Pace and Ablate

[CDreamer]

Well I had hoped that it would have been all done and dusted by now - but NO! The insurance company is driving both my EP, his secretary and myself round the pole and I rather suspect they will deny the bi-ventricular device. But they have OK’d the AV node ablation - which of course I can’t have - until after the pacemaker. I am going for an echocardiogram tomorrow as evidently I need to be in heart failure with an ejection fraction of less than 30% to qualify for bi-ventricular. I somehow don’t think I am there yet!

EP is going above and beyond to fight my corner but things have ground to a stalemate. I am on the NHS waiting list but EP wanted to ensure I had an anaethetist present - just in case of Myasthenic crisis during procedure and availability on NHS is restricted for non urgent patients.

Anyway I am not doing much this week as I can’t stop coughing - Pneumonitis (inflammation of lung) - Olbas and steam and temporarily I have slightly reduced my immune suppressants in the hope my immune system will fight it off.

Beautiful day so I think gentle walk by the sea before it gets too hot - have a good BH Monday everyone.

[stormcloud]

This must be worrying and frustrating for you. I am due to gave the same thing.Told I would have a dual lead pacemaker and then AV node ablation some weeks later.I am still very unsure about it.As I understand it the AF will still be there but I will no longer need to take rate control medication.Surely this means that the damage being done to the heart by not being rate controlled is going to happen more quickly? Also, if less blood is reaching the ventricles during an episode of AF how does having more efficient pumping of the ventricles help?

[CDreamer in reply to stormcloud]

It is a huge step and one I have been putting off for some time and of course as soon I made the decision - my heart has been relatively stable.

As far as I understand - yes AF will still happen in the Atria but because the AV node is knocked out then the ventricles are isolated and paced by the pacemaker - the heart’s efficiency is still within tolerances and thus reduces symptoms such as breathlessness and fatigue.

As I haven’t ever really taken rate control drugs I’ve never been concerned about high rates - I can function ok up to about 130-150 but it rarely now goes up there anyway.

My understanding is that high atria rate is not an issue, whereas a high ventricular rate could be.

I think we both may need more information.

Best wishes

[stormcloud in reply to CDreamer]

Thank you for replying.

I will be seeing my EP next week and hope to get answers to all my questions.

Glad you enjoyed your walk by the sea.

[pottypete1]

That all sounds very complex and stressful.

I assume that if you can get it done on the NHS your EP can arrange an anaesthetist if that is what is required.

I hope you feel better soon. I think your idea of a gentle walk by the sea will be just what the doctor ordered. Wear a hat and don’t get burnt.

Pete

[CDreamer in reply to pottypete1]

Thanks.

I can BUT EP only has access to anaethetist on a Monday and if there are any urgent cases I would get bumped.

Walk was lovely, I got there before the hoards, heavy sea mist along the coast but absolutely lovely.

[Hidden]

Sorry to hear this CD, let’s hope the situation gets quickly resolved so that you can get the treatment you need and deserve......enjoy that stroll....lots of sun cream, floppy hat and a bottle of water....👍😉🌞

[Finvola]

I’m sorry you are being put through all this extra stress CD - not something you need at all.

It amazes me that someone who obviously knows nothing about pace and ablate has decided you can have your AV node ablated but won’t pay for the pacemaker. Sounds like a real beancounter to me. No wonder your EP is frustrated.

I hope you can get the whole thing resolved somehow and quickly. In the meantime, some cleansing sea air and lapping waves sound just right.

[Jollies]

So sorry to read this. All that extra stress. Off to the sea myself today, a tour of beautiful islandmagee , maybe followed by a cheeky ice cream x

[Hidden]

When I read your posts CD I realise I don't have any problems at all.

I do hope you get things sorted out soon. Enjoy your walk on this beautiful day . Hope you will have some good news to relay shortly. It all seems to be a post code lottery as far as NHS is concerned.

Best wishes

Sandra

[CDreamer in reply to Hidden]

Thanks Sandra - my cough has softened - in more ways than one! x

[falah12345]

Hi CDreamer

I hope this will be sorted soon and you will get the procedure done successfully .

Mindfulness is great and one particular exercise I found it quite effective

(progressive muscle relaxation)

All the best

[meadfoot]

Bless you so annoying for you. Insurance companies quick to take the money and reticent to give go ahead when needed, typical. Hope a walk by the sea cheers you. Good luck with getting things moving.

[JaneFinn]

Oh CDreamer I’m so sorry you’re having all this frustration and stress 😕

Looking back, I see that I missed your original post about the decision to pace and ablate - I’m very sorry your symptoms have been getting worse

I’m so glad you have an EP who is doing his best for you - that at least inspires confidence in amongst the rest of the rubbish stuff. Hoping it will be sorted the best best way really soon and that in the meantime you shake off your pneumonitis.

And hope the walk was therapeutic! (And not too hot!) I’m currently roasting on holiday in France - but (something we all empathise with) just grateful for my heartbeat staying steady while I’m away from home!

Sending love and hugs, J x

[wilsond]

Hope you get a positive outcome soon!best wishes

[irene75359]

So unfair to have to jump through hoops to get treatment that you have, in effect, already paid for. Fingers crossed it will all work out soon.

[Zezee]

Hi CD sorry to hear you have had this delay trust matters can be resolved soon ..fingers crossed you will be able to be done within NHS await to hear all is well and you have been done ..particularly after coming to terms to having it done ...no light decision ..hugs all the best Celia x

[cbsrbpm]

Sorry to hear your having so much trouble CD my past experience with private insurance is not good they would not pay for me to see anyone about my arythmia as it was an ongoing disease. 😡 I hope you get it resolved soon you can do with some luck. Enjoy the sunshine while we have it. ☀️☀️

Brenda🐝