Few issues

[Nomis21]

Hi, ongoing issues, HF (EF 40%), LVSD, AF.Total heart block, 2 lead Pacemaker dependant due to AV node ablation with no rate response, set at 70bpm (HR doesn't go above) had rate response activated but made AF worse so back to 70bpm.

Seen consultant yesterday and looking at upgrading PM to CRT (3 lead) and cardioversion also stated that cardiomyopathy could be an instigator.

Had bloods taken but not sure what for, in permanent AF.

Have symptoms of breathless, tiredness, chest pain, can't exert myself like walking up inclines, stairs etc dizziness lightheaded when getting up from sitting position, lethargic, weakness in lower half, bloated, nausea, no swelling or oedema in lower half, just zonked really also can feel pressure in my head and ears, heart thumps heavy most of the time, can't concentrate, memory is worse than ever and relationship is taking a hit!

Struggle now doing daily activities, no interest in being active, works a chore (working from home most of the time but even struggling to stay awake throughout my working hours) sometimes take laptop to bed but soon fall asleep!

On ramipril, Dapagliflozin, Bisoprolol, apixabam.

53 yrs old and feel like the rust well and truly set in.

Anyone else in a similar position that can share their journey?

Thanks

[CDreamer]

So sorry you are feeling so poorly and so young, must be very difficult for you.

I had a 3 lead Re-synchronisation pacemaker fitted in 2018 (CRT) in preparation for AV node ablation. It worked so well that I cancelled the AV node ablation which my understanding of your post you have had? In my case my AF burden is now averaging about 2%. I had a revision and as soon as the leads removed, straight back into AF, soon as leads reattached, NSR so for me CRT was an outstanding success but I seem to be one of the very few posting here with that sort of success story.

In my case I was headed toward HF but EF around 50% and my specialist took the view let’e treat before I get there.

What I learned was that the pacemaker will take over pacing of your heart and more importantly, the synchronisation of your ventricles as with 2 lead PM the ventricles will tend to go out of sync and contribute to symptoms. You may very well continue to be in AF but because your heart is paced and your ventricles work in sync your heart rate will be better controlled and therefore symptoms should decrease.

Unfortunately if there is cardiomyopathy that could be a completely different scenario and not sure CRT would help. Hope you get some answers.

[Nomis21 in reply to CDreamer]

Hi CDreamer, fingers crossed the 3rd lead helps me, just waiting for clarification on the next step from the EP.He did say that a CRT should help in my situation.

Many thanks for the reply and useful info.

[Buffafly]

Most of those medications would account for your symptoms - it is possible you don’t really need them, or maybe need less. It is very difficult to distinguish between effects and side effects if the medication doesn’t seem to make you feel better. Sometimes when you complain doctors just keep adding stuff. You might try putting a similar post on the BHF forum where that combo might be more common ❤️‍🩹

[Nomis21 in reply to Buffafly]

Thanks Buffafly, Often thought it may be the meds, all prescribed by HF clinic apart from the Apixabam whic was the gp but after chatting to my EP a few days ago he said that the meds seemed appropriate in my case.

Wish I didn't have to take but that's what there telling me I need so I follow there advice.

Many thanks for the reply