Not sure that rights is the word I am looking for.The phone call from the Arythmia nurse I was dreading was postponed and scheduled for next Tues.I have decided that maybe ablation might be too big a step as I do not have any crisis episodes.In persistent AF.However my quality of life in regards to fitness is probably 1/3 of what it was.No long walks or inclines ,can't stand heat so can't enjoy life as much.It is the breathlessness & fatigue.Knocked out for half a day or even a day or more if I aim for 1/2 or 2/3 of what I used to do.
It took a year to have a failed CV and a year since my echo,10 months since 24hr monitor showed AF 95% of the time.The only medication for AF is Diltiazem but take others for BP.
A CV with Amiodorine before and after mentioned but not the best of drugs I hear.
Never been to clinic and only tests as mentioned earlier.
I am having real problems with my back at the moment.Constant pain so all the fight taken out of me at the moment.Really suspect they just want to get rid as system so overloaded.
So advice please yet again.
Thanks for all your help.
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kkatz
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Breathlessness may be due to fluid in lungs and around you heart. When my meds. via an A and E drama adjusted this my felt like a new woman.An x ray would establish this or not. Or even your GP listening to your lungs and heart.
It’s so depressing when you feel you are not receiving the help and you need which is essentially due to failings in the NHS due to the immense pressures they are currently under and not because of the staff that work there. It’s just taken me 35 minutes to get my prescription because so many were waiting but the staff managed to remain cheerful and helpful. A minor issue compared with what you are experiencing.
From what we are hearing on this forum, it sounds as though you might be an ideal candidate for a MiniMaze procedure which is currently being discussed quite a bit on the forum. It’s certainly something you should raise with the Arrhythmia Nurse on Tuesday and it would be really helpful if you could give us some feed back after the appointment. I guess in the meantime try to do everything you can to stay cool, hydrated and comfortable during this hot spell. Also, agree with 10gingercats in that there could be other health problems which are contributing and discussing this with your GP would be a good idea.
Hope Tuesday goes well, please let us know how you get on……
On Metoprolol I was breathless. Avge pulse during day 186!
1 yr 5 months asked for a cardiac specialist. I made it clear that I did want Metropolol from the beginning that it would make me breathless and did even by reducing it from 3 to 2 and then 1.
Bisoprolol only reduced heart beat by 30 beats during day.
Diltriazem reduced beat by 100 on 180mg so it was reduced to 120mg.
Hi Kkatz, For information I had two ablations, both unsuccessful, and was advised by the Cardiologist to have a pacemaker fitted with the AV node ablated too.That was 12 months ago and now back to the same level of fitness as before.
No tablets now apart from a blood thinner, tablets for other issues, but when on Bisoprolol felt very much like yourself, breathless and no energy
I have an elderly friend, now 88, who has had permanent AF for years and all he takes is warfarin. This past two years, he's lost some of his previous energy, but that is likely owing to his age rather than his AF.
You say that you've had one failed ablation, but it seems, from my reading, that two are much more likely to succeed for longer. Whether an ablation would be worthwhile is something an echocardiogram or other scan will help a cardiologist decide but if you are having the symptoms you describe, and if these are caused by the AF, then I think it will be what is offered, although waiting lists are long.
Your breathlessness and fatigue might be owing to a weakened cardiac output caused by the AF or other related causes, again, the ablation might be the answer.
I hope your phone call goes well and proves helpful.
Steve I haven't had an ablation and don't think they will offer one.As department has become more overloaded the reluctance to offer one has grown.I had a cardioversion that lasted 9 days.
Ah, sorry, I misread "CV" in your post. Poor sleep and early mornings don't help my ability to concentrate.
Given the reduced tolerance to exercise you have, I think I'd be asking what can be done to boost this, and whether an ablation wouldn't be best, as well as asking how far you should push yourself physically. It seems to me that the big question with AF is what it's doing to the heart's lower left chamber, and whether the heart is itself in good shape overall since a persistently racing heart can weaken the left ventricle and the valve, and the AF can also affect and weaken the atrium. I imagine that both these things depend upon the individual and that's why scans and cardiologists are so important.
I am lucky my heart is not consistently racing.And it is so difficult to know what it is doing without monitoring.I use a Fitbit charge which I believe is 10 points below what it is on other equipment which is when not moving.I recon goes up to 125/130 with moderate walks.If I sit & rest then down to 100/105.Resting at home when stationary probably 80 to 90.However always irregularly irregular is the term .So If I had the racing heart , dizziness I used to have when paroxysmal & after the change to persistent last year I would do anything to stop that hell.
