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Saw my EP last Thurday

Beancounter profile image
BeancounterVolunteer
69 Replies

Sorry for the long post here, but a lot to say

I saw my EP last Thursday, which is the first time because up until now I have seen a registrar each time I went, and he was very pleasant, and as he read my notes, I said persistent asymptomatic AF, he looked and said “how do you know you are asymptompatic” which to be honest knocked me back, so I said well I get no episodes, and generally manage to get on with my very busy life, and he said “Breathlessness?” I said yes, especially when walking up hills, and he asked “Exercise?” and I said I used to play badminton for two hours twice (sometimes 3 times) a week, but now that was much harder and I ran out of breath very early on. He also was worried about my sleep apnea, beacuse for the last couple of years I get that at least twice a week.

He said, that in persistent AF the BEST I can expect is that the heart is working at 70% normal, that’s because the Ventricles are simply not getting the right signals to pump properly. So it’s hardly surprising that I feel so tired (or all of us)

He then looked at my echocardiogram from nearly 18 months ago now and said “That’s a large enlargement of the left Atria, and I wouldn’t be surprised if it wasn’t even bigger now” I’m going to book you in for another to check, and also I want you to wear a 24 hours halter and do the things that make you breathless. He said, I think you may be shocked by seeing what your heart rate is doing when this happens, and at night your heart might be getting very slow, which does not help the sleep apnea”

I have to admit to being more than a bit taken aback, I have been merrily coasting along thinking I was one of the lucky ones. But he explained that I have simply got used to being in AF and I literally might not remember what it’s like to be in NSR.

OK options, well he mentioned 2, Amiodarone for 6 months and then a CV, but he’s not a fan due to the potential side effects and he says, it only tells us you can go back into NSR it won’t keep you there. Or surgical ablation, he said catheter ablation will almost certainly not work for me, having been persistent too long and surgical has a higher rate of success (?) and they would do a left atrial appendage exclusion at the same time to reduce my risk of stroke.

So I go back in December and he will chat over this again, I am still a little stunned so forgive me and not sure what to think, I will probably seek a second opinion, but my EP is highly regarded and likely to be right. So it looks like the Beancounter may have to have an ablation after all, but the more challenging thoracoscopic ablation, a joint operation between the Cardiologist and the EPs. Haven’t yet discussed if this will be “mini Maze” or another form, and I am very much still learning about this.

So this time, be well Ian.

Ian

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69 Replies
dedeottie profile image
dedeottie

You really do sound in shock and I am not surprised as it is a lot to take in all at once. Looking on the brighter side, sometimes it is good to have our options limited and spelt out for us as otherwise we can dither indefinitely I know I do. You are always here supporting us through our bad times so I hope we can be of some help to you now. You will have even more experiences to pass on to us as well ( just to be selfish!). X

rosyG profile image
rosyG

I'm sure this was a bit of a shock Ian as you always seem so well- our medical lead has asked someone, who has done recent research on new work on blocking the appendage so anti-coagulation is not needed, to talk to our group in November so let me know if you want any questions put forward after doing your research on this.

I have read a bit about the surgical approach and it's supposed to be better because they can see what they are doing so good he is suggesting that. I'd wait to see what the next echo brings as it may not be as bad as he is guessing at- there may have been a slight reaction to the fact that you do know what is happening to you and we, as patients, are supposed to wait to be told???

fallingtopieces profile image
fallingtopieces

Ian, I know you thought you were plodding along fine and it probably feels you now have a spanner in the works , but I for one think it's a good thing that you are not just being left as you are without further investigation. I think you have a good EP there.

It just goes to show though, how you've got used to your 'symptoms' and no longer think of them as such. This probably goes for many of us. None of us really know how to guage what is considered 'feeling well', as it is only relative to how we're used to feeling as individuals. It's especially difficult to tell when symptoms come on slowly.

