I have been in permanent AF for 18 months now. I get out of breath when walking briskly, climbing steps, lifting stuff and tying my shoe laces.I have been offered a pacemaker, then a few weeks later a node ablation.
Two questions.
What would be the long term prognosis without any intervention.
Should I ask for a cardioversion prior to the pacemaker being fitted rather than node ablation as it may right the AF.
Thank you
A pacemaker will not normally stop AF. PM and AV node ablation will not stop AF but will ensure that your heart rate is regular and controlled by the PM. AF may still continue and may be felt but your energy levels etc should be improved due to regular heart beat. A DCCV (cardioversion) may return you to NSR but then AF may return at will so it would merely delay geting the PM and AV node ablation.
If your curent AF is uncontrolled with a high rate then yes your heart can suffer but provided your rate is controlled and below 100 there should be minimal damage.
As Bob says - a pacemaker would not normally stop AF. Which leads me to ...
first ask - are you sure you have not been offered an implantable cardioverter defibrillator (ICD)?
and second say - I would not wait or hesitate to get an ICD as the potential upside is massive ,- and the sooner its in the better the long term prognosis / effectiveness of the ICD is likely to be.
I have similar attitude about getting a pacemaker (although I don't see it stopping AF - I am in persistent a-fib and have a pacemaker, but that is to prevent pauses in the heart rate).
Thank you, that sounds good. I'll enquire.
You may have already tried some of these , but depending on your unique situation you might try the following prior to an av node ablation, which cannot be reversed and will still leave you in afib. However, , it may let you get off some rate reduction drugs, which could improve your quality of life --
1. Cardioversion
2. Daily antiarrhythmics.
3. Catheter ablation.
4. Surgical ablation( often works when a catheter ablation will not work.)
Jim
Thanks for the advice, I didn't realise there were different ablations. I thought the idea was to (possibly) cure AF.
Basically two types. Catheter and surgical ablation.
Surgical ablations are a little more invasive, but can work where catheter ablations sometimes fail such as situations like yourself where you've been in a fib for a long period of time. Unfortunately, many ep's are not that familiar with surgical ablation because they do not perform them.
if you're interested, and want to save time, you might get a private initial consultation with Mr. Steven Hunter, who is a consultant cardiothoracic surgeon at Northern General Hospital in Sheffield, UK. H
After that if you decide to go ahead, he could probably get you on his NHS list.
Jim
The symptoms you list can be common with permanent afib including the medications you may take. It is your decision on how they affect your quality of life.
Did the doctor discuss the advantages of a PM and node ablation possibly to reduce your symptoms ? Is your heart rate and blood pressure controlled with medication ?
Reading your bio, your afib has been ongoing for quite awhile and developed into permanent. If you have not, consider a consult with an EP.
I've never been prescribed anything for high blood pressure or heart rate. Just blood thinners. I was speaking to an EP. I think I may go back and chat again after all the information gleaned. Thank you.
AF is different for all of us but I have been in permanent AF for several years now. I have exactly the same symptoms of breathlessness as yourself and, sadly, must accept them.
I have had cardioversion, drugs and two ablations none of which worked for more than a few days at a time. I only take anticoagulants now. Being in permanent AF hasn’t stopped me from doing anything in my life. I’m just slower then I used to be but some of that could be down to age!
Hi, it looks as though you have had lung problems? To answer your question about the cardioversion, as the last one only lasted for a short time I doubt whether another one will be more successful but it is still possible to have a cardioversion after you have had the P&A.
Thank you, that's helpful.
Hi
You can go down another route and that is med/meds.
I am 5 years post Stroke, rapid & persistent AF. Then Day 4 found to have thyroid cancer finding a shadow on my thyroid whilst doing a carotid arteries scan which I might add was clear.
The stroke was caused by a rogue blood clot in the undiagnosed AF saga.
Put on anti-co.agulants, beta blocker Metoprolol which I said NO to but overridden. I said they will make me breathless and they did with pauses at night avg 47bom night but 186bom - without exertion. Changed to Bisoprolol 1 year 5 mths later 156bpm day, 47bpm avg night no breathless or pauses.
