British Heart Foundation
4,185 members2,723 posts

A Sad Day.... and What To Do Next

Hi all

So as some of you know I had a CRTD fitted in September. I felt marvellous after it and quickly focussed on moving on with my life.

Move forward to beg of March and ( due to my leads being put in too tightly.. Dr admitted this) one of the leads... left ventricle.... fell out.

Back to the operating table ( last Thursday)to have another lead inserted. Was told this would be a new type of lead.... with a hook attachment... which shoukd stay in better. So 3 days after op it has come out!!! And I have been super cautious.

Was told at A & E of this today.

Now if they try again ..... this is yet more chance of getting an infection.... which could lead to open heart surgery!

As I felt the last op they said any future op would be under General anaesthetic.. .. another rid.

And I could go through the whole thing for it to just fall out again!!!!

OR I could get that lead switched off get the other lead to only pace when I get down to 40 beats a minute ( and this would effectively then become an ICD device with the added protection of the defibrillator.

Pros: no further surgery as we could just fine tune my device

Allows me to get on with life and I will be protected if my heart speeds up or goes to slow

Will negate any worries of further complications and would ensure no open heart surgery

Cons

An ICD offers protection but would not halt any further deteriorisation. Although this may not deteriorate at any great speed.

I will not have the same energy levels as I have with the CRT and would therefore recognise I would get a little more tired (although I was not struggling with life without it) just take the stairs a little slower.

Accept maybe a change in lifestyle to protect my heart to avoid deteriorisation. ( slow down a bit)

I really am struggling with this one. But I am so scared of keep going with further ops that don't work...

I am considering telling them I don't want any further treatment and let's fine tune my device to be an ICD device ..... but will I regret it?

The Dr at the hospital.. . When I put this to him... was impressed I had worked out how to reconfigure my current device to become an ICD and he did say " we are making you ill... I think this sounds like a better option than another op" but when he rang my surgeon he just wants to whip.me in for another go!

I am emotionally drained and maybe an ICD gives me what I need and stops me being ill due to all this invasive treatment. Help what do others think?

7 Replies
oldestnewest

I am so very sorry to hear of these complications and the difficult decision you are now faced with. I would allow yourself as much time as you can (I don’t know how you are now in your interim state) to make your decision. I only joined this site recently and have seen you so strong and positive that whatever choice you make you will maximise. The mistake can be thinking that there is a ‘right’ choice whereas once you’ve gone ahead with one you never will know how the other will have turned out anyway. It sounds trite but whatever you choose will be right for you as you will live well whatever happens because that gift is in you.

There is information and evidence that can be scant when we find ourselves on a lonely untrod path. It can be better to consider who you trust and what your risk appetite is. Some people would rather reach for the moon but maybe fail and others can see the beauty in a calmer life with less risk. And that is why it is your decision alone I only know I trust you to make it. You’re strong you embrace life and happiness. Be still and listen to your inner voice and the decision will come to you.

Love and hugs to you - I’ve had to make some difficult treatment choices alone recently I do understand but ultimately it was my choice and I only listened to me and my consultant who I trust with my life.

Take care my friend.

Jo

Xx

2 likes
Reply

Heartlady, you are a strong, brave individual, I wish you the very best whatever you decide. I feel moved by HappyJo's lovely, sincere, heart-felt comments and wholeheartedly agree with her/his words. God bless you x

1 like
Reply

Well that’s an Easter Egg you didn’t need. Sorry it didn’t go to plan, you must feel totally gutted, but you are a strong and wise lady, you will make the decision that’s best for you. Taking life a little slower isn’t that bad, I’ve adjusted and done a bit of fine tuning, I’ve stopped feeling guilty , if I can’t do it today thankfully I have tomorrow . Just listen to yourself , subconsciously you will find the right answer to your question. Wish I could wave a magic wand. Take care Kaz 💖❤️💕

Reply

Thank you all for your comments and your support. It is such a hard decision. Happy Jo thakk you for yoir beautiful email..... made me cry ( in a nice way x) and the thing with me is I always want to reach for the moon lol.

I think you are totally right in that I have to give myself time... and the good news is we can make my device into an ICD for now and then change it back to a CRTD in the future. The only issue will be if they can't operate on my left side and need to reoperate on the right side. At which point I think I will say no. But if we can 're operate on the left side I may say let's try one last time ( third time lucky and all that) but just need some time away from the operating table for now.

I have a social life to be getting on with don't they know 😀.

But seriously I think I do need time to think and make the right decision for me.

And thank you again it so helps me mentally being on here and know that you all understand these dilemmas.... and i am not on my own. Thank you from the bottom of my heart ♥ x my wonky tonky heart x

3 likes
Reply

Hi Heartlady,

really sorry to hear about this latest setback. For what its worth I think you are making the right decision to wait before making the choice.

Take care

Mark

1 like
Reply

Keep your chin up, thinking of you with love, Margaret xxx

1 like
Reply

Sorry to hear about your latest set back, I know you were hoping Kate would be more reliable than Kurt !

As others have said you need to take time and think about what you want to do next, these are big decisions that we are asked to make and I don't always think it helps that Drs give us the choice but are sometimes reluctant to guide us in the way they did in the past.

In my own case my 1st surgeon told me I needed the operation and I felt confident to go ahead, now 11yrs later a different surgeon says he recommends I have a second operation but in his words " he will not be dragging me in ".

Take things easy and I am sure you will make the right decision for you.

Best wishes

Reply

You may also like...