icd experiences welcome

[captscott]

I've been advised to have pacemaker/icd fitted, as lvef 30-35%, previous MI and LV wall damage and regard as high risk candidate for scd. Despite trade off, I'm still worried about long term problems with arm movement, vein problems, lead problems, unnecessary shocks etc .Other people's experience of these issues would be appreciated

[sturon]

Hi Capt Scott.

My husband had an S-ICD implanted over two years ago following a cardiac arrest. He was luck that I was able to perform CPR and an ambulance was near bye. After three weeks in hospital including a period in ICU he recovered well enough to have an implant. The cardiac arrest was caused by long QT syndrome; A condition which means you are more likely to have sudden cardiac arrest.

Since the implant we took a few months to recover from the shock of the event, but life slowly returned to 'normal'. Well until March of this year when the virus arrived.

We enjoy travel and until March of this year have taken our bucket list and made sure we have made the most of every second. Last November we toured Japan and have take a few cruises and lots of sunshine breaks.

I think what we would say is, go for what they advise. My husband has found he can forget about the devise now and have the reassurance that he has a paramedic with him 24/7. It has not limited anything he wants to do and I am glad I don't need to brush up on my CPR training! Since the implant he has a weekly check up over the internet his devise is connected wirelessly to the download kit in our home. He has the reassurance that they are keeping an eye on him. He has not needed any treatment delivered by the devise and long may that be the case.

We hope our positive experience help you, but do drop us a message if you want to hear more from us.

Our very best wishes. Stuart & Ron.

[captscott in reply to sturon]

dear stuart and ron

thank you so much for your account of your husband's close encounter with SCD. Its very fortunate you were trained in cpr! it must be a great comfort to now be able to get on with life with the additional security of the icd back-up in situ.

Fortunately so far I've only experienced a MI. I'm now recommended to have a icd/pacemaker with two leads as a primary prevention because my LVEF has decreased slightly to 30-35% and i have both an enlarged lv and quite a bit of wall damage which i believe increases the risk of a SCE/SCD, as the heart electrics are more unstable. I'm otherwise pretty much asymptomatic. So its really a no brainer, but I.m just worried about longer term issues with the icd leads veins etc - s-icd seem less risky, but don't. think its an option for me

Thanks again for your account of your positive experience after then shock event. I hope you continue to work through the bucket list ,once covid travel restrictions are lifted.

will let you know if i have any more questions

very best wishes for the future and lots more happy travels and experiences

CS

.

[Hanibil]

Hi I had one implanted 18 months ago and have had no problems with arm movements or anything else

[captscott in reply to Hanibil]

thank you for replying so quickly. hope it continues to be trouble free

[Gordon_N]

Captscot, hope the following re-assures you. I had cardiac arrest in May. Very lucky to be de-fibed back to life after 15 mins of CPR. Had an ICD fitted few weeks later then two stent two days after that. During stent placement ICD tripped and gave me a bit of a shock, but otherwise no issues since. You need to restrict left arm movement for couple of months to let leads settle.

3.5 months later I'm back on my bike doing BHF Mycycle (300 miles in 30 days) - 50 miles later today. PS - I'm 60 year old male - celebrated this land mark birthday 5 days after cardiac arrest, on ventilator.

All the best - as per previous comment you are going to have your own personal paramedic - what's not to like?

[captscott in reply to Gordon_N]

hi gordon

thanks for the reassurance as i mentioned above to stuart and ron i am fortunate to not had a cardiac arrest as such like you However am at risk due to factors like previous mi, hf etc, so as you say what's not to like - i'm just a worrier

sounds like you arm's recovered well and good luck with the BHF Mycycle event - 50 miles a day is something!

thank and best wishes CS

[Hidden]

Hi there. I’m 48 years old and have a very similar story to yours. STEMI in early 2019 leading to extensive anterior LV wall damage, with EF measured at 34% by cardiac MRI back in January. Recommended for ICD which was implanted at the end of May.

I’ve had no problems at all and, like you, am essentially asymptomatic. Arm was sore for about 2 weeks but now I hardly know it’s there. Based on my desire to continue regular exercise (5k run every other day & some weights) they went for a single-lead device with atrial sensing, which apparently differentiates very well between exercise-induced HR elevation and something bad. The single lead devices are apparently easier to implant and have a smaller risk of complications. Hope that’s helpful.