Look on the bright side. Your EP could so easily leave you as you are. He obviously wants to do his best for you whatever that turns out to be.

Pat

BobD profile image
BobDVolunteer

HI Ian. I think the operative words are oh bugger! We all carry on as best we can and such a conversation can not have been easy for you. I know you will rise again and get on top of things as you are that sort of person. We can chat at HRC, , Call me if you want to talk before.

Cheers

Bob

Finvola profile image
Finvola

This consultation must have been a real shock when you felt you were doing so well, Ian. You and Bob were the first responders to my panic at diagnosis and I well remember your kindness and advice then with the phrase 'knowledge is power'.

It will take time to work through all the information you have been given - well done that EP, he sounds like he has only your well-being in mind - once the initial shock has worn off. The good news is that there is a definite plan of treatment which can improve your quality of life.

Definitely be well Ian.

Finvola

Marion62 profile image
Marion62

Hi Ian,

What a lot of info you had to take in - and no doubt a shock to hear it all. At least you can take comfort in the fact that they are going to do further tests and investigations. Thinking of you and I can only attempt to understand how you are feeling at this time.

Very interesting to read about the heart working at best at only 70% - I've never been told anything about this either. As you say. no wonder we feel so tired. You've certainly got me thinking!

Do let us know how you get on.

"Be well Ian". Sending you a big hug.

Best wishes

Marion

GivEmkeL profile image
GivEmkeL

Oh wow, Ian! That is most definitely a lot to take in all in one appointment! I do think that for many of us that we get so used to "living around our AF" that we don't even really notice that we are simply listening to our bodies and adjusting our lives to this condition. I know over the past 6 months I have had a dramatic decrease in my tolerance for exercise and that is what is driving me to become a bit more aggressive with my treatment options.

I think the good that can come from this may be that you will be able to get this treated sooner rather than later, and that your quality of life will be much improved! You have been such a wonderful help and support to many of is here, and I know that I for one want to be as supportive as I can! Even though I am relatively new to our community here, I appreciate all of your knowledge, comments, and sharing of your experience with this blasted condition. Keep us posted! Sending positive thoughts your way! - KeL

cyrilbarnes profile image
cyrilbarnes

As you have so often told us Ian “knowledge is power”. Probably the reason behind the ‘shock/horror’ at what your EP was saying is that it took you beyond your own realms of knowledge. I guess that you will be doing research yourself as well as asking those ‘in the know’ about all these new aspects to your AF. When you correlate all the info and understand it, you will again become your calm and relaxed old self and accept that what the experts are telling you is what needs to be done. When the surgery is successfully completed, I’m sure you will be passing the new knowledge you have gained onto those fortunate enough to have stumbled upon this forum. More power to your elbow then!

Cyril

cat55 profile image
cat55

Hi Ian, what a shock for you. I do hope that further investigations will help you to reach a decision on the way forward. Although fairly new on here I know you give an enormous amount of support to all who need it. May I thank you for all your support and send my best wishes to you. Kath

Jollies profile image
Jollies

Good grief. Be well, Ian x

Buffafly profile image
Buffafly

Sorry you have had bad news Ian, must surely have been a shock having the doc telling you you are ill rather than the other way around! You may not have been as lucky as you thought you were but you are certainly getting the good care you deserve. I hope the medics are able to top up your beans (sorry, couldn't resist...)

Japaholic profile image
Japaholic

Best of luck mr bean counter, my thoughts and prayers are with you

Mamamarilyn profile image
Mamamarilyn

Once a Beancounter, always a Beancounter! Would like to add my gratitude to comments already made, you are a rock. Despite your meeting with the EP and the unexpected outcome, you will still be a rock, both to yourself and others.

And I hope we can all be a rock for you!

Hugs

Marilyn

Tobw profile image
Tobw

Given your persona on here and the calm and reasoned advice you give to all and sundry, I'm very surprised to read this Ian, so I can only imagine how you must have felt.

