Newbie here.
Persistent AFib for 3m. Echocardiogram done. Cardioversion likely to be recommended.
Wondered what waiting times people were experiencing?
Thanks for any contributions.
Newbie here.
Persistent AFib for 3m. Echocardiogram done. Cardioversion likely to be recommended.
Wondered what waiting times people were experiencing?
Thanks for any contributions.
I'm from the US, so can't tell you the NHS waiting time for cardioversion. But I can tell you that the longer you wait, the more chance the heart will start to remodel making future interventions such as rhythm medications or ablation potentially less effective. At the one year mark in afib, you are entering "long term persistent" territory, where treatment outcomes become significantly less successful. If going private is an option, that should shorten the time. Anti-arryhmic's might be another option to get you into normal rhythm.
Jim
Hi Hallane
Do you know what your heart rate is? The main thing is how are you feeling in AF?
Jean
Hi Jean,
Heart rate constantly up and down between 55 and 85 but I don’t really feel it as it’s not in the racing 100+ zone.
Main side effects are tight chest from beta blockers.
I am 66 and was told advised today that the AFib would cause real difficulties within 10 years. At the moment I can walk 5km without issue (as long as no serious inclines).
Basically told to press my GP for Cardioversion.
Yes, a cardioversion would be a good idea. I use to wait 4-6 weeks for one, but my last was almost 4 years ago so timings may have changed. After 3 unsuccessful ablations I'm in constant AF now and just live with it and it doesn't affect me too much, heart rate is normally between 60-90bpm.
Jean
Hi Jean. What does AF feel like? Is it heart fluttering around? Skipped beats and a off rhythm?
Yes, it's all of those things. Most people can feel this happening in their chest, either with fluttering or strong extra or missed beats but there are a few that don't. I've had all those feelings and been aware of them, none are usually painful but there again very rarely some people feel pain. If I felt pain (never have) I would be off to A&E. It can often make you feel really drained of energy. After a day or two with fast episodes it would leave me exhausted for several days.
Deep breathing right into the stomach (not so much lungs) can sometimes calm the erratic beats.
Short episodes are generally nothing to get stressed about. The more you do your best to ignore what's going on the quicker your heart rate will return to normal. It took me over 10+ years to be able to accept that. I would never recommend doing anything that required physical effort during an attack. I do sometimes wonder though whether walking slowly and the thump of our feet hitting the ground can put us back into normal sinus rhythm.
Jean
Things I've learnt during my years with AF which may help:
Having had AF for almost18 years, three ablations and numerous cardioversions my advice to people who have just been diagnosed with AF is the following:
1. You are most unlikely to die from AF. I used to think that the way my heart bounced around in the middle of the night I would surely be found dead next day. Still here though!
2. Changing your diet to a more plant based one, avoiding any foods containing artificial additives, not allowing yourself to become dehydrated, cutting back on sugar and losing weight (if it's needed) will all have a beneficial effect on your AF. Artificial sweeteners were a sure trigger for my attacks. How I wish I'd known all of this before having any of my ablations. Would I have listened if anyone had told me? Probably not, because I believed ablations would cure me - three didn't!
3. This is a hard one, but looking at gadgets that show your pulse and AF will make you anxious and anxiety feeds AF. I was obsessed with what my heart was doing for about the first ten+ years of my AF journey and my attacks were so debilitating I'd end up in a hospital ward, it has taken me a long time to take my mind off this subject and get on with living. The less I think about it, the better I feel. Now I used to feel cross with people who suggested I stop looking at my pulse rate machines, I thought that their AF couldn't be as bad as mine and they didn't understand how poorly attacks made some of us feel. I would get cross with anyone who said they could still go on holiday and carry on life as normal. They made me feel evil, by not understanding how ill I felt!
4. When sitting watching tv make sure you don't slouch, or become so absorbed in what your watching that you unwittingly do shallow breathing. If you do your heart will protest. Try not to wear anything tight around your waist as this could push the organs inside your stomach upwards against your heart. Also try not to have large meals as they bulge out the stomach and your heart wont be happy with it encroaching on its space, especially when you’re sitting.
