Hi, anyone on here who is back to a reasonable pre AF lifestyle?
I had two isolated incidents of AF a few years ago, but suddenly woke up in April with fully blown 24/7 AF and it has changed my life beyond description. I previously ran/walked at least 8 miles a day, had two time consuming businesses, frequently looked after two toddler grandchildren and was very fit and healthy. Now, two failed electroversion procedures later and constant medication, ( bisoprolol/amiodarone ; whichever causes less side effects at any one time, apixaban for blood thinning, and diuretics to prevent water retention caused by my heart failure, I've been told, very nicely, that I must just live with my condition and accept it. Apparently, "If you have to have a heart condition it's the best one to have".
My GPs are excellent, as is my cardiologist, (private), in that they are very pleasant and sympathetic, but I would love to be able to go upstairs/lift my grandchildren/carry a bag of shopping/walk more than ten metres without spending half an hour getting my breath back.
Any suggestions very warmly welcomed, although I suspect that those who are symptom free no longer frequent this site by it's very nature!
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P0rtnahapp1e
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Sorry to hear that. Cardioversions rarely work for long when someone is at the persistent AF stage and they have tried to assist by giving you Amiodarone.
Is an ablation an option or does your heart failure / other condition(s) prevent this?
You could ask them to look at switching from Bisoprolol to something else to see if that makes a difference. The problem may well be that the AF itself or the heart failure is causing a lot of the problems.
Are they going to keep you on Amiodarone long term or switch you to something else or just take no rhythm control medicine (I am on Bisoprolol for arte control but nothing for rhythm control as my EP said no point in taking for no or very little effect - that was obviously just his opinion in MY case.
Thanks @PeterWh, I was changed to Amiodarone from Bisoprolol after my last cardioversion but had extreme shortness of breath and the Gp told me to switch back to the former to ascertain whether it was the condition or the medication which was causing this. The breathlessness didn't improve much but a lot of other horrible symptoms, (nausea, diarrhoea etc), lessened so I stuck to the bisoprolol.
That was about six weeks ago and as far as I know there are no follow up visits planned by either my GPs nor my cardiologist. (Up until now it's been a case of when symptoms are unbearable I ring and get an appointment, or if my heart rate goes above 170, but since these are booked up to a week in advance I'm usually feeling a bit better by the time I speak to someone, and the terror felt at 3 AM has dissipated somewhat!)
So glad to find this group. I've never heard of an ablation and it has never been offered.
Please follow BobD's advice and see your GP and insist on a referral to an EP (Electrophysiologist). They are cardiologists who specialise in arrhythmia - ie they are the electricians of the heart!!! On the AFA site filter by AF Ablation because that is the quickest was (by far) to pick up most of the EPs.
Also go to the main AFA site and look up a presentation given by Dr Mark Earley (one of Professor Schillings two No 2s) at the 2015 patient's day called Rhythm v Rate Control. rate control is very important so that in the LONG term the heart is not damaged. From what you have said I don't understand what you GP is getting at.
Yes apart from a few of us dedicated idiots most people who have successful ablations and are symptom free fade away after a short while.
My advice would be to see an electrophysiologist (EP) as they are the experts in rhythm problems. It may be that since the cardioversions were unsuccessful then ablation may not be suitable but I would explore every avenue first. Read all you can from the information and booklets on AF Association main website as knowledge is power.You can even find a list by area of EPs .
It is often said that AF won't kill you. It isn't life ending but it is life changing and learning to accept that and make the most of one's current life is important. I used to revel in hill walking in our wonderful, lake district until arthritis intervened but I still enjoy life. After three ablations I don't have AF but I do still have some other arrhythmias and have to take two meds for blood pressure which do not always make me feel like the 35 year old which my brain tells me I am despite what the mirror tells me. But, eight years on from my last ablation and five since a major cancer operation I'm still kicking a---e. Just not as hard as I used to.
You say the cardioversions failed but even if they put you back into sinus rhythm for a very short time then there is a chance an ablation would work. Then being in sinus would enable the heart to partially heal itself. That EP visit is a must!
Yes, I was fine the first time for 24 hours, (until I celebrated with half a bottle of wine!), and the second time I was very well behaved and had a glimmer of how life used to be for a whole ten days. Bliss!
Don't worry about the cardioversion failure. I only lasted 24 hours in NSR after my cardioversion but the key tings that I was told were that (a) I could be cardioverted and (b) I felt better (much) in NSR.