First I would get your ECHO Scan assessed along with ECG and 24hr heart monitor to show your BP and heart rate over 24 hours.
Rushing into a PM is ludicious.
Although any BB as above did not control my rapid heart rate, introducing me to CCB Diltiazem was the best thing ever. And it looks like the Bisoprolol will be stopped because of showing low blood pressure.
Diltiazem acts on (me) dramatically to bring down and control my heart rate but also does bring down BP as well a little - out of the hypertension range.
PM is permanent and it 'takes over your heart's function." After that done because meds don't work, or side effects intolerable, but low numbers show.
The fact that you have never tried meds is a mystery. Usually meds first.
Numbers in heart rate with and without AF and BP with and without AF would be helpful, JackyMac.
cheri JOY. (NZ)
That's great advice JOY2THEWORLD49 . I will definitely be speaking to the EP today to ask. Thank you. I am beginning to freak at the thought of a PM!
I agree with joy here, probably worth investigating the unwanted effects of the drugs alongside direct interventions like ablations etc. we all know that beta blockers can make us tired etc.
Hi
I would be inclined to go to a private Cardiologist not a EP.
EPs are keen to 'work on your heart'.
A side effect of rapid Heart Rate are your symptoms. Or BP not normal either hyper or hypo.
A bit like your thyroid. Have you had TSH, T3, T4 and thyroglubin serum and antibodies checked?
Also at your age 'ha ha' 'getting older' your B12 should be at 700-800 whilst the Dr will say OK to 190. The aged need a higher level in 2000 found I was B12 deficient so I top up with Gold Top Dr proven Solgard 1000ug sublingual (a must dissolving under tongue) nuggets. 1 a day only - everyday until you reach desired level then less to maintain that level. I take them on 3 days week.
I'm pretty sure we can get you improved. Are you sweating when your symptoms listed take over? My cardiologist reminds me that we need the heart to work at least for 15 minutes or plus of the day.
My ECHO showed severe dilation of the left upper chamber atrium so no to cardioversion, ablation or an anti-arrhymic med like Flec......
In actual fact Diltiazem as a Calcium Channel Blocker is safer as an anti-arrhymic med if you have no venticle (bottom chambers) or valve abnormalities.
I feel a heart specialist will not push invasive procedures before looking through all your options.
By the way - do you still have cancer? Because the latest is that caution on prescribing an anti-co.agulant is necessary.
I am on PRADAXA 110mg x twice (the lower dose). I remain now in my 4th year of post thyroidectomy with 12 lymphs removed (2 infected) that there are 3 calcified areas under investigation for cancer (missed during surgery). I refused RAI Treatment and suppression from a Endoocrinologist pushing it. I was low risk and Feb 2022 was the big outbreak of COVID in Auckland where they would have sent me. Also Measles outbreak but I was tested with good immunity.
I remain anti this Dr Endocrinologist who pushed Metopolol med onto me when I did not want it. Then left.
It is my nice Irish Surgeon who remains under my wing through all the tests this year.
But it is my opinion whilst I have Iodine dye (2 CT Scans) and Iodine infusion (PET) that any camcer is stunted and no growth will be seen. Unfortunately my (young) Surgeon is retiring. Well he did my breast in 2005. His op of 3 previous exposed a carcinoma en situe in a milk duct. So he has been operating for I'd say 20 years. He is caring but I remind him that I wish to be included in these meetings about me.
A future further CT scan with iodine is scheduled for 6 months time. But then if no further growth it will revert to a yearly ultra-sound which discovered it (new area ad took pictures) back in February.
Fingers crossed for you, JackyMac.
cheri JOY
I had reached the stage when after all the meds (which made things a LOT worse for me), 2 ablations - 1st again worsened AF, 2nd gave me 3 years AF free. I eventually went for P&A with a RST - re-synchronisation therapy pacemaker because I couldn’t cope at all as I was so symptomatic.
The PM implant is under local anaesthesia and I was in and out within 7 hours. I had a few problems in the beginning but after things settled my AF disappeared. I then talked to my EP about cancelling the AV node ablation which is the part that leaves you PM dependent which is the scary part for most. We agreed there didn’t seem to be much point going ahead when I hadn’t had any AF for over 2 months. That was 2018 and although I’ve had a few AF bouts since when I had COVID, the vaccine, pneumonia and another serious infection - really nothing otherwise. I feel better than I have done for the last 10 years.