5. Try supplementing with magnesium (I use glycinate from YourSupplements). I feel really well and there's nothing I can't do now, despite being in constant low rate AF. Or at least I think I am, I don't check these days.
These are all the tips I’ve saved over the years, from posts by various forum members here, for stopping an AF attack:
I am a therapist in private practice for over 20yrs.One of my therapies is yoga based. Having quite an accurate knowledge of anatomy, neurology and physiology also having PAF I have found this technique helps me immensely when my heart is fluttering like crazy. Make yourself comfortable either on a bed or lying on the floor, position a pillow under you head, Raise your left arm in an extension position as if you are doing the backward crawl. Stretch as much as you can and imagine that it is stretching your heart muscle...I bend my arm and position my hand under my head palm upwards.. Stay in that position for as long as you can or until the fluttering subsides...At the same time I think of something pleasant. It does not matter what you think about as long as it is a pleasant thought for you. This stops my heart jumping about almost instantly....I also place my right hand over my heart area...Don't panic and just keep calm thinking pleasant thoughts....I do hope this helps you. Kind Regards. C
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As someone else who finds yoga breathing and some positions helpful, I would love to try (xxxx) suggestion, but lying down flat tends to make things worse for me. My most helpful position, taught me by a lovely yoga teacher, is based on a yoga forward bend. I sit up with my legs outstretched in front of me and a pillow under my knees, and then bend forward from the hips not the waist, with my arms relaxed but outstretched towards my ankles, and breath deeply and slowly. It's not so good on a full stomach and is more comfortable with your knees slightly apart, and I guess you have to be a bit flexible to find it comfortable, but it has proved to be a great help.
I agree with (xxxx) that staying calm and focusing on something pleasant is a must, and I've even fallen asleep like this as most of my episodes occur at night. All the best Liz
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Finally, like AV nodal re-entry, some people have recurrent rapid rhythms that are infrequent and easy to self-control by using various methods to increase neural slowing to the AV node (so-called, "vagal manoeuvrers"). Using these manoeuvrers, one can sometimes stop the arrhythmia. These manoeuvrers include:
Bearing down forcefully like you're having a bowel movement for 5-10 seconds, then slowly exhaling in the neck while lying down for approximately 5 seconds
Placing very cold (soaked in ICE water) cloth on the face abruptly.
Coughing forcefully
Rubbing the carotid artery (only one side at a time, never both)
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There's a yoga breathing exercise that has worked for me before. Lie on your back, bend your knees up so they are above your hips and your lower legs are at 90 degrees. Take a breath in for a count of 4 then breathe out for a count of at least 8. As you breathe out, bring your knees into your chest so you curl into a ball. When you think you've got all the air out of your lungs, try and breathe out more! Breathe in again for 4 and release your legs out to the starting position. Repeat several times. It helps to reset the diaphragm and focus should be on a good long out-breath.
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So, after discovering that making myself sneeze stops Afib. I have discovered another novel way to stop an attack. It involves drinking a litre bottle of water while holding my nose. It's especially effective if I experience almost panic as I can't get a breath. I don't always finish the bottle but find that's not always necessary to gain the desired effect. Works especially well if I catch an attack early. Kenny
Please let me know if any of these procedures work.
Jean
Some great advice there. Luckily i had a cardioversion that worked as i was in constant Af. I do wonder if i have had episodes of AF since. I do get regular palpitations but i have had episodes of a fast heart beat that seemed out of control and i was flustered. so not sure if that was afib. heart was skipping all over at the time trying to catch up
Hi Hallane,
I was put on the list in June and they said it was going to happen in October (over 3 months waiting). Then they suggested to take the meds and be prepared if a spot came up, and the called me for the 21st August. Luckily by that time I had won the complaint and escalation with private insurance and got my cardioversion done today. So basically between private and NHS, I just gained 2 weeks. I'm in South Wales, I suppose it depends on the area too.
