The latest in my CRT journey - British Heart Fou...

British Heart Foundation

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The latest in my CRT journey

Heartlady1
Heartlady1

Hi all.... having been through my second op to get this pesky lead in place... which has failed... I have been in touch with PALS as I did feel it was in part due to lack of after care following the op ..... as well as me wriggling around in the op due to me coming round from the sedation. Mentally as well as physically it's been tough... but now I am back and now 're focused.

So firstly I know that CRT works for me and gives me a better quality of life... as well as stopping deteoriarisation of my heart. It worked really well for those 7 months.

So now having got PALS involved I now have the team talking to me and listening to me and allowing me to get involved in the plan

I went for screening for a new type of leaflets device WICS ... however my ribs are in the wrong place and my lungs are too healthy and would get in the way! So let me say I am taking this as a positive... and had decided that this was not for me due to the very limited battery life.

So now looking at a couple of options with my surgeon... one if which is have another go at putting in this pesky lead... however I want some input into my post op care ... to make sure the pesky thing stays in!!

I am awaiting my surgeons response and we will work through together what is the best way forward... and this will all help me to feel more confident if we elect for another op, and that my after op care will ensure we get the best chance of keeping the lead in place.

It does seem madness when the cost of doing these ops are negated by the rushing patients out too early .... which pushes the costs up when we have to do it all again and again . So this time let's just hope it's third time lucky..... watch this space.....

7 Replies
oldestnewest

So sorry you’ve had such a rough time. Hopefully they’ll get it sorted out properly for you this time.

Wendy

Heartlady1
Heartlady1 in reply to Fredders

Thanks Wendy.... but it won't get me down ( ok well it did lol but I am back up again)

Having the ability to chat by email to my surgeon is amazing... we are now on first name terms.. and I genuinely feel it helps them to see me as a real person .... with good... and not so good suggestions. But I also get a much better insight into their thoughts and what could be achieved.

We have now decided to go and redo the op ... and I do this time feel more confident that we will all be giving it our best shot.... that's all a girl can ask for 😁

Let's do this thing.... now just waiting for the next op date x

Fredders
Fredders in reply to Heartlady1

Good to hear you’re being so positive. Keep us posted.

Wendy x

Sorry you are going through this. Really pleased you are getting support now albeit a bit late. Stay strong and keep fighting for what you want. Take care and look after yourself. Zena

Heartlady1
Heartlady1 in reply to Zena166

Thanks Zena... I must certainly will. They won't take me home in an ambulance as I requested, to give me further protection... so I am going to hire a private one 😀 sod the expense. It's only money x

Zena166
Zena166 in reply to Heartlady1

Absolutely may as well spend it on something that you need(as well as something you want in due course!) take care. Zx

Hi Jo.... all the best in your upcoming op. Please don't view my issues as the norm.... and even though it has not worked as yet.... I am prepared to try again because they are amazing devices that really do help you feel much better and protect the heart.

And then we can get on with living our lives 😀 the technology to allow us to do this is amazing....do let us know how it goes..... and one bit of great advise to me was.... after your op take the pain killers.... don't take the pain. I must say as well that each time I have had this the recovery period has been very quick. I am 2 weeks post op and I amvgoimg back to work next week ( starting part time) but that's really good going don't you think?

All the best

Karen

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