Although I take on board what you say about the EP you saw, I think you would be right to seek a second opinion because I presume you were told something different by someone else to make you adopt the attitude you had?

Best of luck anyway.

barnes12 profile image
barnes12 in reply to Tobw

Here here we are here for you just like you are always here for us karen x

Rellim296 profile image
Rellim296

So sorry to hear Ian that the carpet has been somewhat pulled out from under your feet. No doubt it will all sink in over the next weeks and tests will paint a clearer picture. And a second opinion. It is all progress and whilst you've been on a plateau that seemed comfortable enough, there's now a bit of a ladder to climb to new heights. I know it's a big hurdle, but closing the atrial appendage has always sounded like a shrewd move to me.

All the best. Time for a few extra treats!

CDreamer profile image
CDreamer

Just like to add to the comments about what a great support you are to others so here we all are for you. We may not have your clarity of phrase but we all do our best. And maybe that is part of this for you? Loss of clarity? Shock paralysizes, we are just unable to respond because we loose clarity, so well done you for posting as I am sure part of the value of this forum is that one can put thoughts in cyberspace which helps us to process our experiences, feelings and thoughts and make sense out of them.

Having this wonderful bunch to listen is also very supportive!

One of the things I have found most difficult to deal with is that we are given this detailed information and then nothing much happens for weeks or months so we have too much time to fret. You have good friends here so be the one who leans on us for a change, ask, moan or do whatever you need to do.

Bit of distraction can help too....... Go well.

iris1205 profile image
iris1205

Oh Ian, I am so sorry to hear this news. No doubt you will come through the eventual outcome with flying colors due to your perennial positive and calm attitude but I'm sure this one has thrown you for a loop.

I am extremely impressed by your wisdom in knowing when to post for yourself as well. Everyone here will undoubedly be at your side. Do continue to keep us posted - and so well informed as you usually do.

Take extra good care.

Nan1 profile image
Nan1

So sorry to read your post this morning Ian. You are such a support to everyone. It is easy to forget that you also have your problems. I wish you well. Susan

AnticoagulateNow profile image
AnticoagulateNow

It's all been said. Good luck Ian.

Frances123 profile image
Frances123

Hi Ian

Not what you wanted to hear but at least you know now and can decide which is the best option for you. Can't help thinking what you would have been like if all this time you had sat in a chair worrying and doing nothing all day and not got on with life. Once it has sunk in and you go back December I am sure you will know what you want to do or try and like the Phoenix you will rise.

Be well Ian.

Love Frances

Yack profile image
Yack

Hello Ian: everything has already been said, but just wanted to add that I'm thinking of you. You're such a strong character that I know you'll cope, but however strong you are it's not good news to have a conversation such as you had with your EP. Very best wishes. Kay

kindred profile image
kindred

Hi Ian,

May I add my commiserations to those posted already? It's understandably quite a shock for you after believing that everything was under control for such a long time. My question is why it has taken 18 months for the expert to interpret your echo? What were the registrars doing when you saw them during that time?

I wish you well, and improved health over the coming months. x

Hi Ian, everybody's said everything I want to say but just to say it again, you've helped all of us so I hope we can help you - it's obviously been a big shock, but in asking the questions he did you can see what a good EP he is, and at least he's recognised that the status quo wasn't as good for you as you'd thought. I don't know anything about surgical ablation, but it sounds like a bigger operation. I'm sure you of all people will make sure you read up everything you can on it. Sending big hugs - take care. I think it's a positive - a move by someone to really make your life better. Just wishing you all the best.

Lis

Enjoy profile image
Enjoy

Have included you in my prayers Ian. Hope they get answered and you receive some more positive news.

