what might happen next please?

[Rhiannonimity1]

I have been in SR for 8 months. Now I have been on the waiting list for an ablation for over 2 years. Apparently the list is now many years long. I went into AF a week ago and the chemical cardioversion hasn’t worked. I am being referred back to my EP but the waiting list for him is 3 months. If I am in persistent AF, will they still do the ablation? How long do I have before I can’t have an ablation any more? Should I go private to get the ablation before I am persistent too long? There is also stil apparently nothing I can do to get ACs. I am chadsvasc score 1. That frightens me.

[BobD Volunteer]

Some people pay for a private EP visit to hopefully get slightly further up the waiting list.

Regarding anticoagulation I think this may depend on what your score of 1 actually is? If just for being female there is some doubt as to the validity of that. Do you have other co- morbidities?

[Rhiannonimity1 in reply to BobD]

hello Bob. Thank you. No, I score 1 for being female.

[BobD Volunteer in reply to Rhiannonimity1]

Then in the opinion of lots of specialists you have a score of zero. The 1 for being female only starts when you have a score. When you reach 65 you score becomes 1 +1 for female.

[Singwell in reply to BobD]

Not many advantages to being female!

[Ducky2003 in reply to Singwell]

Can't think of any at the moment 😄.

[Jalia]

Is there a reason why you can't have electrical cardioversion ?

[Ducky2003 in reply to Jalia]

That was crossing my mind.🤔

[Rhiannonimity1]

hi Jalia. I have had 3 successful electrocardiographs 3-4 yrs ago. They have said I can’t have more as they might damage my heart.

[BobD Volunteer in reply to Rhiannonimity1]

" They" are talking twaddle. Loads of people have many DCCVs with no problems. Unless you have another heart related problem that you haven't mentioned I would seek a second opinion.

[Rhiannonimity1 in reply to BobD]

thanks Bob. That is good to know.

[Ducky2003 in reply to Rhiannonimity1]

I've had about 8 cardioversions and as far as I'm aware, there's no limit for them, unless you have other cardiac issues.

[Rhiannonimity1 in reply to Ducky2003]

thank you Ducky. I’m going to take this up with them.

[Jalia in reply to Rhiannonimity1]

I assume then that something else is going on as I've had 23 dccvs.

[Rhiannonimity1 in reply to Jalia]

I am obese. Maybe that is why. Otherwise me and heart quite healthy.

[Ducky2003 in reply to Rhiannonimity1]

At least 3 of mine were done when I weighed about 3 stone heavier.😊

[Ppiman]

You are anxious and no surprise. From what I’ve experienced and read, waiting lists vary around the country and many cancellations come up such that some get in really quickly.

I would put out of your mind that you will deteriorate, or not be able to have an ablation. Your heart itself is safe. If your symptoms are making you feel ill, then I would seek help from your GP. A private appointment with a cardiologist, EP trained or not, will cost about £200 (and a UK cardiologist will recommend an ablation if need be since he or she works in a team with EPs), plus £60 for an ECG. If further tests are needed, they will be on top (echo is about £650; MRI about £1200).

[Rosebank100 in reply to Ppiman]

I'm on the waiting list for an ablation and have been told 4 to 6 months. I enquired about going private, still had a 2 month waiting list and wanted me to pay £12k!!

[Jalia in reply to Rosebank100]

Waiting list of just 4/6 months sounds pretty good to me. Also the 12k you mentioned. ...used to be around the 15k mark. I would be very reluctant to pay for ablation out of my own pocket as results may not last long. I know that, having had 4 already ! If you have very deep pockets or health insurance then lucky you !

[Gumbie_Cat in reply to Jalia]

I’m thinking my first one hasn’t worked right now - been in AF constantly since 2 days afterwards, and losing hope tbh. If I had paid thousands of pounds then I would be feeling pretty fed up. Though I know we often need more than one anyway. On the other hand, perhaps the bank statement would provide a shock back into NSR?

[Ppiman in reply to Rosebank100]

That sounds about right. In the USA, I gather, it’s several multiples of that.

Steve

[pusillanimous in reply to Ppiman]

My account for a check up (my cardiologist is Edinburgh trained) is much less in South Africa, Consultation,2 dimensional examination. Examination plus doppler, and ECG came to R3000 ( medical aid paid some) - but divide 3000 by 20 and you will get the figure in pounds !