[captscott]

Thanks Jonah that's very helpful. Glad your experience has been so good and your exercising again. Apparently I'm due to have two lead, combined pacemaker/icd - probably because I also have enlarged left ventricle and damage to inferoseptal wall as well, with akinesis etc . However will check with doctor as id like to minimise complication . thanks again for taking the time to tell me about your experience best wishes cs

[Thanksnhs]

Hi I had an icd fitted for dilated cardiomyopathy and severe heart failure, It gave me a lot of reassurance that if something did happen I would be ok we went abroad a few times a year with no problems at all, I was really glad to have it, you have to inform your insurance company and the dvla, mine fired once when I was sleeping and I never even noticed, the hospital phoned a few hours later to tell me to go straight up, they did say it was quite unusual, as my cardiologist said I was lucky I had one, I live alone so I think that would have been that,I had to surrender my licence for six months, I hardly noticed it was there after the initial six or so weeks, I am very thin so you could see it but that didn't bother in the slightest, my lifesaver so to speak, it's gone now I had a transplant 8 weeks ago, if it's recommended I wouldn't hesitate for piece of mind, I also had a home monitor which downloaded the data to the hospital, thats how they new it had fired, take care char

[captscott in reply to Thanksnhs]

Thanks for reply. Did you have any problems with arm movement leads infection or pocket after first 6 months. Im thin too so worry it sticks out and gets a hit. Not too worried about 4he cosmetics at my age! Anyway it sounds like it saved your life at least once. Thanks again for replying best wishes with the new heart cs

[Thanksnhs in reply to captscott]

Hi leads and everything else was fine, no problems with the device or infection, the scar was very neat and faded well, but I did get a frozen shoulder, they said I had either moved my arm too much or too little, I got physio and an injection, it's been fine since, char

[captscott in reply to Thanksnhs]

Thanks for info thats good to hear. Good luck with the new one cs

[Yass_123 in reply to captscott]

Hi just wondering how u r did u do the icd I too am a worrier half me says do it the other is afraid good luck

[captscott in reply to Yass_123]

I’m still working up to it. Almost there in the head, think I’ll finally doing it January. Will let you/know Thanks for asking

[Yass_123 in reply to captscott]

Wishing you all best i think if we had to do it in an emergency we would but we have time to think about it that's why we worry more

[captscott in reply to Yass_123]

Yes you’re right. A lot of people wake up with one after having been revived from sudden cardiac arrest or suffer from fainting episodes etc. before hand. Anyway statistics seem to support the idea of having one the older you get. Have a look at the Seattle heart model on internet which gives average odds of having a sca ,with drug therapy , and then added icd , compared to doing nothing. Drugs have the most impact in reducing the risk... anyhow good luck with it

[Yass_123 in reply to captscott]

Thank you I will look into it and what does the age group mean when classed as old if drugs help good luck to you also i have also been reading about a s icd which involves less leads and less side affects i will ask my cardiologist about this

[captscott in reply to Yass_123]

hi yass sorry for delay in replying been distracted this week. Basically absolute risk increases with age ,though icds help most when you're young and otherwise fit, but have heart related issues. The latter increases the proportionate risk of dying from heart problems compared to other causes of sudden death risk. S-icds also best if your younger age group ,as you will likely need to have several during the course of a lifetime. issues mainly shorter battery life and lack of full pace making functionality, but i read the latter is coming soon through wireless connectivity to a separate implanted device - apparently tiny. best ask your cardiologist as i'm o expert and have a look at boston scientific site . hope this helps a bit. i'm still agonising about when to do it, as i apparently need a t-icd

[Yass_123 in reply to captscott]

Thanks for your reply does 53 count as old 😀 good luck to you wishing you best in whatever u decide

[captscott in reply to Yass_123]

no you're still young! I'm an oap so further along the path...if you can do it, ask about the s-icd options ,as you'll likely need a few replacements going forward. anyhow good luck with decision . i guess i'm going to have to take the plunge in january...

[Yass_123 in reply to captscott]

I wish u the best of luck and keep us posted and instead of worrying till then enjoy uself

[captscott in reply to Yass_123]

thanks you too. will let you know how i get on