Jenbo6 profile image
Jenbo6

Oh Ian. You poor thing. I have always taken such comfort from your replies to people's posts. You come across as such a caring, kind and knowledgeable man and now you have this bombshell to deal with. Hopefully you will get the reassurance and kindness from us all out here in AF happy land to help you through. Good luck. Jenny

jeanjeannie50 profile image
jeanjeannie50

Hi Ian - I really feel for you right now. What a shock to be told that news out of the blue when you thought you were coping so well. You have probably read the recent posts on here regarding other members of this forum who have an enlarged left atria. At least you can draw a bit of comfort from the fact that you are not alone with your diagnosis.

I have a friend who has the same thing and she was poised to have the same procedure that you mention, but for some reason her EP decided not to go ahead, but keep an eye on what was happening for a while.

You give so much knowledgeable, kind and caring support to others on this site. Please know that we are all here to support you now.

Big hug.

Jean

I wish you well soon and all goes well for you

kernow43 profile image
kernow43

All been said far better than I could express,

Best wishes

Ray

davegm profile image
davegm

I would like to echo all the above comments.

Wishing you all the best

Dave

souljacs4 profile image
souljacs4

I am sure you were stunned. but It sounds as if you have a really good EP there who is now going to keep an eye on you. he sounds positive about your options stay strong.

excalibur profile image
excalibur

Ian,

We've not met, but from your posts you seem to have been in a similar situation to me - I've had AF for 14 years, initially with dilated cardiomyopathy, but after successive cardioversions and treatment with Amiodarone that worked for several years, I'm in permanent/persistent AF and not sure whether to accept this or look at options to get back in NSR.

I think your EP is right in rejecting Amiodarone - it worked for me fror some years but then the side effects meant that I had to stop taking it and the AF returned, so it's not a permanent option.

The issues for me in choosing not to have an ablation so far have been:

- Does staying in permanent AF affect my life expectancy?. Several cardiologists that I've spoken with say there is no evidence either way

- Will it affect my quality of life? So far it hasn't - I'm still able to do more or less anything I want to - but I do accept that I am probably a little more breathless when exercising than when in NSR and things may get worse in the future

- What's the chance of success from a procedure (e.g. ablation) and more importantly what's the chance of actually being worse off. I originally had a forecast of 30% chance of success and 10% chance of being worse off, which is why I elected not to have one

You mention that your heart is possibly only working at 70% efficiency. Do you know your ejection fraction? My cardiologist at Harefield said that if it was over 50% then that was reasonable. I think athletes can get 70% but that's exceptional.

Also you mentioned that you had an enlarged atria. I had this as well originally, but with drugs and exercise it reduced to a near normal size, so that on my last echo the technician didn't see anything abnormal.

What was suggested by my doctor was to do a baseline echo to understand what the current funtion is (ideally I this should include the measurement of the atria size and the ejection fraction as as well as valve function etc). Then at least you have something to refer back to in the future if you feel things are getting worse.

Don't know if any of this helps, but I'd be very interested to see how things progress for you as it might well cause me to have a rethink on what I should do.

Hope things go well for you and you find a way forward that you're happy with

lance

Beancounter profile image
BeancounterVolunteer in reply to excalibur

Hi Lance

I so agree with all these points

Does it affect my quality of life?, well on Wednesday I would have said No, but I have now been made to think what would it be like to be in NSR how much difference would it make?

Totally agree about the ejection fraction, I forgot to ask on the day, may even ring and ask him

And I too have been told, once even publically in a national conference, that persistent AF will not effect life expectancy, but some do say it does, so this is a confusion.

And then those stats, look this is VERY early in my journey, my investigations so far tell me cathater ablation probably 20% at best for me as I have been in persistent for so long, at that success rate I can see no point, but surgical ablation is up in the 80% potentially plus, which is what makes me stop and think. It's still a relatively new procedure, and not widely carried out certainly as a stand alone for AF usually done if the patient has other heart problems, but increasingly as a stand alone in some centres. Complications are potentially more I understand although different to the catheter ablation, and more around the fact they have to collapse the lung and it's a GA with 4 to 5 days in Hospital initial recovery and around 3 weeks afterwards of home based care.

