persistent AF since July 2023

[Lilylui]

I had AF after first vaxx 2021 it was P-AF then went persistent in July 2023. I am under the EP team from Birmingham who come to Hereford. I also saw EP privately before going on nhs, he gave flecanide as a pip. It didn’t work, I have been seen by his team twice each time given different meds, and different advice, last time in January 2024 they said they would see me in 3 months and try to cardiovert see if it held then arrange ablation. Never got the appointment so rang to be told earliest appointment is May2025 ! My heart rate goes to about 170 when walking ect and now comes down sometimes to 45 my hr used to be or AF 70’s

I am only on Apixaban as gp took me off verapamil said it wasn’t great for me.

I have had a monitor for 2 weeks and confirms I am 24/7 .

I have gone really breathless had a scan for heart failure a few months ago via gp and was 51% but breathing definitely worse since then. Don’t know what to do or anything natural I can take ? I am taking hawthorn which helps a bit, cardiac nurse is trying to see what else I can do but not heard back for 4 months, just feel forgotten

Sorry long post

Can I live ok like this ? Do others live ok I just carry on as if I don’t have it.

[Cavalierrubie]

You definitely need more help than you are getting. I would change my EP and find one that could help me more. Don’t think you should have to live like this. Awful situation for you.

[Lilylui in reply to Cavalierrubie]

It is but don’t have anywhere else to go we don’t get choices here where I am

[Cavalierrubie in reply to Lilylui]

Sorry to hear that. If it was me feeling like you do, l would take myself off to AE and ask for the help you are not getting. I wish you well, Take care.

[mjames1]

Yes, get another ep as soon as possible. Not only is your rate not controlled, which can cause damage to your heart, but the longer you remain out of rhythm the harder it will be to get back in.

Jim

[javo123j]

The treatment you're getting doesn't seem too good. I also went in to permanent AFIB in July 2023. After seeing EP I was given cardioversion in October that year but it didn't last more than a week. Since then. I've been on bisoprol which controls my rate so much so that I can walk and exercise without being too breathless. I also have heart failure and my ejection fraction in much worse than yours yet I am living a normal life. Your doctor should be able to sort you out so no more damage can be done to the heart.

Just noticed latest post and doctor says that my HF was probably caused by AF being untreated.

[Slidingdoors99 in reply to javo123j]

Yes! In my opinion, getting back to NSR asap is really important.

[mav7]

I also saw EP privately before going on nhs

Can I live ok like this ? Do others live ok I just carry on as if I don’t have it.

If not to affect your budget, would consider again going private.

Yes, you can live ok with persistent/permanent afib but needs to be controlled with proper medication/therapy. And consider in consult with your medical professionals possible avenues to return to NSR.

[Hidden]

As javo123j suggested, your GP should in my opinion be much more pro-active in managing your medication and advocating for you with secondary care services.

Perhaps consider a second opinion from a different GP at the same practice?

[Lilylui in reply to Hidden]

Sadly we only have the one gp and locums gp. One puts me on the next takes me off !

[Slidingdoors99]

Hi.

I’m sure that many people will reply to you, but I think that you’re not getting the right care!

For me, in Taunton I was in persistent AFib for three months before my first cardioversion. It only held for three days, but it meant that I was a candidate for an ablation.

I have had two now.

You shouldn’t have to carry on like this.

Please tell your medical team that you understand that remodelling of your heart can occur the longer that you’re in AFib.

No wonder you feel breathless and poorly and worried.

Best of luck. Xx

[Lilylui in reply to Slidingdoors99]

Can’t get to see them until May next year by them will be nearly 2 yrs in persistent AF 😟

[Slidingdoors99 in reply to Lilylui]

This seems ridiculous to me. Can you afford to go private Lilylui? Xxx❤️‍🩹

[Lilylui in reply to Slidingdoors99]

No only on the basic pension, x