Well that's it!!!

I saw my EP yesterday for a check up after my third ablation last July. My heart has been playing up every 4 to 6 weeks for years now and still does.

I must admit to being slightly shocked when he said that there was nothing more they could do for me as my rogue beats were coming from an unusual source (I wish I'd asked just where they were coming from)! He explained everything clearly and in detail which was useful and said that every once in a while they'll come across someone like me who isn't helped by ablations. In total I've had 17 hours spent on these procedures.

He talked about pace and ablate, but didn't think that was the way to go right now. I also asked about the procedure they do when they ablate the outside of the heart too and got the impression he's had experience of that and wasn't impressed.

I'm doing my best to be positive and telling myself there a lot of people with far more worse diagnosis than me, but having been in AF constantly for just over 4 weeks it's a little hard. I'm awaiting a cardioversion, which should happen sometime in the next month, but my EP has said he doesn't think it will last.

What do I do next? Do I sell my house and get something with a smaller garden. I think if I left where I've lived now for 36 years I'd be desperate to come back and regretting leaving in no time at all. I have all sorts of thoughts going through my head.

Help!!!

Jean

71 Replies

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  • Jean, I don't know how much help I can be except to sympathise and send cyber hugs. On the practical side, might it be worth a second opinion? You know your EP and know how you feel about him.

    Regarding your home - and big garden. They are part of you after so long. We have a difficult 'garden' - an acre of mountainside and all that goes with it but I couldn't leave it either. It's a big step and if there is regret now, imagine the future regrets. When my AF was bad, I hired a chap but, of course, he didn't do it right - lol! Might that be an option to enable you to enjoy what you have?

    I'm sorry you feel so down but after 4 weeks of this accursed misery, I would be screaming my head off and badgering my EP for help.

    Big hugs xx

  • Thank you Finvola. I guess in my heart I didn't think there would be anything more they could do. My daughter would have been cross too if I'd said I was going to have another ablation, she's cross I'm having another cardioversion! She works at a hospital and I'm guessing someone there has put her off cardioversions.

    My garden isn't overly big, but too much for one person - ideal for two. Last year I had a chap come in to cut a hedge, he was doing it with clippers and loppers! I got out my electric hedge cutter and told him to use that, but he didn't! Consequently he took days to do it and it cost me a lot of money. So I can understand your chap not doing yours right! Perhaps when I'm older and not driving I'll be able to afford a weekly gardener.

    I'm not in the right frame of mind for a second opinion at the moment, but who knows what's up ahead! Yes, you're right too I can't leave my home here.

    Jean

  • Sorry to hear your check up news was not what you had hoped for have the cardioversion and make decisions after that,you need time before making wrong moves.We moved house 10 years ago because of my health and increasing age thinking we would be unable to cope with our 3/4 acre garden,well now have what can only be described as a patio garden,easy to maintain but I do so miss my lovely garden,so make sure that the decision is definitely right for you.The plus point for me was a new build house not the 150year old cottage that needed continual maintenance.

    Jane

  • Hi Jane - Yes I can imagine how you must miss your garden! I've always been bit of a garden plant addict! Well it's better than being a drink one! I'll certainly take heed of your advice.

    Thank you.

    Jean

  • No chance of drink addict with AF I've given that up also.lol

  • Me too!! What a pain it all is!!

  • Oh Jean I know you were disappointed with yesterday's consultation when we text but the rawness in your post here shows just how difficult it was for you to hear. You know I really would consider a second opinion, you have nothing to loose and possibly something to gain. In all the chats we have had I have never known whether you have had an EP study. If not I think one might be useful esp in light of what your consultant said about this coming from an unusual place.

    Regarding your house well you have said it all. You love it have lived there for 36 years so perhaps you have answered your own thoughts. Suggestions of having a gardener may relief the problem. Now is not the time to make a big decision as you are still in the throws of disappointment and don't know what is best to do, so please do nothing on the house front at least until youbhavesettleld down and had your cardioversion. Nothing is spoiling by holding fire.

