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Waiting Time For Cardioversion and lasting damage

Decka59 profile image
33 Replies

I have been in Fast Atrial Fibrillation for possibly three months now. I had a chest infection which I suggested to the GP may have been a touch of Pneumonia as Antibiotics didn't help nor did steroids which normally do. I am Asthmatic. His answer when I suggested Pnuemonia was Hmmm.. Anyway I was 150 BPM then. He got on the phone to a Consultant who said 2.5 Bisoprolol and make an urgent appointment. I ended up making my own appointment as the waiting times were ridiculous like 63 days for one. I sat on the site and got one someone had cancelled in 3 weeks. I saw a cardiologist and was still 142 and the meds were upped to 5mg x2 daily added Rivaroxaban 20mg for Cardioversion. He said four to six weeks waiting time. Saw me two weeks later and still no appointment made 111 BPM. After 10 days of ringing the hospital I was told verbally 25 August still to be confirmed. Also they only do one per week. This will mean I have been in Fast AF for nigh on five months. Constant banging in my ears, short of breath, tired beyond belief.. Plus I could be made unemployed after 18 years under capabilities rule due to the waiting time. They said anyone can make this excuse to jump the cue. I asked the GP if this will cause damge he said over weeks No, over months Possibly.. Any ideas please 5 months constant AF?? Thanks.

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Decka59
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33 Replies
BobD profile image
BobDVolunteer

I'm not medically trained but 110bpm is not really very fast and only slightly above normally defined limits. If it were around 180 to 200 as for many people I would say worry a little but doubt you have a problem long term if things go to plan. You must be anti-cogulated for at least a month prior to cardioversion anyway.

AF may if uncontrolled lead to enlarged atrium but this would normally reverse after treatment unless it went on for years as happens with some asymptomatic patients who are not aware that they have AF.

You really need to see an electrophysiologist for best advice and treatment. Read all you can on AF Association website for as much knowledge as you can hoover up so that you can properly engage with those treating you. .

All this waiting can be frustrating but seems to be all too common.

If your rate was really high then it is likely you would have been admitted and cardioverted as an emergency supported with Heparin iv as I have been in the dim and distant past.

I go along with what Bob has said about getting ' genned up ' on AF so that you can properly engage with medics.

Sandra

Decka59 profile image
Decka59

My rate was 150 at one point. My GP wanted me admitting the same day. I waited that long the medication dropped it slightly to 140 ish and they kept upping the beta blockers its now 110 after 3 months. I've been on anticoagulant for 6 weeks now and have another six week wait if it goes to plan.. Being an HGV Driver/Assessor/Instructor my licence has been revoked and I have to be stable for three months to get it back and work again. By this time my job of 18 years may have already gone down the pan. Not to mention the money situation. I have read up on things thanks folks. I don't profess to know it all but I am quiet good with things medical. I was a Qualified Care manager for six years and have been a Qualified first Aider for many years..

I will keep reading though.Thanks again.

rosyG profile image
rosyG in reply to Decka59

I think it's very poor that you've had to wait so long- just keep ringing up for cancellations and tell them about the employment point

Buffafly profile image
Buffafly in reply to Decka59

It seems unfair that you should lose your job. I assume you have been in touch with HR about the situation? There have been many posts about employment law but you may already be well up on that too. Being worried about your employment will not be helping your heart either. I hope you get an appointment soon.

Decka59 ...i see your point re not working. This makes it doubly bad for you. Presumably you have let cardiology know your exact position re loss of your licence and income.

I don't know what else to add other than keeping on to the hospital.

It's bad enough having AF without losing your livelihood as well.

I do hope you get sorted very soon.

Regards

Sandra

Decka59 profile image
Decka59 in reply to

Thanks Sandra. I did point this out to the Cardiologist who duly told his secretary to escalate this appointment but it goes to a Nurse Practitioner from her who deals with the Cardioversion appointments. It took me ten days to get to speak to her having rang everyday sometimes two and three times a day. I was being fobbed off with, "Oh she's got a clinic today, and don't ring tomorrow as she'll be getting through her emails, Oh she's off tomorrow".. When I finally got to speak to her she told me, "Anyone could use that excuse! There could be other people going to lose their jobs too. Can't put them all in the front of the queue" Also she said I only do one a week. So in all she Does one per week in a huge hospital. She reads her emails one day, she has a Clinic one day, She has a day off and a weekend off, The other day must be a half day because it's cardioversion day. If she isn't there nobody does it. No wonder our NHS is on it's knees. Phew!!! wait a minute I'm out of breath now!! Haha..

jennydog profile image
jennydog in reply to Decka59

Decka59 I had a 2pm appointment with my Cardiologist one day. He mentioned that he had done 6 ( SIX ) cardiovertions that morning.