I only had one severe attack of the kind you describe, all my others (and that's only a few) have been much milder and without any dizziness or feeling of fainting. The friend I have copes perfectly with his persistent AF but he was never diagnosed with PAF with - oddly!
I concur with Ppiman as that is the situation I find myself in. The AF has caused the left atrium to enlarge and now I need a valve repair. I had a DCCV in April (my 8th) which thankfully, has kept me in NSR so far, with Amiodarone and the difference between being in AF and not is immense........still a wee bit breathless due to the valve but not in need of an oxygen tent at the top of the stairs.
Sometimes, it may be against the grain but you really have to push to get the care you deserve.
Hi thanks for all your replies.All helpful.My question is really can I insist politely that something more be done as I feel very little has been done & they will just want to discharge me.
I was like you and teetering about ablation but I did it and so far 6 weeks on much better QOL and I don't have to get up every 2 hours for a pee.Go for it.
Well I thought a fib but I had a flutter ablation as I didn't present a fib.
You are being TOO polite. Insist, calmly and politely on an in person review / assessment by a cardiologist/ EP. No ifs or buts. Your quality of life id badly affected, your physical and mental health impaired. You can’t dictate treatment because you are not a cardiologist but you can insist on more opinions. If you are unsure you will have the confidence to do so, sit down today And write out your history of heart issues and why you want a review. Read to nurse and send to GP. Keep at it. It is worth it! Good luck.
Thankyou so helpful .Reminds me of the fight I have in me and the fight I had to get things done.For the last week I have had really bad back problems & struggle to stand up straight or walk.Constant pain takes all the fight out of you.Today or tomorrow I will do as you suggest and be prepared for Tuesday but the nurse really is a swine.After failed CV she said get my GP to do ECG & refer back and that I am lucky that they provide a telephone number to call them on.
Awful. There are more than one arrhythmia nurse in our trust - can you see if you can speak to another? There should be a patient support organisation, too.
3 Arythmia nurses and thousands of patients.Yes there is a patient liaison service.I just feel I have not had enough investigations.Maybe a stress ECG,another 24 hour or longer monitor and see an ep.I can afford some private costs but don't know this will fit in with the hospital care.Can afford about £1k.
HiWorth going to a Cardiac Specialist who is interested in your history. Can try u out on Diltiazem and a low dose of Bisoprolol which is the best for AF.
CONTROL and BALANCE OF MEDS important.
Drs cant prescribe Diltiazem. Drs dont like changing meds but tend to up them.
Been on Statinsat least 14 years now on very low dose.This is as structural.Always had a back problem but bowling & gentle excercise classes kept it at bay.I did spend a couple nights in a firmer bed last weekend.Maybe that
I’d get assertive first. Patient liaison? Speak to GP? Write to the department? My two private cardiologist appointments were not that helpful and put a dent in savings, although one did lead to an earlier NHS scan. I needed the long term tests and ongoing treatment. But if you go private ask your GP or figure out who the best local EP is and target them. My excellent NHS one does no private work.
HiThe overheating I had and the stopping whilst out walking too.
But Stroke, AF and 4 days in hospital whilst they scanned my carotid arteries showed a shadow on my THYROID.
Do get a thyroid neck scan a.s.a.p as I had a biopsy which showed I had Papillary Cancer in both lopes and 4 mths later against 1 of triage members who said that I should wait 6 months.
The surgeon operated removing thyroid and 12 lymphs on right side as right lobe was much more affected. Hard to see on left.
Caught it in time as 2 lymph were affected.
I declined RADIO ACTIVE IODINE and being in SUPPRESSION. Being in suppression with an overdose of synthetic hormones.
Surgeon & I agree that 2.0-3.0TSH.
I am now 73 years, in NZ
Take 125mg Synthroid daily between 5-7am
Then 120mg Diltriazem at least 1 hour later
1 x 110mg PRADAXA (thinner) 1/2 hr later
Take 2.5 Bisoprolol about 7pm
1 antibiotic after Johnson & Johnson mesh removed
I have arvastatin 10mg
1 x 110mg PRADAXA
My regime.
2 years of yearly neck scans . Low risk.
New reviews show that suppression is NOT required as is RADIO ACTIVE IODINE with LOW RISK patients.
In the last 2 months the Dr says the rapid persistent AF has changed and controlled to 77 and night 48. BP123/72.
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Do you have PACS and AFib?
heart rate up?
AF FOR 24/7 
Persistent AF