[Ppiman in reply to pusillanimous]

It’s amazing what different countries do charge. In the UK, the doctor likely pays a large chunk to the private hospital where he rents his rooms. In the past, you might well see a doctor in their own house.

Steve

[pusillanimous in reply to Ppiman]

Yes, I recall the days in the UK when our family doctor used to call, and pre NHS, in rural areas would accept payment in kind. Just when WW2 was over, but my dad was not yet home, I, as an inquisitive little toddler poked my finger in the cogs of the mangle when my mother was doing the laundry. I won't go into the details of how it was sewn back on etc, but move on to the stage where I was in our family doctor's care. I needed penicillin injections, my mother was struggling for money because dad was still away in the army, they cost a Guinea a time. The doctor paid for them and told my mother she could pay him back when she could, Eventually he told her not to worry , he didn't need to be repaid. BTW, in SA the specialists rent rooms from private hospitals too!

[Ppiman in reply to pusillanimous]

Oh dear! I remember those mangles well. I should think you’re missing a bit of your finger still?

Your story reminded me of our next door neighbour - a lady we boys called Auntie Kit - who, in the early 1960s, had bought a Hotpoint electric mangle - very posh compared to our wooden and cast iron affair. Well, one day, we heard screams! She’d managed to get her dress somehow caught and was being pulled into the rubber rollers. My mother rushed round to help her out but luckily she was not injured.

Steve

[pusillanimous in reply to Ppiman]

No it's remarkable, my mother put the tip of the finger back (it was hanging by a piece of skin.) I eventually got to Windsor hospital where it was reattached. This was surgery on a two year old's hand, Today you would never know, the nail grows with some striations, but that is all. Even as an adult I have small hands, so I can imagine what they were like at two years old. I still remember the mask going over my face for the anaesthetic and the anaesthetist's face, Brilliant surgery.

[Ppiman in reply to pusillanimous]

Well - it was a fascinating story. And that is some memory!!

Steve

[Petaca in reply to Ppiman]

My bill for an ablation 10 yrs ago was $75k US. Paid by insurance.

(but I had to sell my business and go on Medicaid to get the insurance. For 30 yrs I could not get any insurance because of being “high risk” and self employed. Then “Obama Care” started but I still could not afford the premiums…. So I sold my coffee shop and retired. With no income I was eligible for Medicaid . The day after I qualified for the insurance I was in the ER with pericarditis. I feel blessed!)

Now at 69, I have Medicare/Medicaid. Have not seen the figures on my recent ablation.

I am so grateful to have any help after being uninsured most of my adult life.

[Ppiman in reply to Petaca]

What a story. Life in the USA is very different from over here when it comes to healthcare. Our system is struggling at present, though.

Steve

[Petaca in reply to Ppiman]

Reading these posts, I can tell you all have struggles with your health care system. Different struggles than here, but still hard.

The support and information from this forum are so appreciated.

[Ppiman in reply to Petaca]

I get the feeling that some European countries have far better health systems these days. The UK’s famed NHS, free to anyone at the point of use, is going through a particularly tough time with far too few clinical staff and beds available. The government blame the management but I think we all know the root cause. And as for trying to get dental treatment over here, it’s rapidly becoming a wholly private system for adults.

My two friends in the USA seem to enjoy good health care but I imagine they had decent insurance when working.

Steve

[Petaca in reply to Ppiman]

Self employed folks have a difficult time with insurance. At least before Obama Care. In my case insurance companies would not insure me because I was considered high risk from having heart surgery at 9 yrs old.

If I had worked for a company with benefits I could have possibly gotten insurance.

When health care changed during Obama’s presidency, the big deal for me was that insurance companies had to have a program for high risk individuals and those with preexisting conditions. It was huge. But insurance premiums were expensive and for me that was a problem.

My solution was to retire early and go on state funded Medicaid for us low income folks.

[Ppiman in reply to Petaca]

It’s never good to be ill but to be so and not to be properly cared for in a timely fashion can be really hard.

It seems to me that more than at any time since the major social improvements that followed WW2, the quality of health and social care available to those without wealth is diminishing.

Steve

[Rhiannonimity1 in reply to Rosebank100]

I have enquired in the past and was told £16k at Spire Blackpool.

[etheral in reply to Rosebank100]

Is any kind of private insurance available in the UK?

[mhoam]

Hi, I was in persistent AF when I had my cryo-ablation in June 22 so it definitely doesn't stop it happening.