I am with you on the baseline, that will be the echo from 18 months ago, which is why I am so interested in what it is now.

(And I am at Harefield like you, where I am told they carry out more catheter ablations for AF than any other centre in the country, which helps the confidence)

Be well

Ian

fallingtopieces profile image
fallingtopieces in reply to Beancounter

I'm at Harefield too. My EP is Wajid Hussain. I know I'm no different to any other patient but I always ask to be seen by him rather than one of his team even if I wait longer. I think continuity is important.

Pat.

farmerwalt profile image
farmerwalt in reply to Beancounter

Hi Ian,

I'm another one like Lance,(see my response to him, above).

I can appreciate how you are feeling. I remember being told, when I was 30, following an ecg, "it's what we would expect from someone in their 50's with coronary artery disease". The GP wasn't very good at interpreting ecg's since I don't have coronary artery disease. However it was like getting hit with "a ton of bricks" at the time. I now know, thanks to the forum and the AFA patients day that it was the AF and heartblock. The first I knew I had dilated cardiomyopathy was when my cardio referred me for genetic testing to see if my DC was due to a faulty gene and was also sent to see "The Heart Failure Nurse". So yes, it was abit of a shock finding out that way.

So, I do sympathise with you and would be very interested in hearing the results of the surgical procedure if you go ahead.

Wishing you all the best and hope things go well for you.

Walter.

farmerwalt profile image
farmerwalt in reply to excalibur

Hi lance,

I'm another one like you. Dilated Cardiomyopathy, some heart failure and Left Bundle Branch Block and persistent/permanent AF. Got the same as you from EP - Ablation success rate would be very low and risks very high, so not an option.

Was interested in your comments about the drug treatment to reduce atrium size. What was the drug please?

Walter

excalibur profile image
excalibur in reply to farmerwalt

Hi Walter. The drugs were just normal heart ones - I think then I was on Ramipril, Atenolol, Frusemide and Warfarin. Later the Frusemide was stopped and I was Amiodarone but by then the dilation had significantly reduced.

I think that the exercise was the key in addition to the drugs. Originally I was treated as if I had had a heart attack and was on a cardio rehab programme for 8 weeks. Then I started going to the gym 3-4 times a week to do moderate exercise.

My cardiologist at Harefiels said that from his experience of DCM where the dilation was less than 50% then the heart could recover with drugs and exercise. Where it was greater than 50% then it was less likely to recover and the only "cure" then was a transplant.

Does this help?

lance

farmerwalt profile image
farmerwalt in reply to excalibur

Hi Lance,

Thanks for the reply. Was on Ramipril years ago but didn't agree with me. Was prescribed Frusemide, or Furosimide as it's now called, but don't take it. Very very slight ankle swelling by the end of the day but don't reckon it's a problem. Quizzed the cardio about the fact that long term use causes kidney damage. His reply was that "it wasn't really a problem since most heart patients don't live long enough for it to cause problems" Didn't like his reply so stopped taking it. Having had several TIA's, the warfarin is not a problem. Want to minimise the risk of any more. Only other ones I am on are Isosorbide Mononitrate, vaso-dilator, and Ubiquinol,(CoQ10).

Reckon I get plenty of exercise. Just spent today up and down ladders, shovelling 1 tonne of sand and clearing up the farm-yard. That's a typical day, so, as I say plenty of exercise.

Saw the EP in May and had some more tests done. Unfortunately the return visit is not until next February, so got to wait until then to see what he says.

As Ian, BobD and a few others have said we just try to ignore the AF and get on with life. Although as Ian found to his horror, we do get the occasional shock when we find out that things are progressing on the downward slope when we think we are doing just fine. I am certainly very interested in finding out how successful his surgical procedure is if he goes ahead.

Take care

Walter.

fuzzflyer profile image
fuzzflyer in reply to excalibur

Very wise words of wisdom.

kakapo profile image
kakapo

Hi Ian.