Hi En85
I’m in South Wales too. I had an appointment with private doctor on Saturday but seems long waits even private? I have just managed to get a cancellation for 31st Aug for an echo cardiogram which is only first step. Then another week to see cardiologist so no idea when ablation ( his recommendation) will be…
When you were told 3 months - was that private or NHS? I have been referred to NHS too but been told long waits still from Covid.
Was insurance a problem? Mine have said yes to echo but obviously I’ll need to follow up if/when ablation.
Thanks 🙏
I'm not sure we are talking about the same procedure. I don't know about the waiting for ablation. I was writing about the cardioversion. For me it was 3/4 months in Prince Charles Hospital and just one month (because of the 3 weeks required of anticoagulant) at Spire Cardiff.
My insurance BUPA tried to scam me and turned me down saying first I didn't have symptoms so I had no right to cover and then they argued that it was pre-existing, although I had been with them 3 years and never made a claim before. I had to make a complaint for which they waited the very last day of 8 weeks to answer. The complaint was in my favour, but then they kept delaying answers and giving me the number to proceed with cardioversion, so I involved the Obundsman with urgent complaint. Anyway it has been done successfully on Friday 😌
If you have further questions, you can message me privately. I really struggled to access medical attention, starting from my GP, so I understand how it feels x
Hi - sounds like a nightmare , sorry to hear that. And glad it’s worked ! Happy ending .
Yes ablation for me. But I haven’t told insurance yet. I will do. Theyve cleared me for a consult and echo.
I was worried with mine they’d say same ( pre-existing) as I’ve had AF before. But it was classed a ‘one-off’ at that time. I haven’t had a problem with referral luckily as I was in A and E …And they sent the ECG to my GP… and then I called Aviva. They’ve said they won’t cover long term ‘chronic’ care…. I need to be in the NHS system for that.
yes would be good to PM in case. Can you do that on this app?
Hi Hallane, there was a long waiting list here so opted for a private CV in first instance - a good chunk of savings for something that lasted 6 days! I’m on waiting list for catheter ablation which is a much longer waiting list and meanwhile had a second CV with NHS after some weeks on an anti arrhythmia drug. In NSR for 5 days. Meanwhile learning to live with the persistent Afib and as Jim points out each passing month makes treatment outcomes less hopeful. So it’s vital to get a healthy diet, be a sensible weight, sleep well and exercise half hour a day - all of which I’ve done for years so no guilt to those with less than perfect habits - it can happen to anyone! Hope you don’t have to wait long for CV!!
Can I ask how you find out about the size of the waiting list? We've been paying into BUPA so if the wait is a long one I might see if they'd refer me for private CV.
I paid for first CV at a Nuffield and had second with NHS. The cardio team is excellent in both paces. My EP works across both establishments. Both he and the NHS cardio team have given me some idea of wait times for catheter ablation locally - around 7 months with NHS and a few weeks private - if I happened to have a spare 20k, which I don’t! Wait times for CV is much shorter - I think it was 2 or 3 months NHS but I wasn’t liking the wait and had it done privately within a couple of weeks. A lot of money for 6 days NSR lol!
Thank you, that's helpful to know. I don't yet have an EP, just been referred to the arrythmia nurses at Papworth. 2-3 months isn't a terrible wait for a CV but I'd rather have it done sooner - life has been on hold for so long already... We're paying £600 pm into BUPA at the moment so in some respects going private is getting our money's worth?? 😅 But yes, an awkward claim if it then doesn't hold you in NSR... And £20k for an ablation is wild, that's more than my OHS!!
Would you be ok to advise the cost please
Just looked it up - £1,700 this May. Can’t believe I did that!!!!! I think you’d be wise to use some of your Bupa fees for a private consultation at least as the sooner you get treatment fo Afib the better. 😊
I think I'll give it another week - I'm waiting on a referral letter from my ACHD consultant to the arrythmia team. Once I have that, it seems like a good document to share with a private EP. Bet they'll want *another* holter and consultation before booking in a CV.... And I'll ask my ACHD nurses about wait times too!