    This is what you would tell me as we have discussed in the past few days during my confusion about holiday letting, selling etc. Hold fire my friend it will become clear how to best proceed. Big hugs. X

  • Hi my lovely friend. I really don't know what an EP study is? So think I possible haven't had one.

    I may think of seeking a second opinion at a later date, I'm really not in the right frame of mind to do it now. I really could kick myself for not asking where the rogue pulses were coming from. Perhaps he will put it in a letter to my GP. My GP did say himself a while back that my extra beats were coming from an unusual place, so I could ask him I guess. When you're at an appointment with your EP you don't always think of the correct things to ask, not until later!!

    I value your support very much Dee, you really have been exceptionally supportive to me and I thank you for that.

    Jean

  • Don't kick yourself about not asking. I am facing the possibility of a similar diagnosis to you.

    My EP recently went to a conference in Amsterdam and he said there was consensus with other EPs that if the source is not from the pulmonary veins then its not possible to find (or its completely random).

    Sorry to hear your news.

  • That interesting Jonathon. Please let me know how you get on.

    Jean

  • Dear Jean,

    I am so sorry to hear this news.

    I am in agreement with Finvola, that it might be worth getting a second opinion.

    My best wishes to you.

    Regards

    Barry

  • Thank you Barry. Yes, at a later date when I'm in the right frame of mind I may well seek a second opinion. The other thing is some new ideas for treating AF will no doubt come to the fore over time. I almost asked my EP if there was anyone else who could possibly help me. Wish I had now.

    Jean

  • sorry to hear your news- don't do anything in haste as you may be better in familiar surroundings- if your garden is hard work perhaps you could pave a lot of it??

    Don't lose hope as there are new developments all the time.

  • Thank you Rosy, I certainly won't act in haste.

    You must have read my mind because I've been thinking of paving another area of my garden, also getting rid of some trees and beds.

    Yes, let's hope some new cure for AF will appear and it's a simple solution. I live in hope.

    Jean

  • Jean I do so feel for you and totally understand your despondency. Has your E.P. got a plan for if the catxioversion doesnt work? Are you able to control the rate with rate control meds? I often ponder what will happen to me if my dose of flecanide stops working as I cant have it increased, cant have another ablation and cant have a large dose of betablockers as I have a heartblock already showing signs of increasing due to high doses of flecanide. I also have fairly low blood pressure so even with an ordinary pacemaker betablockers may be dodgy! I suppose I would have to put my faith in the pace and ablate.

    I would put off any decisions about moving until you have forced your E.P. into voicing a future plan of action. Many people on here have said that pace and ablate has changed their lives for the better. Personally I know thayI could put up with A.F. if the rate were to be lowish and therefore some of the symptoms were less for example breathlessness on any sort of exertion.

    I hope you get some answers soon Jean. Do keep us up to date and moan away to your hearts(groan) content.

    Best wishes

    Jane

  • Thanks for your reply Jane. I'm on 2 x 100mg of Flec and 2 x 12.5 of Metoprolol which at the moment is keeping my pulse down to about 100, it's normally 62. When I asked if I could take more Flec to try and bring my heart rate down my EP said no and explained the serious effect that Flec can have on the heart. In fact I think he'd be happier if I were on 2 x 50mg.

    I think my body may be getting used to the AF a little now. I only feel the effects of it when rushing, walking up a hill or exerting myself. In fact when I walked up a hill last week it wore me out so much I went home and slept.

    I really don't know that I'll be seeing my EP again, that's another question I forgot to ask.

    Jean

  • Jean, I'd go for a 2nd opinion if at all possible. Also, have they exhausted all the drug options, and how many have they tried you on. They had a terrible time getting me on the right one but did eventually (so far so good anyhow, and it's been a few years). As I mentioned in another post, in all I had 5 or 6 different ones before hitting the right one.

    Hope you get a solution.

    Koll

  • Thanks for your reply Koll I'm glad you were able to find a drug that suits you. What do you take now?