Sounds like you're about to start on another one of life's adventures. Your AF Seems to have stayed pretty much the same over the years but treatments have moved on. Having a major op is a big decision that only you can make and I can only offer you my support not my advice. Yesterday I spent around two hours carrying paving slabs up a muddy track in the rain for a conservation project I volunteer with. I am now four months post ablation and six weeks post my heart attack, it was a cold miserable day and I enjoyed every minute of it. Without your support and the support of others on this site I do not believe I would have got their. Good luck.

reedman profile image
reedman

"Saw my EP last Thursday" ...sounds like an opening line to a blues toon! Bit of a shock Ian. All I can say has already been said so I would just like to express my thanks to you for the sound advice you have given me and others on this site. Interesting question though, "how do you know you are asymptomatic" when in persistent AF. I'm sure you will bounce back Ian, life has a habit of taking us by surprise from time to time. I learnt in the military a long long time ago "just keep putting one foot in front of the other one and you'll get there". My best wishes to you.

George

Beancounter profile image
BeancounterVolunteer in reply to reedman

LOL reedman, a talented musician like you must surely know BB King's "Woke up this morning"

So here here the new lyrics.

Saw the EP last Thursday

He rocked my world

Saw the EP last Thursday

He rocked my world

Now I’m learning and a thinking

But I got you all

I’m alone but with friends here

To help me through

I’m alone but with friends here

To help me through

I’ve been challenged on my thinking

And it’s getting to me.

Weeeeeeeeeellllll Baby…. Etc etc

Don’t forget the sax solo :) (or is that a clarinet?)

LOL, that made me smile a lot I really enjoyed that so thank you....

Ian

meadfoot profile image
meadfoot

No wonder you sound shocked. I was at the European Heart conference patients sessions in London last November when you asked a question about your condition and was told you are a "lucky b-----r".

Sorry to hear you have a less good diagnosis. Non the less there is a good treatment on offer for you.

Lots for you to think about. No doubt you will research it thoroughly. Thanks for your posts and support on this site ongoing. Its our turn to support you now.

Dee.

cbsrbpm profile image
cbsrbpm

Hi Ian, sorry your news was not what you were expecting but it sounds to me like you have a very good EP who has your best interest at heart. It has been your posts that have kept me positive over the last few months (in persistent AF myself). I think we do get used to being in AF and after a time we think we are doing fine but we obviously are not and we forget how it feels to be 100%. I am sure your EP is going to work to get you back to 100%, just keep positive in the meantime and you will soon be posting how well you feel again. Good luck

Brenda

Hi Ian,

l am glad you listened to me at long last about seeing an EP...

You were convinced you didn't have a problem and you were lucky or a "lucky bugger" as you were told....

Maybe now you may just may stop burying your head in the sand and start to practice what you preach...

How many cigs a day is it 60/90 plus the biscuits and the coca cola ?....

You won't listen to me so maybe you will listen to all the folk on here who care about you also...

You know full well you will get through this and thank your lucky stars that you have at long last faced reality about this devious,mongrel no winners condition...

You will probably never speak to me again after this,but l care about you as do many others....

P$ glorious weather here just going for a swim.....Carol....

Barb1 profile image
Barb1

Yes, what a shock for you. It is amazing what the body gets 'used' to and we then accept it as normal. I am very interested in your research into surgical ablation and occlusion. I am awaiting for the clot in my appendage to be absorbed, so that I can have my 4th catheter ablation, after about 6 years in AF (with about 14 mths in SR). My EP is happy to do this 4th one and says that anything else is too invasive at my 'young' age (61!)

