Af 12 mth waiting list 😒

[Van28]

Hi I’ve had 2 cardioversion & 20 mths ago an ablation. 2 days ago went back into persistent AF again out of no where. Luckily Was due to have a phone appt with consultant day after. He says I’m to have another cardio version followed by 2nd ablation. Apparently waiting list is 12 mths cause of covid. I feel like I’ve no energy & bit breathless, takes me till after 2pm to feel like I can do anything(slowly). Can’t tolerate flecanide or drondarone. Rates go from 98/89 to 96/63 & everything in between. I know others have them a lot higher, mine previously before Ablation has been through the roof. Don’t know if I can wait 12mths & am thinking of asking if I can go private, even though it goes against my conscience. Sorry for waffling its just good to be able to put everything down & folk know what I’m talking about. 😏

[Hidden]

Try ‘n be patient, cardioversion might be soon and with any luck, it could last a while.....🤞🤞

[Van28 in reply to Hidden]

🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻

[Jalia]

You'll probably feel much better after another cardioversion so don't rush into paying for an ablation. Unless you have deep pockets of course ! You will be looking at circa 15k.....I've been waiting over12 months for ablation no 4 and had cardioversion no 21 in January this year. The only anti arrhythmia drug that works for me...in a fashion....is Disopyramide. Worth asking about. Its been around a long time but not often prescribed.

[Van28 in reply to Jalia]

Thanks. I meant I was thinking of going private for the cardioversion not the Ablation. My pockets are certainly not that deep. 😀

[Jalia in reply to Van28]

Can't believe you have to wait 12 months for cardioversion?!! Anyway you could pay quite a substantial amount and then find it only lasts a few days ....Live plug socket springs to mind ( only joking... 😉😂 )

Heres hoping the wait is not too long.

[Hidden in reply to Jalia]

I think he meant the ablation wait is 12 munffs😉

[Van28 in reply to Hidden]

Just said “you need to go on list for cardioversion then ablation unfortunately waiting time is 12 mths at the moment” due to covid & slipping back all the time.

[Hidden in reply to Van28]

Sorry Van, 12 month for CV or ablation or both 😳

[Van28 in reply to Hidden]

🤷🏼‍♀️

[Hidden in reply to Van28]

All I can say is 12 months is not unusual these days for an ablation but seems way to long for a CV. Is there any way you can seek clarification, maybe the consultants secretary could help......hope you get some answers soon.

[Van28 in reply to Hidden]

Thank you

[Jalia]

Great minds.........Flapjack!!

[Hidden]

Very few will wait longer than 3 months for a cardioversion. Can you get yourself on the cancellation list? Can you get your GP to find somewhere with a shorter wait time for the ablation?Your heart rate doesn’t sound too bad, do you need to lose weight and take some gentle exercise? Are you taking an anticoagulant and some magnesium?

[Belle11 in reply to Hidden]

I waited 9 months for my cardioversion - from April 19 until January 20.

[Hidden in reply to Belle11]

Not good. Did your GP try to intervene on your behalf?

[Belle11 in reply to Hidden]

I didn't ask my GP - see my reply to Van below for more details about how every step along the way was extremely slow, quite possibly to a large extent because of a shortage of cardiologists at the hospital at the time. I kept thinking things would happen, only to be delayed again. I didn't find this group until around the time of my cardioversion, so had no idea what was a normal time to wait.

[Van28 in reply to Belle11]

Gosh. What area of the country are you in?

[Belle11 in reply to Van28]

Northampton. I believe a cardiologist had left and not been replaced at the time so they were overstretched. It was complicated by my being away on holiday when the letter arrived giving me an appt for an echocardiogram (for 6 weeks after I spent a day in A&E when I went into rapid AF) - we arrived home the day after I was to have had it, and I was sent to the back of the queue to wait another 6 weeks - not knowing about the appointment was no excuse! Then it was at least 8 weeks after the echo that the doctor's letter reporting on it arrived (possibly triggered by my writing to the consultant to wonder what had happened, or may have been because she was doing 2 people's work), another 6 weeks before an outpatient appt, then I got an appt for a cardioversion 6 weeks after that, for New Year's Eve - that clinic was cancelled, then 2 more cancelled appts before finally being cardioverted in mid January last year on a Sunday in a special extra clinic. And as far as I know, I've stayed in NSR ever since so far.

I hadn't found this group then and didn't know that this was so abnormally long. And because I felt so debilitated, my thinking had veered to this being what happened when you were a bit older (coming up for 70 at diagnosis) and that perhaps I would be expected to live with it. There were quite a few people having cardioversions that day who hadn't been in AF for nearly as long as me - being younger seemed likely to help, but what other factors I don't know.

So I'm sure it will be worthwhile asking lots of questions and making sure you are on their radar. I hope you get your cardioversion much sooner, even if the ablation takes longer.