I feel the same so very tired all of the time I have watched various family members go off on holiday this year and would love to be able to go away but most days I am to tired to go out of the house. I have a little grandson who is 20 months old and I have to catch two busses to go and see him needless to say I can't do that with out being wiped out. I only take PIP and don't take any other medication I have just had full blood tests and they were all normal I just wish I knew what causes people with AF to have this extreme tiredness even when we are not in AF or is it just me
In essence non regular beating and poor circulation. Have you tried taking a sleep early afternoon - I do and that makes a big difference because I don't get over tired and in a vicious circle!!
Thanks PeterWh , most days I don't finish work until after 2 Pm and then nod off during The Archers 😩. On two days I work through until 5 and on those I'm absolutely shattered, unable to talk, (which my husband considers a bonus) !
A bit afraid to sleep during the day to be honest as it makes for a very long night, but was very disappointed a couple of weeks ago when I had to leave my son's wedding through exhaustion since I had been looking forward to it for so long.
What I do is adjust the time of going down anywhere from say 11:00 to 17:00 depending on how long I slept the previous night and how early I woke up, what I have been doing. I found going down too late (say 19:00) even for half an hour or so was so counter productive. I also adjust the duration and set my alarm accordingly. Sometimes I go for an 1 hour and up to say 3 hours (if awake early and slept badly).
Hi. I was in persistent and for years before the hospital put me forward for an ablation. The EP thought I was great candidate, and the first ablation lasted 6 months. The second lasted a year, and the third so far wonderful for 2 years. If you can go for ablation, do it. Changed my life altogether for the better no end .
Phil. I saw my EP one month after my ablation and he offered and I accepted going back on the waiting list for ablation no 2. However he wouldn't go ahead because of moderate to severe leakage in the tricuspid heart valve and other issues. Heart valve consultant has been doing various investigations and monitoring and see him again 1st week of September so hopefully get a way forward.
When I was having trouble getting any true sleep, I tried all tricks to get some. Then just a short time ago I was awake for more than four days and I got so depressed I had bad thoughts. I was given antidepressants and best of all sleeping tablets. The bags under the eyes are nearly gone. Good luck. x
I know from bitter family experience that private is not at all the same as best! I agree that the person you should pay to see asap is an EP, assuming your cardiologist isn't one (many people don't know the difference - cardiologist for plumbing, Electrophysiologist for electrics). Do not give up until you have tried everything, we have heard too many stories about people who have been patted on the head and told 'how lucky they are'. The time to practise acceptance is when a good modern EP has told you to.
I had a successful ablation and feel much fitter but I have to have a nap at 3pm, if not I pay for it in exhaustion after a few days so I have learned to build a 'blobout' day into holidays. Make sure it IS a nap and not a deep sleep though.
Buffafly The reason I was advised to go privately by my GP was because he felt that I would be seen within a few weeks if I went down that route whereas there was a three month wait through normal channels and I was feeling particularly Ill and very frightened. TBH I don't think it would have made a great deal of difference in my case as it's the same person who sees almost everyone from our area and it's a three hour round trip whether through the NHS or not.
Thanks for the nap advice, I always think of an old country song by Faron Young I think, in the early hours. 'It's four in the morning, and once more the dawning . . . . ' 😀
About a 10% reduction in exercise capacity can be expected if you remain in af, but with your relatively recent persistent af coupled with some heart failure which is symptomatic, you sound a prime candidate for consideration of ablation as suggested. This could restore some of your fitness, although it will probably not get back to your previous level unless you do a lot of training!
Hello there. You may want to ask your GP or cardiologist about seeing an EP and having an ablation done. I had it done on July 13th and so far I'm doing well. I had episodes of Afib off and on for twenty years, and when I did it pretty much ruined my day. I wish you the best of luck.😊
My personal experience with permanent AF since 2008 was that medication was seriously affecting my quality of life. For better or worse I decided to stick with warfarin and control my situation as best I could with diet, exercise and meditation. At 77 I will visit my daughter in Canada for a month and still ride my bike and walk. I take enzyme Q10, vitamin D, B12 and cod liver oil. As a result I feel more fulfilled and have some peace of mind and am not wasting time. I am taking risks but it will be some "black swan event" that will see us all off anyway!
I do hope you read and take in the very sound advice to find an EP. You may well find that your life as a result, becomes far more bearable. Very best wishes for the future.
Yes they are lovely people, particularly when one is going through a bad phase, just to know that there are others who understand precisely what you are feeling is a great comfort. As is the advice offered. As Monday is a Bank Holiday, Tuesday may be your better option in getting the ball rolling. In the meantime, perhaps as Bob suggested, your weekend reading should be the AFA website, get yourself aquatinted with ablations what they are, and what they hopefully can do, so you are at ease with the subject as you start the ball rolling next week. Stay in touch, as you progress you may well give others on their starting blocks the courage to move forward!
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