for you both to ask your GP or cardiologists about.

Jo, are you having 3 monthly checks or are you down to less now? It sounds like you could do with a further check to see if you are getting more VFs regularly. An occasional short episode isnt generally a cause for concern but if you continue to get more regular episodes of VFs, or AFs, you will likely be put on meds to calm it. If you get an episode that makes you weak and dizzy and you can't stop it youre at an increased risk of an icd shock so I find immediate rest is the best cure. If it doesnt stop when you've rested a while or you get an ICD shock then Id call 111 and they generally send the paramedics to check you if its heart issues. They will provide an ecg reading and advise but they always say best to go into A&E for a full check. (I keep an overnight bag ready as Ive had so many in the past!) I found if I kept going without or after only short rests the chances were Id collapse and an ICD shock would bring me round every time.

Its best you keep a record of how often you feel the VFs and see how it matches with your ecg checks. I always ask at my check up how many episodes its shown since the previous check up, They can give you dates & times and it may allow you to match what you were doing at that time with what maybe triggered it. Mines nearly always set off by very cold weather, stress or over exertion when Im already feeling weak on that day.

I'm now on Quinidine as recommended eventually by an electrocardiologist. Ive had so many issues with beta blockers previously that they were running out of options so he said forget them, try Quinidine and Ive had very few shocks since Ive been on it. Strangely, when Ive had a shock I've been fully conscious and don't collapse beforehand! The Quinidine certainly suits me far better than any of the beta blockers. I've never heard of anyone else on them to compare with, but my SCAs were typically 'idiopathic', ie no known cause. They seem convinced its genetic but don't know much about it overall. I just suffer from AF and VF since my SCAs, that all.

The Quinidine's on hospital prescription only, signed by my cardiologist quarterly and they order it from France so they require a few weeks notice. I order it via email to my cardiologists secretary 4 weeks before my supply runs out and it is available nicely in time. On ordering you need to ask about deluvery or collection, theyve been delivering to my home each time through covid but I was advised to mention this as its my cardiologist who signs and marks it for delivery. This saves me a 4 bus trip to collect it from the hospital pharmacy now I can no longer drive!

Providing I don't take the full dosage recommended I can avoid the dodgy tum it causes daily. Some ppl find it settles down in time apparently but I always had an upset tum after the morning dosage so I cut that one out and only take the bedtime one. I found I couldn't go out of the house until after Id eaten and spent half the day in the bathroom first. If you start taking Quinidine just be aware of that side effect in case it affects you too. Morning appointments were a no go for me but you may get used to it or find it doesnt have that effect, we are all different in that respect. However in last summers heat I had a severe 'episode' of VFs that just wouldnt calm down all day and I couldnt stand up without making it worse yet surprisingly my icd didn't shock. I ended up calling paramedics when it set off a bad angina attack too as I feared what was going on. Straight into hospital and they informed me I was having a severe episode and was also having approx 12 episodes a month! I was aware of some but usually just take another Quinedine tablet and rest completely when that happens. The technician decided that most of those VFs were probably AFs (and asked me if its ok to record it as that! Im no expert but went by their advice) Then the cardiologist wanted me to take calcium channel blockers on top to stop the AFs. I was so ill on them and after a 4 wk trial my own cardiologist said stop them and increased the quinedine instead, suggesting I simply take some other meds to cure the upset tum it causes. They insist the regular AFs and VFs are calmed with meds as, left untreated, it can shorten your lifespan. I have this dilemma now as I feel ok on the original dose so I only take an extra one if I feel the VFs getting bad or if Im going into stress or extreme cold. Im aware I need to take the full dose to reduce the VFs and may have to persist along with meds alongside to cure the upset tum it causes. I really think its a balance of quality of life v filling myself full of meds to counteract side effects of other meds to hopefully cure the fibrillations. I had thought having an icd fitted would cure any SCAs but they want to stop the fibrillations that cause the ICD shocks. It seems to be a trial and error method of finding what meds suit best. Im also on warfarin as I had a dvt after my ICD was fitted but I take nothing else daily apart from Quinidine now and glad of it!

Sorry its a long one but I hope some of the info will help you both. Do let us know how you both get on. Good luck!