Lay Summary.: Just reading through the... - Atrial Fibrillati...

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Lay Summary.

38 Replies

Just reading through the Lay Summary from the Hospital regarding Ablation procedure.First paragraph reads..Developing this condition may cause significant problems,such as symptoms that affect normal day to day activities.Patients with AF also have a shorter life expectancy on average.Tablets used to try to normalize the heart rhythm rarely work well.

Can anyone throw a light onto the burning question of 'How much having AF will shorten my life expectancy... Does that mean I am not going to reach my three score and ten!!!! Carol.

38 Replies
dedeottie profile image
dedeottie

I read somewhere that all studies so far have been on patients with other medical problems and that they are hoping to have results of studies on people with lone A.F. soon. Unfortunately I can't remember where I read this. It might be wishful thinking on my part. I will of course be very interested in other answers to this question!x

Langara profile image
Langara

I will also be interested to learn of answers to this question. My initial reaction to that summary was that it was bordering on scaremongering. AF is a rogue condition. It affects us all in so many different ways and with varying severity. I have seen several reports on AF and they are often peppered with "may cause" and "could cause". There has not as yet been sufficient long term research into the condition to say categorically what is the best treatment and what can be expected.

in reply to Langara

I am only reiterating what has been stated by the Lay Summary from Liverpool heart and lung hospital ----not scaremongery....Carol..

Langara profile image
Langara in reply to

I was saying I consider the summary scaremongering - not that you are.

Thank you for your reply..l to am hoping to receive a plentitude of replys..Cx

BobD profile image
BobDVolunteer

I have never come across that statement before and in fact I'm sure that we have been told that lone AF with suitable anti-coagulation where required does not increase morbidity..

Bob

It was under the umberella of AF not lone AF.Carol xx

Rellim296 profile image
Rellim296

Come on. Life is dangerous and terminal and there's a long list of things that can kill you. Why worry if AF is going to shorten your days? Enjoy them!

RobertELee profile image
RobertELee

Most people with AF Carol are not on anti-coagulation. Are they more likely to have reduced life expectancy? Probably. But they are skewing the statistics, leading to the sort of statement you read in the Lay Summary. The smart minority on the other hand, those of us who are properly anti-coagulated (and that doesn't include aspirin!), do not represent 'average AFibbers', so relax and look forward to the Royal Telegram.......I wonder if it's a Royal Email nowadays???

Mamamarilyn profile image
Mamamarilyn

Hey Carol, I see you are still (and wisely) doing homework. My question is, who wrote this summary? If it is a national organisation, well it's quite negative. If it's the hospital's own publication, does it reflect their attitude to AF?? If so, I'd sniff around somewhere else.

"Who wants to live forever?" We do! Xx

Buffafly profile image
Buffafly

Seems the summary is trying to encourage you to have the procedure. Call me cynical but my experience has been that surgeons like to 'fix' things physically, that's just their personality. My concern would be with quality of life, short and merry would be my preference but with AF that is not easy! As for length of life, one of my family liked to quote 'A creaking door lasts the longest', I suppose on the principle that if you are regularly monitored health problems are picked up sooner. Before I was diagnosed I used to worry that I was going to die suddenly when I had ectopics, at least now I don't!

jeanjeannie50 profile image
jeanjeannie50

An interesting point, if that paragraph is indeed a fact, and one we all need to be aware of instead of burying our heads and saying, 'All will be well because I'm not going to think about that'. We shouldn't dwell on it as worry changes nothing, but certainly not ignore. I can understand that people who do not have severe AF may think this way. I once thought that way too before I had debilitating bouts of PAF for weeks on end and when these occurred could hardly walk 100yds. To start with I had bouts of PAF that lasted several hours and I quickly recovered when I went back into sinus rhythm. Then they started lasting for half to one day and made me exhausted for days afterwards. I thought that was bad and the type of PAF everyone had. Now that I have bouts that last weeks and are only cured by having a cardioversion I know better.

I guess we can only judge by our perception of AF and the way it affects us personally.