They did the ablation first whilst only lightly sedated and then increased it so I was "out" when they did a Cardioversion to put me back in NSR. I guess seeing the rogue signals helps the ablation to be successful.

Good luck

[BobD Volunteer in reply to mhoam]

Makes no odds as they unfuse a drug to cause it if you are not.

[Gumbie_Cat]

I went on the waiting list last July, and had the ablation in December. I had been told 6 - 9 months. I think it would have been a bit later, but I phoned to ask - and when I mentioned in passing that I seemed to be stuck in AF, the secretary found a space. All NHS.

While I hate being too pushy, there is that expression “shy bairns get nowt”.

[nikonBlue]

Hey there,

I saw my EP a year ago and only yesterday I received a date for the Radiofrequency Ablation....eeek! Terrified is an understatement. Not till March so am on a very hard push to lose a bit more weight. I'm not massively overweight having lost just under a stone (yes, still in old money and old measurements) since that visit last February but I'd like to lose a bit more as obviously it will help.

Now, apart from the terrors setting in 😱and assuming that I WILL find my way to the correct part of the hospital I was just wondering about this whole radio frequency thing......so c'mon people, reassure me here please!!! I had already done some research myself but there's none better than someone who has actually been through it. Can I just add that my EP says I'll be having a G.A. as I'm very anxious and would never be able to stay still!! I'm also taking part in a study for an EP from Australia....apparantly. 😱

As far as waiting lists go, I actually had a letter in November more or less saying they had no idea how much longer I'd have to wait so I got in touch with my electrophysiologist just to ask about medication (Flecainide) and low and behold within a few days the letter with the procedure date arrived. Always worth contacting them I guess though I just wanted the go ahead to keep taking the flec.

Stay well all,

Blue x

p.s. I'll be going to the Royal in Edinburgh .

[Gumbie_Cat in reply to nikonBlue]

I had my cryoablation there. Everyone was lovely, and it was far less scary than I thought. Although it was sedation, I was truly out for the count for most of the process. The worst for me was nausea afterwards, and really this blanking period as I have been back in AF non-stop. I’m finding the uncertainty or what happens next really difficult.

The process itself though, no problem!

[Jalia in reply to nikonBlue]

I understand your fears . I've had 4 RF ablations, first one in 2009 when there was very little info about. I was most reluctant to go ahead. It was only after a one off bout of heart failure and further discussion with a lovely cardiologist that I agreed to be referred to an EP in London. I was dealt with very speedily.

Honestly, if you're having GA you will know nothing about it and will be so well looked after. I've had one GA and the rest , which were circa 4 hours long , under sedation. I actually preferred sedation.

Try not to worry too much ! Good luck with the weight loss. Every little bit helps. I've struggled with my weight most of my life , always have to keep watch. I believe that it's particularly important to keep weight down, or continue to lose if necessary, after ablation.

[nikonBlue]

Thanks guys for the replies.....I'm just a bit unsure as the thought of having to have this procedure done multiple times is really scary....... I have several weeks to think about it all I guess.

stay well all,

Blue

[Jalia in reply to nikonBlue]

This may not be necessary. Once you've had one you won't be so worried about future procedures.

Before I had my first one at The Heart Hospital in London a group of patients were invited to a meeting with one of the EP s to explain about the procedure and take questions. I was quite mortified to hear that I almost certainly would need more than one due to my long history. Little did I know that I would have four in the following 12 or so years.

[Rhiannonimity1]

Update. Yesterday at 12 midday an arrhythmia nurse told me to take 3 x 100mg flecainide in one go. After 8 days in AF , I reverted to SR at about 11pm. Brilliant - but Oh My - 300mg flecainide in one go was nasty. I was hallucinating, my head very fuzzy and I lost a lot of my vision between 4 and 8 pm. I realised that I couldn’t see the TV screen. Very bad upset stomach. My vision was back this morning, but I was too woozy to do anything. I’m all but back to normal now (4pm) except very upset stomach. I converted though - Yay! I have now been told to come off daily flecainide gradually and just keep taking bisoprolol. Extra incentive to lose weight, but at least I have been given another chance.

[Rhiannonimity1 in reply to Rhiannonimity1]

thank you all for sage replies.

[SeanJax]

waiting list for ablation, 2 years? so sad. No further comments

[wilsond]

Long waits were the norm here in Coventry prior to Covid (12 _18 months)and are still long but slightly improving.Perhaps look at another hospital? Xx