I think a lot depends on where you are in the country. I’m in Cambridgeshire and my AF started in November 2022. I had an echocardiogram in December but didn’t see a cardiologist until May. I just had my (successful!) cardioversion on Tuesday. I have also had a mechanical aortic valve since 2015 so I was already on Warfarin. They think the AF was possibly triggered by a virus.
hi there,
I first saw my Electrophysiologist (E.P.) (Edinburgh) in February last year and he said it would be at least the end of the year before I got a date for the procedure. I then got a date for March 23 so all in all I didn't think that was too long a wait. I'm still waiting for a check up appointment now. I spent the waiting time pre-op trying to lose some weight and I did but still trying!!
stay well,
Blue
Consultant recommended CCV for my wife's persistent AF. In queue been told its a 10 - 12 week wait. This is in North Devon.
Hi. I'm in Hampshire, UK. Diagnosed A&E end Nov 22. Echocardiogram beginning March 23. Arrythmia nurse appointment chased by GP end June after a call to take me off anticoagulants that I said I'd be concerned about due to echo summary report on my hospital notes. Nurse appointment 12 days ago, meds change and cardioversion booked for 4th October with possibility of an earlier date if there's a cancellation. I think I may have got lost in the system and should probably have chased sooner, but didn't know how.
Interested to know why you had to come off anti coag following echo report.
I am on anti coag and have just had an echo
The GP hadn't seen the result, so was assuming a Chad score of one as I am female. Hadn't spoken to me since sending me to A&E last November! Cynical me thinks cost-saving, better self concedes benign ignorance!
My chad score is 1 based on male aged 66. My GP simply said it was a no brainer not to go on anti coagulant (Edoxoban) as it reduced the stroke risk from around 2% to 1%. Still a risk but will take the slight benefit of anti coag. I seem to only have the rubbish side effects with beta blockers
im in the midlands and was booked for cv after about 3 weeks but chemically reverted to nsr before the appointment.
I’m in Notts.
It took almost two years for me to get my CV done but worth the wait. Was successful. Been ok since Dec 22. Good luck. Hope yours is quicker. Don’t worry about the procedure…easy!
Hi
You are lucky.
Had stroke with AF Sept 2019. 4 days later shadow on thyroid - papilliary cancer.
No follow up but had CT Scan, Carotid Scan only. Had suction cups on but removed immediately as Carotid Scan and whipped out to minor hospital after.
Struggling with Metoprolol breathless, fatigued and couldn't exert I was desperate so at1 year 3 months asked for a Heart Specialist. Carotid Arteries were clear.
Feb 2020 I had Thyroid removed with 12 right lymph nodes (2 affected).
3 changes in meds with 24-hr Heart monitor.
Metoprolol down to 1 x 23.75 from 3 x 23.75 and changed to Bisoprolol.
Heart Rate changed from 186 to 176H/R avg and little exertion as I could not do much.
At 2 years 3 months my new Locum 80 year old referred me to private H/Specialist.
CCB Diltiazem saved me as H/R dropped down to 51 Day. So it was twinked to dose 120mg from 180mg (1/2 dose).
So CCB am and 2.5mg Bisoprolol at PM for BP.
Now 18 mths later and further reduction in H/R Rest.
Day Rest 120-124 / 69. with H/R 60s. Night has remained at 47avge.
No cardioversion, no ablation, no anti-rhythmic meds. The ECHO at 1 year 3 mths showed an enlargement at the back of my heart. ***Any abnormal heart structure puts an end to these procedures. I also failed the aspirin test after stroke.
You have a journey and it is so important to checked properly before the journey is forward.
Some of us need to accept control AF by meds. Take care.
cheri JOY. 74. (NZ)
Maybe I've been 'lucky' (questionable 😬 ) as I've never had to wait for any of my 24 dccvs. Mine always required admission as very symptomatic ,high rate and refractory to drug treatment. I was cardioverted successfully each time either in theatre or A& E
When I'm in AF and pill in pocket doesn't work after 24 hours I present myself to a and e and they usually csrdiovert me within 12 hours. My symptoms are usually low blood pressure and light headedness... tell them just how crap you really feel and they should just do ot unless you're not on blood thinners. You usually have to be on blood thinners for a month prior to cardioversion.