    Yes, going for a second opinion is something I will be thinking of in the future. I have tried quite a few drugs, but did ask my EP if there was anything else I could try and mentioned Disopyramide (spelling) which I believe a few people on this forum take, but he said it was an old drug with nasty side effects.

    I'm hoping my body may get used to constant AF and perhaps I'll end up one of those people who don't know they have it! Think I'm going to Google AF and strange source of beats and see what I can find.

    I'll never give up looking for a cure, that's one thing for sure.

    Jean

  • Yes, I'm on Disopyramide. Not had any side effects I can detect at all except possibly tinnitis, not sure, could be the Apixaban. Sandra was on Diso for 12 years. One of the apparent side effects is death which hasn't happened yet 😃, but reading up on it somewhere,the data that lead to this wasn't correct, or something like that, I'm not good at detail. Thin it was banned at one point but has been unbanned.

    Sorry for typos, I'm on my ipad.

  • That's interesting, thank you. Was it that drug that totally stopped your AF? It's strange that some people with AF can be offered it, but not others!

  • Both Propafenone and Disopyramide work on me but Propafenone has side-effects for me, but I know from reading this forum that it doesn't for others. We're all different as we keep saying. Disopyramide doesn't seem to have any side-effects for me so far.

    Both will stop my arrhythmia symptoms almost totally, and it seems that nothing else will. Technically, I think I have AF but also or mainly loads of ectopics.

  • That's interesting and how lovely to be AF free with Disopyramide. Hmm may have to ask if I can at least try it at some stage.

  • Hi Jean, time for deep breaths,give yourself time to think it all through and maybe your chat with gp once letter arrives will formulate your next move,take care.

    Jo x

  • Hi

    I have a good sized garden too and know how important it is for both my well being both physical and mental. It certainly has helped me over my AF years just sitting among the greenery and wildlife. As someone else said, maybe hire a gardener with electrical tools (and preferably young and suitable eye candy!) it may help in short term while you have time to reflect. My ❤️ Goes out to you re your prognosis. I have only had one ablation, successful so far, but have started also started being treated by a recommended medical herbalist to help maintain my situation... It turns out that there are lots of herbs that can help strengthen the heart and help arrithmias (not necessarily cure obviously) I am finding it all very positive with helping to also help balance my thyroid and lower my BP. Just had my years check with EP and told him everything I was taking and he said it was fine with him. Do message me if interested. Just trying to help and please done think I am trying to be all hippy dippy! Stay strong and positive if you can.

    With good wishes

    Sarah

  • Morning Sarah and thanks for your reply. I wouldn't care if you were hippy, dippy if you had some advice that could help my heart. In fact where food is concerned I'm probably just a little that way myself. I certainly will private message you, thank you.

    Jean

  • Hello Jean

    I can totally relate to the feelings you must have had after your consultation. I too had a similar conversation with my then EP three years ago. Then whilst in hospital a year after he retired having my umpteenth cardioversion the duty cardiologist spoke to the new 'top man' at my hospital without my knowledge regarding my case and the ball started rolling again and I have now had 3 different Consultants, 3 more ablations and numerous cardioversions.

    I know that my condition differs significantly from you as I am not fast so much of the time and my variety of AF is Paroxysmal not continuing as long each time as yours but I think what I am trying to say is don't give up.

    I think you should urge them to do another cardioversion sooner rather than later. If they are suggesting it then they have some belief that it will give you some respite. When you are in hospital for this you can ask all the questions you forget to ask the other day. Write the questions down.

    Regarding your daughter not wanting you to have further ablations or cardioversions I again can relate to this as my very assertive daughter takes a similar attitude and furthermore she is putting a lot of pressure on me to take the pace and ablate option. Right now this is not an option I want to take due to my allergies so I am having to explain my emotions. Luckily my wife supports my views.

    The thing is that however well intentioned our offspring are they do not have to live with AF first hand and do not know the stress and anguish it causes us suffers mentally.