MammaCass profile image
MammaCass

My mum had AF, she lived into her 80's.

kernow43 profile image
kernow43

Well I've managed my three score and ten, the last three or four ( and probably longer) with AF, and although I can't say that life is wonderful all the time it continues to have it's highlights.

Just remember the old saying that life is a terminal disease anyway.........

Rellim296 profile image
Rellim296 in reply to kernow43

I was going to add Eat (but not cranberries or grapefruit or too much vit K) Drink (but ditto and best to omit caffeine & alcohol) and Be Merry to my comment above, but it seemed a bit sour!

reedman profile image
reedman

I'm 71 so I suppose I've had my ration? It is only a small extract from the lay summary so i'ts a bit hard to judge but it would seem to make sense that if your ticker is not working as it should then that might affect you life expectancy?

bc109 profile image
bc109

Hi Caromia,

I've had Afib for about 20 years (without anticoagulants for most of that time), and I'm now 71. So I wouldn't worry too much about life expectancy. I suspect that there are others much older than me on this forum.

Best wishes,

Mike.

BobD profile image
BobDVolunteer

The best solution for a long life is to pick parents with long life genes. O K so my Mother died at 67due to cancer but my Father, his father and his father were into the nineties and my Mother's mother was over 100. I told my wife that should I ever become reliant on a machine or taking sustenance from a bottle she should turn off the machine.-- Bitch turned the TV off and nicked my Scotch. Happy Mothers Day to all Mums wherever you are.

Bob

Rellim296 profile image
Rellim296 in reply to BobD

Thanks, Bob. Are you two often heading for a divorce, like we so frequently are? Others think we are the least likely couple to split, but my husband is only almost perfect ....

But there's hope for me yet. Immediate family not long livers, grannies better, but I have a great great great granny, born 1753, aged 98 on the 1851 census.

Offcut profile image
Offcut

In the Middle ages life expectancy was 35 years for the Masses. We all have a lifes end date but it does not always follow that a condition can shorten it.

My father had AF and leukaemia and passed at the age of 82 years.

iris1205 profile image
iris1205

What an unfortunate report to read! Does this hospital, by any chance do ablations?

My feeling, relative to me only, was to not use daily meds, I was on pill-in-the-pocket method. I then decided after 3 1/2 years that I didn't like the after effects of the meds and the long term effects. I then decided on the ablation.

I believe it is BobD who says this is a mongrel situation, well said. We cannot compare ourselves to others. None of us have the same factors. For two years I read up on AF and believed that all you folks with persistent or permanent AF were having the same tachycardia that I have in my intense episodes. Hence I said to myself, "stop whining" they have it worse than you. I go up to 200bpm for up to 12 hours before I convert - but not all the time. I couldn't tell if my intense palpitations were arrythmias or nerves from the rest. WE CANNOT COMPARE and there are institutions that will push meds and others the ablations, and in the middle we have the fine doctors (and I believe most are admirable) who take us individually and prescribe accordingly. Having now done both, I've read tons of material including the medical journals and they all vary in their outcomes. Find a doctor you trust, ask all your questions, and I would agree, dallying with the idea of whether we will live longer or not is creating anxiety - which will decrease your life expectancy as much as anything else. Easier said than done, we've all been there. Good discussion to raise though!

Polldoll profile image
Polldoll in reply to iris1205

It is interesting to talk to people who have experienced how debilitating AFib episodes can be . An acquaintance of mine commented that he gets it too but just coughs and ignores it and it goes away !!! Well I am the most positive thinker you can meet hence my nickname of Pollyanna , however with a racing , erratic heart rate if 250bpm for 6 , 7. Or sometimes 8 hours every other day , then every day . Coughing and ignoring it just wouldn't have cut it !!! Don't compare too much to others experiences just sift through and be sensible . I found it useful to know I wasn't being soft or imagining and exaggerating the effects . Good luck to all

lizwright profile image
lizwright

I would very much like the answer to this question which I asked a lot on diagnosis. My GP was dismissive in the extreme, the hospital didn't have any stats. My feelings are that it must impact to an extent as heart is working harder. I agree with all the comments about getting on with life and not worrying but as far as planning is concerned, might be handy to know if there are any stats.