[Van28 in reply to Belle11]

Thanks Belle11. My 2nd cardioversion was in an extra wk end clinic so maybe they will start doing extra again soon. 🤞🏻

[Van28 in reply to Hidden]

I am trying to lose some weight but it’s difficult as I’m on a migraine tablet that is also given to help people put on weight. Exercise is hard as I’ve also had a full hip replacement cancelled twice, once because of being in af & waiting for an ablation & again last yr because of covid. Looks like that will be on hold for a while. I’ve been on apixaban since my first af but not magnesium.

[etheral]

Hi, not too familiar with the protocols in the UK. If you are in any acute distress, would you not be able to present to a+e where presumably they could cardiovert you to stabilize the problem?

[CDreamer in reply to etheral]

You might - if you presented to a large hospital with a good Cariology Consultant in the department but in my experience, no! A&E is for Accident & Emergency so mostly if you present to A&E they will monitor you for life threatening arrythmias (although I’ve sat in A&E in fast AF for 9 hours without so much as pulse being taken because they were so busy). After triage they would then often give you IV drip & hook you up to a monitor to see if you self converted but that’s usually it. AF is considered Out Patient Clinic matter not an emergency.

The trouble is the pressure on the NHS with lack of resources so better to be very ill with a life threatening condition - then you will receive outstanding treatment.

I would say it all depends upon the hospital and the expertise that happened to be in the department or the hospital at the time and what day it is - ie is there a Cardiologist/EP available? The number of patients waiting and availability of qualified staff to give you CV.

[Jalia in reply to CDreamer]

I think I must be very lucky where I live on the south east coast . My AF is always fast and persistent and resistant to drug treatment. Consequently I have always been referred to A&E where I have had exemplary treatment involving either cardioversion in Resus or admission and dccv in theatre. Total of 21 dccvs over the past 28 years.

[Van28 in reply to Jalia]

Jalia that is really good treatment you are so lucky in that respect

[Van28 in reply to CDreamer]

I had the same experience as you CDreamer for 7 hrs on a trolley in a corridor. When they sent me home I could hardly walk I was so breathless. Ended up back in ae following day & given fluids, back again 3 days later when I was lucky to see an actual heart man.

[Jajarunner]

I was forced to go private last year. The EP I spoke to worked at the big heart hospital where I was due to have my ablation. He was horrified by the state I was in and got my status changed to urgent. Then I was back into the NHS for cardioversion (though I had to wait for the anticoagulant to take effect) followed by nhs ablation a month later. Best £250 I ever spent. But it did test my morals.

[Van28 in reply to Jajarunner]

Glad you got sorted Jajarunner. Was the £250 just for consultation? My ER is one of the main Drs at the fairly local specialist heart hospital. Luckily it was him I spoke to on the phone 2 days after going back into af, if it had been before then I would have had to go back through my go again so thankful for that

[Jajarunner in reply to Van28]

Just the consultation I'm afraid. I think cardioversion us about £1500 and ablation£15000!Glad I didn't have to pay as I've just had another cardioversion and now need second ablation!!!!!!

[Van28 in reply to Jajarunner]

That’s the problem if Af keeps coming back you just throwing good money after bad going private 😏 Hope you arnt waiting too long. 🤞🏻🤞🏻

[Desanthony]

You may be able to get the CV pretty soon - if not going privately for a CV might be an idea - a lot cheaper too. Last time I asked about this it was under £1500.00 where an ablation cost £9000.00 this was nearly 4 years ago now. I didn't go the private route because the NHS CV came along within about 2 months.

[Belle11]

I waited 9 months for my cardioversion, and that was before Covid. I would consider going private for another if I was told I had to wait that long again as my AF was debilitating. Definitely worth clarifying whether the 12 month wait is for the cardioversion or the ablation.

[Jumper]

I can empathise as I have been told I will have to wait 9 months for an ablation. I was informed that ablation costs around £20,000 so not an option. Caught between devil and deep blue sea and beginning to get worn down.

[Barb1]

I have been waiting for my 5th ablation for over 12 months now and that's private. I don't know how much longer I can put up with the AF, as it's persistent with high heart rate. Feeling very down, so I can relate to you.

[Van28 in reply to Barb1]

Thanks Barb1. Wow can’t believe it’s so long privately. 😳. Although my rates arnt high at mo they are all over the place & persistent too, I feel wiped out with no energy. Hope you get it sooner.

[Lucymoo]

Sorry to disappoint you, but I’ve just been advised that my ablation used to be a 12 month wait is even longer now. I’ve been on the list 10 months now and no idea how much longer I may be waiting and in AF most days. Fingers crossed yours is 12 months

[Van28 in reply to Lucymoo]

Thanks lucymoo but I’m not holding my breath it will be. I waited over 12mths fir my first ablation & that was pre covid. Good luck with yours