Sweetsugar40 profile image
Sweetsugar40

Hi Ian

Both you and Bob have been supporting everyone on here. I pray you will be fine we all need people like you on here. And look at in in a positive way that at least your EP has said he can improve your condition... This is how I look at things now with everyone's help on here. Good luck and I wish you all the best, oh and thank you for all your support you gave me when I first found this sight and did not know what was happening to me. I don't know if you remember but it was last year I got told after 2 episodes that I have Proximal AF. And we had to cancel my holiday to Florida (as we go every year) I thought I would never be able to go anywhere every again and do anything, I use to cry all the time and was getting on the verge of depression. But almost a year later and I have managed to get thought my sons wedding (both English and Indian) plus I am here in Florida on holiday at the moment. My first holiday after I thought I could not get on a flight. So thank you for your support you gave me. Now it's your turn and like everyone on here we are here for you :) good luck Ian

Regards

Chan

Hi Ian, How very disturbing for you. Very interested to read your post though & it must make you wonder if things would have been different if you had seen the EP himself in the first instance.

Fortunately you are already quite well informed re left atrial appendage occlusion/ mini maze etc. If you haven't already seen it i would recommend that you go to Mellanie True Hills website. She is the founder & CEO of StopAfib.org & an advocate of the mini maze procedure which she underwent a few years back.

We will all be looking forward to hear how you get on. You know what agreat deal of support you have from the members of this forum.

Sandra

elmbury profile image
elmbury

Now I don't want to go against what any medical professional said, but here are some facts that applied to me. I have always recorded my cycling times for a couple of 'time-trial' routes of about 10 miles I cycle from my house. Since I went into permanent AF I have recorded a FASTER best time over one of these routes. I was slightly thinner, but not that much, and I was also slightly older (mid-fifties), so that should balance it out, yet I knocked 30 seconds off my best time. The route had some smallish hills but was mainly flat and that was the reason I was faster around it. Over prolonged hills AF definitely takes its toll on me (you may differ) as it affects me when I would normally max out my heart-beat, as there is what I estimate to be a 20% shortfall in getting the oxygen around. Everyone with AF is different - so far my faster, irregular heartbeat when exercising is often equal to a normal one, and at rest I notice no difference.

Remember you are an individual, and are often the best person to know how you are.

MarkS profile image
MarkS

Hi Ian, I'm very sorry to hear that, it must have been quite a shock when you think you're doing well and get a sharp reminder. I had a similar shock when I was told by RS that I was at 80% AF (I thought it was only 33%) and heading for permanent fast.

You could consider the FIRM ablation which I understand has particularly good results with permament AF. However I'm not sure of anyone does it over here yet. A second opinion is in order I think, ideally from RS unless he was the first opinion!

Mark

Beancounter profile image
BeancounterVolunteer in reply to MarkS

Your read my mind re second opinion Mark :)

Re FIRM, it was huge in 2012, and supposed to be the next big thing, but since then almost no data and no real feedback I understand, so the jury appears to still be out on it.

Thanks for the message

Ian

in reply to Beancounter

Well it was the advice you gave me, was it not!!

John

Annaelizabeth profile image
Annaelizabeth

Oh rats! Another hill to climb, metaphorically and physically. But you will do it, you have no option and the new knowledge you will glean along the way will all be grist to the mill, and as always, with your generosity of sharing, of enormous benefit to us all. Anna

Rufus_4 profile image
Rufus_4

Be well and take care of yourself. We're all thinking of you

jan-ran profile image
jan-ran

I echo everything everyone has already said, beancounter. You take care and keep us fully informed. Prayers and a hug.

JanR

Bryonny profile image
Bryonny

Dear Ian, so sorry to read your latest news. Must have been such a shock to receive the feedback you got from your EP. I really wish you well as you explore your options and I hope you find accessing the information and support you need is straight forward. You have shared many wise and reassuring messages with others; from the posts I have read there are many members who are thinking of you and wishing you well, I can only endorse those good wishes.

Ang3lc4ts profile image
Ang3lc4ts

Thinking of you Ian, all has been said previously said. All I can say is you will get through this and we are all here for you as you are for us. Angel blessings.