Decka59 profile image
Decka59 in reply to jennydog

One per week here disgusting. x

cbsrbpm profile image
cbsrbpm in reply to Decka59

Sorry to hear all your problems, I know how you feel as I am 120 BPM for last 2months and it's exhausting. Your waiting time is atrocious, let me know where you live and I will make sure I don't move there.

Desanthony profile image
Desanthony in reply to Decka59

Where are you located? Is there another NHS hospital near you that you could go to?

opal11uk profile image
opal11uk in reply to Decka59

Get on to the Hospital Chief Executive.

Maggimunro profile image
Maggimunro in reply to opal11uk

Now that is a good suggestion. Write straight to the Cheif Executive or Chairman and set out your concerns. Trust me, you will get a fast response.

Desanthony profile image
Desanthony in reply to Decka59

I don't know how much it would cost to have this done privatley but it may be worth finding out while you are still on the NHS waiting list. You will need to get your GP to refer you to the private hospital if you find one but it may be worth finding out if it is available in your area.

AmigoAndy profile image
AmigoAndy in reply to Decka59

Decka59 This sounds quite similar to my recent experience of trying to get treatment/CV through the NHS, unfortunately it seems our NHS system, that used to be the envy of the world, is increasingly over-stretched and under-resourced and really struggling to cope with current demand in many areas.

This isn't in London with Imperial College Trust (Hammersmith, St Marys etc) by any chance?... The one CV a week story sounds very similar to a recent phone conversation I had where I was told that the backlog had been building up for a few months since the system was changed, and although this had now been recognised as an issue, it was likely to take a while before things would improve (with the current waitlist for routine CV's apparently being around 4 months).

After some consideration, I decided to go down the private route, so if you are thinking about that option, costs are in the region of £1800 (although that may vary depending on the particular hospitals/consultants involved of course).

You are unfortunate in having a nurse like that and to speak to you in that manner as well. I have a lovely helpful arrhythmia nurse at my hospital ( doesn't help you though! )

Just hope that all goes ahead on 25th.

Sandra

Decka59 profile image
Decka59 in reply to

Thanks x

opal11uk profile image
opal11uk

The waiting lists are shocking to say the least and I think a lot of people are experiencing this now with the state of the NHS which is under resourced and stretched to breaking point. If I was in your situation I would find out as much about the condition as possible, you need to try and relax, difficult I know, but your state of mind can and does affect your A/F. Have a look at this information from Guys Hospital, it explains a lot of things. guysandstthomas.nhs.uk/our-...

Good luck

Decka59 profile image
Decka59 in reply to opal11uk

Thank you

Cannot advise re constant AF but I can understand your frustrations and it seems you are very unlucky where you live. My AF event used to be about 190 and also 240 but short term thank goodness. Not sure how you are feeling but I can pick up my heart rate when its in the late 90's and I feel unwell so anything higher than that it must be horrible feeling as you do. There is not appropriate to speak to you like that and I would write a letter about it, alas nothing changes until people say what could be done better. Trouble is feeling as you do is not the best time to do it but I think you should.

sleeksheep profile image
sleeksheep

I can only comment about waiting periods as my BP was never an issue.

pulse was 68 / 74 pre cardioversion its now 53 / 58 which is normal for me.

First cardioversion was nearly 12 months from the initial referral , Hospital lost the referral so I wasnt even on the list. With my last cardioversion it was a wait of was over 30 months because the registrar didnt think it was of any use , only after going private was I reinstated on the list.

Thats a story in itself. My specialist saw me on a Friday expecting that I had been converted the previous month, but as I hadnt been .....

He just said leave it with him , and the following Tuesday I was taken in to have a cardioversion.

Stayed in sinus rhythm since last year with no irregularities ( touch wood)

Bagrat profile image
Bagrat

I would get in touch with PALS. Every hospital in UK should have a team .They are a liaison service who will listen to your concerns and try to help. When I had my cardioversion. It was done by specialist nurses and the list went on all day. 1 a week sounds barmy.

R1100S1 profile image
R1100S1

Hi

Don't understand the limitations on driving- I thought SF was one of conditions that DVLA were ok with, well that's what they said to me a few years ago

Hope you are sorted soon

Eddie

Persistent AF with HR in mid 90s

Decka59 profile image
Decka59 in reply to R1100S1

Hi ..I can drive a car.. I have all manner of HGV qualifications. This is my job and I have had it revoked. So can't earn either.

