QT prolongation - terrified I'll need an internal defibrillator

[Stuffthisstuff]

I have severe health anxiety and trauma around any medical procedures. Two years ago I discovered I had a QT prolongation. I've just discovered it's worsened since then.

I've been referred to cardiology and the GP mentioned that an internal defibrillator would be considered if it got worse.

I am absolutely terrified. I have a lot of other health issues, all lifelong and debilitating fear even over something as simple as a blood test.

I don't really know what I'm asking. It looks as though there's nothing that can be done to make it better in terms of lifestyle changes, diet etc. It's not something I can't Google and it all looks horrendous.

I also know I'm being a bit pathetic but this has completely blindsided me (I want to the GP with something else).

Went not want!

I have no adv ice for you (I have a different set of arrthymias) but didn't want your posts to be unanswered.

Is there a cardiology nurse you can talk to? Or a heart charity helpline?

Easily said, but try not to panic. If it was panic -worthy, they wouldn't be waiting for a referral to cardiology, you'd be on your way to hospital now.

I have had an ICD for about 15 Years, I’m mid 40’s.

I’d rather not have had to have one but it’s really fine, I don’t think about mine 99% of the time. I had it inserted following a VF. The technology is amazing and has vastly improved over the years, they can remote monitor it now so you don’t even have to go for check ups that often. I run, swim cycle, and live a completely normal life (also gave birth twice)

I did go to a support group that the hospital ran shortly after having it in and that was really helpful. I would ask about that, it might help to talk to others in a similar situation. Good luck and try not to worry

Thank you so much for replying - I sort of feel a fraud as I don't know what the outcome will be, and I'm sure any helpline would just tell me to wait. Sadly, my anxiety doesn't work like that!

You're right thought - just a referral is not the panic mode for them. I know my kind is racing ahead but it's very difficult not to do that especially given how I know I react to even the thought of medical involvement. I did get CBT to try and help when it was previously a problem, but it didn't.

I hope you're well with your own health worries

I'm so sorry I didn't see your post when I replied ICDgirl - that's all so good to hear. It sounds like you live a really full life. How often does it need replaced? Was the procedure itself an awful one (my baseline of 'awful' is pretty pathetic to be honest!). That's incredible that you gave birth twice too!

Hi stuff I have an ICD too and rarely think about it. I did not find the procedure bad - it was done under local anaesthesia but they sedate you and it is over quickly. Little bit of pain for a few days after but nothing too bad. I’m fairly lightweight about pain although not particularly squeamish so I don’t know if that’s helpful!

My cardiologist said it should last 10 - 12 years.

I’m much happier having it than worrying about sudden cardiac death all the time (my father died of this and I have the same condition).

I had a battery replacement after about 8 years and then a full device replacement about 2 years ago as there was an issue with the wires but, like Nobby says, the procedure isn’t too bad and I am pretty squeamish as well. They did put the first one in under general but everything else has been under local with sedation. It’s such a routine op, (v similar to a pacemaker insertion that they do all the time) so I’ve always felt in very capable hands. I’ve got a fancy new one now that means you don’t have to be as careful around magnets and will probably last a lot longer.

They are working on rechargeable ones now which means no battery replacement!

What’s your condition ICDgirl? I have lamin a/c cardiomyopathy.

OP I don’t want to minimise if it’s something you’re very worried about - but honestly it’s a very simple procedure compared to other things - I was home the same day and back to work a few days later. I complained a lot more after I had my wisdom teeth out!

Talk to the charity SADS UK, you'll find lots of info and people with experience to talk to.

My ICD was inserted following a ventricular fibrillation (so a cardiac arrest) that I was lucky to survive but I already had a pacemaker in at that point because of atrial fibrillation that was causing fainting so they just swapped it to an ICD.

I then had a sinus node ablation a few years later which seems to have improved both ventricular and atrial arrhythmia. I also have a prolapsed mitral valve which causes some cardiomyopathy in my left ventricle so the valve might need replacing at some point. Have to say that (touch wood) all things considered it seems to me that lots is known about hearts and (again touch wood) they seem v good at fixing them so if you are going to have something go wrong it could be worse!
Hope you’re ok CorporalNobbyNobbs, I find TP a huge comfort at times of trouble
Hope this helps a bit OP, feel free to message if you have questions. STARS and Arrhythmia Alliance might also be worth a look

I can't thank you all enough for taking the time to post - this is all so helpful. I can't say I haven't had a very fitful sleep but knowing that there are women out there who are living so well with this really helps.

The health anxiety has completely changed my life. I barely recognise myself now. Linked to the other issues - PTSD etc - it means that even the thought of a cannula or walking into a hospital for someone else can be horrendous. I'm hugely embarrassed by it actually.

I really appreciate that no one has just told me to get a grip! Thank you all so much

Have a lovely Christmas OP. And hopefully a peaceful one too!