    Regarding your garden do not move. If you cannot manage it, if you can afford it, get it redesigned for visual impact and low maintenance.

    The the cost of moving would be greater than the cost of landscaping.

    If I was as fond of my garden, as you clearly are, I would rather see it as a jungle than move and wild horses would have to drag me away.

    If talking when you have your cardioversion is not soon enough go private and get a second comprehensive opinion when you are ready to move on. (I know only too well how raw you must be right now).

    Pete

  • I guess this is a dumb question. But, what is 'pace and ablate'? Thanks. Tricia

  • 'Pace and ablate' is the procedure where they inplant a pacemaker. The pacemaker then controls your heart rate. After a few weeks when they are confident that the pacemaker is performing as required they kill (ablate) the AV node which is the part of your heart that creates the electrical inpulses that had previously controlled your heart rate.

    For Many it is a successful solution although I understand some still get the symptoms of AF.

    This is a big step and in my humble opinion needs a lot of consideration.

    I hope this explains it but you can find more details by searching the Internet.

    Pete

  • Thank you - there's so much to learn about this wretched condition. Tricia

  • Thank you Pete, I did guess that you may be the person who understands how I'm feeling the most. My AF has always been PAF too, although some of those periods can last for months if I don't have a cardioversion.

    Why do kids have to try and take over the role of parent as we get older! My youngest is really quite bossy about it all and if I don't take her advice won't talk about the situation. I really don't feel like telling her anything these days!

    I doubt I will get a chance to see my EP again, when I have my cardioversion the process will be carried out by the AF nurses.

    I will never give up seeking a cure.

    Will be interested to see how you get on and hope you too will be cured. Fingers crossed.

    Jean

  • I know that it is all raw now so maybe time for some planning.

    I agree that you never see the EP when you want to or talk to him/her when you want to, it is so frustrating. However when you are in hospital for the cardioversion there will be doctor on duty and you have every right to start asking probing questions and to not leave until you get some answers. The EP will be in the building even if he/she is not dealing with you first hand.

    Once the dust has settled it would be a good idea to try and get a second opinion if you think you can get nothing more from your current team.

    For a consultation alone it is likely to be something in the region of £200 - £250 depending on who you choose. By buying time with them you should be able to address all your concerns and your questions. You are entitled to a copy of your notes from you current hospital so if you go that route it might be worth pursuing that too to help another professional understand.

    I don't want to give up despite all the knock backs that I have had and despite my "severely scarred" atrium.

    Regarding those in permanent AF it is quite different to those with PAF and I remember PeterWH (who seems to have left our forum) told me that once in that permanent situation it is a quite different set of feelings to those who go in and out like us.

    I totally agree regarding the offspring although my son has the completely opposite approach to my daughter (and her husband) when it comes to the 'pace and ablate' issue and says he totally understands my reluctance to go this route.

    Pete

  • Dear Jeanjeannie50, the agony comes through in your voice as I do sympathise with you thoroughly as I have agony in persistent AF ( 97 days today) and still waiting to see an EP. You are so brave, Twelve years is a long time to deal with AF. Your still being on a beta blocker and a rhythm control drug after your ablation nine months ago is difficult unless you feel better.

    I will zero in on the "unusual source." So what comes to mind is whether the EP can find this unusual source or whether the "unusual source" is the problem and they can't ablate there?

    The latest mapping technique appears to be the CardioInsight Noninvasive 3D Mapping System (ECGI) which was just approved in the States in July 2016 and is not yet in Canada. So, if it's a problem of finding this source, maybe this vest can - a 252-electrode sensor vest. I doubt your hospital has it.

    You are near Bordeaux, France, so if you have the money, you might consider the clinic run by Dr. Michele Haissaguerre, the inventor of the ablation technique, for an opinion, and I believe he was influential in developing this vest.

    Ablating your sinus node is a drastic step; I'm glad your EP is saying it is not the way to go.

    Good luck in your search for the latest advancements in AF that will be able to accommodate you.