Arveno profile image
Arveno

Living at Sweden I am horrified when I read about your (and others here described) type of health care in UK. When my husband get heart collapse symptoms and Afib at holliyday i Czech Republic they give mim beta blockers and Xarellto for 3 weeks and than performed electroconversion before they allowed journey home to Sweden. He was hospitalised for week at intensive care dept, Excellent first class health care payed by EU insurence. The same for everybody. After 2 repeated incidents in Sweden (bpn 120-145 ) they give him electroconversion immediatelly or second day morning..

I belived that health care at UK is as good as at other EU countries. Now I wonder. It is shame, tel them and go directly to cardiological /internal medicin emergency dept. Sitt there and if they wish to se you collapse do it there. I am mad when I see how negligent they are to your suferig. Sending to you best wishes. Fight to you!!!

Desanthony profile image
Desanthony

There we have the answer. Go on holiday to the EU - quickly before Brexit takes effect, and get it done there as an emergency! Funny but almost serious about this, now considering it myself. lol.

Marjolaine profile image
Marjolaine

Your story illustrates just how much of a postcode lottery there really is. I was admitted to hospital after complaining via 111 of a pain in my arm and chest. I had a resting HR fluctuating between 110 and 130 but which soared to over 180 if I so much as plumped up my pillow. I am 47. I am on 2.5 mg bisopodrol digoxin and have to wait for 6 weeks before I have my heart restarted.

I had no real idea what AF was and was not given any advice at all on leaving hospital (I was in for 5 nights) and so exhausted myself doing a bit of gardening (I planted a couple of things with a trowel). I am now much more careful. I have a cardiologist appt on 26 July to set the date for the cardioversion

Decka59 profile image
Decka59

Thank you everyone for your kind replies.

AFCyclist profile image
AFCyclist

I have had similar frustrations getting cardioversions. I ended up "project managing" it myself and contacting admin staff who booked the cardioversions. Once my GP sent me to A+E and they did me overnight as they did not have any emergencies. I have used that route twice now. Need to make sure you meet their anticoagulation requirements.

cuore profile image
cuore

When you talk about constant AF for 5 months, you are saying that you are in persistent AF. I would suggest that you read the paper of Michael Haissaguerre that he gave in a 2014 symposium: afsymposium.com/february-2014

At the stage you are in, you have possibly 3 to 4 targeted areas such as anterior left atrium, septal left atrium, posterior left atrium, and inferior left atrium beyond the pulmonary vein regions.

Time is of the essence. Do not let the system keep you in persistent AF, because should you eventually choose the ablation path, the longer you are in persistent AF the less your chance of a successful ablation.

I can't add much other than to say due to an incompetent GP I spent 3 months in fast AF (195 BPM) then 2 weeks in hospital trying to get my heart rate down to below 100bpm to do an echocardiogram. Then a further 3 months waiting for a cardioversion with heart rate somewhere around 110bpm ( was taking 12.5 mg bisoprolol + Amiodorone)

My heart had become enlarged particularly the left atrium, but 3 months after the cardioversion it was back to normal size.

Fingers crossed it all goes the same way for you

Decka59 profile image
Decka59

Hi All

Thanks for all your replies and concerns. I have since been rushed into Hospital under blue lights. I was given Fleicanide and Digoxin on top of Bisoprolol and Rivaroxiban. Then they dropped the Fleicanide and gave me Atorvastatin. They got my heart rate stable but around 80 - 100 and said I wasn't poorly enough to do cardioversion whilst I was there and in cardio Care unit for two days then on a ward. They have said they will squeeze me in on the 10 August. I've now been in AF since Before May that I know of. Taking Anticoagulant since 06 June in prep for Cardioversion. I've been told I need an Angiogram incase there is any damage caused now with it being so long and having pains, but I'm not poorly enough to have Cardioversiion now whilst I am actually in there.. I'm worn out and been rushed into hospital so how poorly have I to be. The pains are because it's never stopped going like the clappers. Do these people have no common..I'm now in between two hospitals as I was taken to one the ambulance chose. Phew !!!

Rellim296 profile image
Rellim296 in reply to Decka59

This doesn't sound the best! What does your GP have to say? Or perhaps you can't get an appointment at the surgery before you are squeezed in on 10 August.

I've never had an angiogram and I feel that having one must be very reassuring if it provides a good report.

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