I have health anxiety and PTSD too OP but not so much about procedures themselves. But I can see why it’s scary. As ICDgirl says though they seem to be excellent at fixing hearts these days! Hope you get good news from your tests.

ICDgirl I had a pacemaker too first as they didn’t know what was wrong with me only I had third degree heart block as well as AF and SVT. I had ablation for the AF too and seems to have worked and then they swapped the PM for an ICD after they did genetic testing and realised I was at risk of sudden cardiac death. Now I have the ICD I feel reassured that it will (hopefully) save me should I need it which makes me feel a lot better than before!

and yes TP is very comforting. I sort of met him once - I was at a talk he gave and stood near him at the drinks reception afterwards. I was too nervous to say anything (all I could think of to say was ‘nice hat’ 😂) so I just sort of nodded hello at him. He seemed very nice though!

@ICDgirl

I had a battery replacement after about 8 years and then a full device replacement about 2 years ago as there was an issue with the wires but, like Nobby says, the procedure isn’t too bad and I am pretty squeamish as well. They did put the first one in under general but everything else has been under local with sedation. It’s such a routine op, (v similar to a pacemaker insertion that they do all the time) so I’ve always felt in very capable hands. I’ve got a fancy new one now that means you don’t have to be as careful around magnets and will probably last a lot longer.

Sorry to jump into the thread, but I noticed your comment about magnets. I often see warnings about induction hobs, and am wary of getting one for this reason. My son in law has an internal defibrillator fitted and I wouldn't want to make my kitchen out of bounds for him. His device is all singing all dancing and remotely monitored, so hope advice is changing now.

Stuffthisstuff it is obviously a great worry but hopefully you are a little reassured by other posters. It has been a very positive procedure for our family, previously my daughter was so anxious about her DH. I imagine your family will be relieved of a lot of worry too.

All the best

I think I've missed who TP is!

Colonel - health anxiety is so difficult isn't it? I feel like I just need to get over myself, but I also know that it's linked to other things that have gone on in my life. It's definitely getting worse as I get older.

You've all been so kind and not told me I'm ridiculous - hope you have a lovely Xmas and I'll no doubt be posting back here again after a few days to bother you all!

#Teaandstrumpets# - actually, there hasn't been previous worry from anyone as it was only found two years ago by accident and the GP was quite dismissive. When I got it rechecked yesterday, again it wasn't actually related to that which I think is where some of the shock has come from. I've only told my DP but I now see it's possibly genetic - does that mean my kids should get checked asap (they're all grown up or almost)?

Messed up bolding there TeaandStrumpets

Stuffthisstuff oh dear I bet that's knocked you for six. I am glad someone is paying attention now. In my son in law's case he has regular check ups since childhood (hole in heart repair) In between he consulted his local GP about the odd "funny turn" he was having. The GP in his wisdom diagnosed migraines (!) When son in law next saw his consultant they ordered an internal monitor. These episodes were very irregular, so nothing happened for months. One day his heart stopped briefly when he was walking home from work, and he hit the deck. When he came round he rang the consultant and was admitted urgently. Op was no bother at all, it is a miracle to us!

@Stuffthisstuff

I think I've missed who TP is!

Colonel - health anxiety is so difficult isn't it? I feel like I just need to get over myself, but I also know that it's linked to other things that have gone on in my life. It's definitely getting worse as I get older.

You've all been so kind and not told me I'm ridiculous - hope you have a lovely Xmas and I'll no doubt be posting back here again after a few days to bother you all!

Sorry OP, it’s Terry Pratchett, reference to Corporals user name! I’m v jealous Corporal met him and think nice hat would be just the right thing to say. Tea ** I’ve completely missed the memo on induction hobs! My mum has one and my sister and it’s never occurred to me and I’ve spent a lot of time in their kitchens. I would ask your son in law to check with his pacing clinic but if it’s a new one like mine I’m fairly sure it would be fine, I had an MRI with mine in last year (they did turn it off). Stuff, my kids were checked for a prolapsed valve when they were v small because they know that’s genetic and I’m on the list to have them checked through Cardiac Risk in the Young who run screening clinics (they are still early teens) for any arrhythmia but no one seems very concerned about it. Completely sympathise about the anxiety, I’ve been there and it’s difficult to live with. It did make me smile when I saw your comment about cannulas, I hate having them in, it’s the worst bit for me but I think once that’s done they can give me all the lovely drugs (sedatives work wonders)

My partner has had one for years, he's on his third device now, and each one gets smaller and lasts longer. He lost two of his brothers in their 40s to a genetic condition he also has. Obviously he doesn't like having it, but the impact on his life is minimal, and well worth the reassurance it provides. I hope it's good news for you OP.

ICDgirl thank you! That is excellent advice, I will ask him to check. He and DD love to cook when they come to stay with us