I am 81 and have had AF for many years. Studies in the US indicate that there is no difference in life expectancy between people with AF and those with normal heart rates. That doesn't make the condition any less disruptive. I've had three ablations after age 70. The last kept me in normal rhythm for over three years.

krosmon profile image
krosmon

I'm 77 and have had Afib for the past few years. I also had one ablation and may have another one soon. But other than my ticker, I'm doing okay. I expect to be around for another 10 years or - or longer. I'm on an anti-coagulant and feel safer re strokes than I would without it, and my cardiologist is considered one of the best in the business so I feel between him and me, I should last a long, long time. Forget what the predictors tell you. They also say there are meds in the works that may even cure this, so gotta keep the faith.

Thank you each and everyone for your responses to my question.

All of which are factual,encouraging,witty and wise.

My own response is that I have now given up the idea of three score and ten.

Now aiming for four score and seven.

Carol...

mumknowsbest profile image
mumknowsbestVolunteer

Hi Carole

Who knows how long we may live, you might get run over by a bus. but that said I would just reiterate what has already been said is that it is a mongrel and we are all different, so we can all empathize with each other, but comparing symptoms etc really doesn't do much good.

Eileen

in reply to mumknowsbest

Hi Eileen,

Thank you for your response and I take on board what you have said but would like to reiterate I was not comparing symptoms I was stating what was written in the Lay Summary.

Carol...

Lanock profile image
Lanock

Hello everyone,

This is just a wonderful forum for all of us to share our fears and ideas about the evil AF. Having had 5 Cardioversions and only one ablation to date, I am still fighting on. and really am pleased that I have found this forum so that I can know I am not alone with my AF, Thanks to all that make comments and suggestions.

Cheers

beano2013 profile image
beano2013

Having AF is certainly something you can do without and it does put you at risk of having a stroke. However, medication and ablation can reduce that risk. Put in perspective if you smoke or are a heavy drinker you raise the risk of premature death. There is a great deal of progress being made to address both the symptoms and risk factors of AF and it would be interesting if anyone was aware of any statistics in respect of those patients who have undergone the ablation procedure successfully and what their risk factor is in comparison to those on medication only. Anyone out there who has this information?

dedeottie profile image
dedeottie in reply to beano2013

A.F. forced me to deal with certain aspects of my life that were also probably not conducive to longevity. I suspect that I am generally healthier than I was despite A.F. although it doesn't always feel that way. X

Ang3lc4ts profile image
Ang3lc4ts

Hi everyone, what an interesting subject! My mother died of cancer when she was 50, my sister died of same at 59. I am now in my 78th year and have had AF for 12 years. In November 2011 I was knocked down by a van! Lucky to be alive! So you can see, as mumknowsbest said, you could get run over!! Anyway, I would rather have good quality of life than a long disabled one. I enjoy every day and count my blessings for what I have got, do what I can and when I have bad episodes I just rest, easy peasey.

Anyway, best wishes to all, stay positive and enjoy the life you have. Angel blessings.

Ang3lc4ts

Hi Ectopic,

I always look forward to reading your responses your research is so accurate and detailed ....I am very familiar with this analytical precise line of thought with a close family member so l think I understand your logic and the way you think....I hope this makes sense and thank you...

Carol...

Hi Ectopic,

It was the Aspergers that I picked up on as I have first hand knowledge of living with the condition.....Thank you and keep well...Carol.

Loo53 profile image
Loo53

I was given the same literature from Liverpool Heart and Chest Hospital. I read it, yawned and shoved it in a folder. :-D :-D

Once read never forgotten stored away on the back of my mind just like engrams on a computer....

That post was written by myself 5 months ago a lot has happened since then...

Since then every day as events happen in my life I stop and choose meanings and interpretations that allow me to live my life ...more balanced...more peaceful...and more under control....Without any fear of the future...Carol...

Robyncarmen profile image
Robyncarmen

Hi Carol my father had AF & he just Died last year he was 90. Every one is different but thought that was a great life span. Hope it helps.

Robyncarmen profile image
Robyncarmen

Hi Carol my father had AF & he just Died last year he was 90. Every one is different but thought that was a great life span. Hope it helps.

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