I would look at all the treatment options but know that not everyone is suitable for every procedure, P&A is a last resort treatment when everything else fails and/or your medical team believe other options will not help. Know it’s not always easy to get referred out of area, dependent upon where you live and private treatment is expensive, unless you have health insurance but even then, my insurance company wouldn’t cough up for RST PM, thankfully my EP fought my corner with NHS. In other words it’s a really hard slog to fight for what you think you would benefit from and to find someone who will help you think through the best options and give you the time and explanation as to reasoning. All when you really are feeling least up to doing this.
If you are at the P&A stage I very much doubt that meds will help but first step would be cardioversion - that will demonstrate whether or not returning to NSR is possible, although in my 16 year journey with AF I have not been offered cardioversion once.
Do your homework, see what is available, feasible and affordable for you - it is worth looking for a private consultation at least if you can find someone.
I love my pacemaker. The Afib Carnival of drugs, cardioversions, ablations, tachycardias, bradycardias, ER visits, and feeling crummy all the time has left town. I’m free again to just live my life and feel good.
Don’t freak out. Just keep getting information and make decisions best for you.
I have permanent AF, and recently had a couple of private cardiology appointments. Firstly, I wore an ECG patch for a week. My heart rate across the whole week was an average of 81 bpm. I was told that a cardioversion would be a waste of time as I would very quickly revert to full AF. I am currently taking 1 x 120mg Diltiazem and 1 x 20mg Rivaroxaban and the cardio feels this is doing a good job in keeping the BP and HR under control. When I asked about anti-arrhythmia drugs, I was told the side effects would be worse than the benefit. I am 78, so maybe I am better off carrying on just the way I am. I have all the same breathlessness that you do, but I have learned when to slow down or stop any activity when it gets too much. Hope this helps, and good luck to you
Cat among the pigeons time here but I would like to add my two penno'rth as because we are all different these things play out differently... I am 81 in permanent AF.
I have all of your symptoms but I progressed steadily from paroxysmal to permanent AF some years ago but then started faints and blackouts (cardiac induced syncope) and got a pacemaker - result ....stabilised and on my second PM (they last 7-10 years).
I never had or was offered a cardioversion or ablation and seeing the number of people on here with repeated treatments of these and their failure to treat the long term condition I am so grateful for my pacemaker.
So, no a pacemaker will not cure AF but it will (probably) save your life and loads of heartache (!)
hello
I went through all the avenues trying to rid the AF , meds, ablation etc. then I started to get very breathless but also so light headed and feeling faint
Eventually found the fainting was heart rate going very low, but then still at other times in afib/tachycardia and heart failure permanent afib
I then had a pacemaker. Brilliant. No more fainting or lightheaded. I was going to have another ablation but it was decided no need. Of course I do still have afib but I don’t notice it now
Again I do have breathlessness, but I have had chest infection, bronchitis, pneumonia and back and balance problems so that doesn’t help
Personally I think the pacemaker was worth it. Mine is a 2 lead. My husband also has a pacemaker and he has done amazingly well with it and I’m very jealous as he has the Rolls Royce 3 lead….!!!!!
All the best
Ps - the insertion of the pacemaker was so easy the cardiologist was brilliant and talked to me all the way through and only took 20 minutes
For the long-term without intervention, it really depends on your specific case, but AF can lead to more serious issues like stroke or heart failure over time if it's not managed. The pacemaker or ablation can help control the rhythm and reduce those risks.
As for asking about a cardioversion, it could help reset your heart rhythm temporarily, but it doesn’t always last long-term. A pacemaker or ablation might offer a more lasting solution. Definitely worth discussing with your doctor to see what makes the most sense for you.
Permanent AF and A flutter but rate control reasonable but permanent erratic rhythm AF is this something you can live ? 
AF with pacemaker
recently diagnose permanent AF
AV Node ablation and still being in AF
Pacemaker and Fast Heartbeat