Di

dayday profile image
dayday

Sorry to hear your news Ian. I echo every thing that has been said by your forum friends.

Good luck Ian, you are in my prayers for good health.

David

wpw62 profile image
wpw62

Ian I wish had had the same way with words that you do. You are so supportive and informative when we need it. Can only offer my support and let you know we are all rooting for you. Sending positive thoughts your way. Be strong, be healthy and lean on us. Cathy

David21 profile image
David21

Really sorry to hear this. You give so much time on this forum to others and now it is yourself who needs the support. One message is: The Registrar did not pick this up - where possible one needs to see the main man and sometimes it may be necessary to pay privately to do this !! I have heard so many other examples of this. Registrars sometimes just do not have the experience.

May I wish you all the very best

Kimmieblue profile image
Kimmieblue

Hi Ian

It's all been said but just wanted to add that you are an inspiration on this site and so knowledgeable. You have given great advice and been a real support to most people here, anyway all the very, very best going forward. X

Terjo profile image
Terjo

Keep going Ian thanks for all your support .Be well. Terry

lingooz profile image
lingooz

sure you are shocked, we are all here for you , as you are always for us KEEP WELL !!!!!

Really feel for you Ian.....the reaction from the folks in the forum shows just how grateful we are for the help you have given to countless others.....now it's your turn to receive a little TLC! You WILL bounce back because you could not be in better hands.

Be well Ian....

John

Thomas45 profile image
Thomas45

I get breathless when walking uphill, and after hard work, like the gardening I've done this afternoon. I put it down to Polymyalgia which I've had since June 1st 2013, because I can't remember being short of breath before then. I have chronic asthma but it's not an asthma type of breathlessness.

Hi Beancounter

I have had no AF episodes for 6 months. However, up to a month ago I was still breathless going up smallish hills (wouldn't attempt steep ones), stopped playing tennis (EP's suggestion) and anyway found it hard work, concerned I was suffering from sleep apnea - wore a test machine for one night and told no apnea.

I have been following a programme of testing various lifestyle issues. About 2 months ago, I reduced sugar intake by say 75%. A month ago (after a lifetime of loving bread, cereals, porridge) I decided to cut out 90%+ of gluten/cereals.

The result: I felt better on day 2 and wouldn't go back. No breathlessness, no waking up in the night in a sweat with raised pulse, no feeling I need more air in the bedroom. I think I could do more exercise but don't want to push it; just enjoying the 'normal feeling' again.

Try it for a week, no change go back to how you were. I have experienced no downside yet. Initially, finding substitutes is tough but you can find Buckwheat bread (the gallettes in France are also Buckwheat I believe) or Tapioca based bread.

The explanation: I think it is that in my case the AF is triggered by the Vagal nerve which is connected to your digestive system. Reduce the load on your digestive system and Hey Presto the heart gets a boost.

Hope this helps and best wishes.

Beancounter profile image
BeancounterVolunteer in reply to

Thanks Orchardworker, but of course in my case I am in 24hr AF, persistent, non stop, so triggers are not something I have to worry about too much.

However I have no doubt you are right that food plays a part in our overall health, but I suspect whatever diet I went on it would not kick me back into NSR. Having said that if the operation is necessary, I also have no doubt that I need to lose a fair bit of weight to make that operation safer, and today I unpacked my new juicer which I intend intitially at least to replace two meals a day with so I will keep you informed.

Thanks for the message

Ian

Sorry Beancounter, back from holiday in the early hours this morning + dentist today = earlier brain dead than the usual 9pm!

Re operation preparation, I would be taking a daily dose of high Vit C like Altrient C nearer the time.

SRMGrandma profile image
SRMGrandmaVolunteer

Oh my goodness, Ian ! I have not been on here for a while and just happened to see this today. Sorry to hear your news. Of course you must be reeling! I am praying that all goes smoothly for you with your surgery. We are your old friends here and we are here to send love and support. Be well, friend.

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