  • Thanks for your interesting advice Cuore. I certainly will investigate all that you have suggested. I really must try and find out about where this unusual source that my rogue beats are coming from. I think I'll ring my AF nurse and ask her to find out, there your message has just given me that idea, so thank you.

    Jean

  • Don't do anything quickly, think about alternatives. What about having the garden made easier e.g. Raised beds, more grass, wild area... Can you take in a lodger? Part of the deal could be gardening! I would hate to have to give up my garden. Sorry to hear that nothing else can be done re your heart but at least you won't have the worry of appointments. Are there any more medications you could try?

  • I talked to my EP about other medications, but I have already tried all the ones that he would recommend. Yes, I will probably get rid of some borders in my garden and incorporate them in the lawn. I'm thinking of getting rid of hedges and having fences too, hedges are the things I find most difficult to keep under control. I don't mind cutting them, but hate the picking up. I had a school lad to help me last year, got him on the recommendation of a notice board. As soon as he came he told me about how he'd suffered a few years ago with chronic fatigue - I'll say no more!

    Thank you for your advice.

    Jean

  • So sorry to read your post Jean, you have had a very long and up and down journey. Take your time for things to settle, accepting that sort of news is not going to happen overnight.

    My husband and I faced a similar dilemma regarding house and garden, although ours is quite small. I EVENTUALLY found what I call 'proper' gardeners - not "garden landscapers" who don't want to do anything other than cut grass/hedges. We have a contract for them to come in 4 times a year for 4-6 hours to help maintain the garden but also develop it. I am so over the moon about it as they are intelligent, knowledgeable and hard working and not too expensive. They have been twice now and suddenly everything is not quite so overwhelming. They do exist - but not easy to find. Not too sure how far they travel as they are based in East Devon. I know you are not too far from me so I am happy to PM me their contact number.

  • That sounds a good idea to get a gardener in just a few times a year. My neighbour has one so I may ask her if she would recommend him. I think I live too far from you and I'm sure your gardeners wouldn't travel over an hour each way to do a garden, but thanks for the thought.

    I will never give up looking for a cure for my heart and yes, you are right I need time to decide on my nest move. I'll see what my EP says in his letter to my GP and then talk to my GP and see if he has any suggestions.

    Thank you for your helpful advice.

    Jean

  • Jean, you must be feeling so despondent right now, I can totally understand why, on all levels. I can only agree with the others that when you feel ready get a second opinion (and go armed with as much information as you can about this unusual source). You have nothing to lose. Dare I say, don't leave it too long? If another EP (and pick the best) confirms what your current EP says, then at least then you can start planning your future and how to keep your lovely garden (one addict to another!). Thinking of you.

  • Thank you Irene, yes I will take on board your good advice. I'm wondering about the EP Sabine Ernst, think that was her name, but can't remember who it was on here that's being treated by her. I think she was trialing a new procedure.

    It's so good to talk to other garden addicts. I'm afraid I'm garden proud as well as house proud, though the house could do with a lot of refreshing, but I really can't be bothered with the upheaval. My garden now that's a different matter!

    Jean

  • So many good suggestions! Part of our 'lawn' (which is a collection of green plants that I mow and there is some grass in places) has developed a patch of rose bay willow herb which will be spectacular later. We have lesser celandines out right now and self set primroses that are being preserved. I don't cut the speedwell either. A slightly wild garden can be very pleasing - not a lot of work and butterfly friendly.

    I'd add that quite often one can come away from an appointment with the feeling that prospects are not as good as they subsequently turn out to be and the way things are now may not be how they will later feel. I hope you get a cardioversion soon and that it will be amazingly long lasting.

  • Thank you Rellim, your natural garden sounds like a lovely idea. I'm always talking about how I would love to see a garden filled with natural weeds, planted for effect. I wonder how attractive that could be?

    I'm told my cardioversion should be within the next four weeks, so hopefully that time will soon come. I still have hope that my heart may revert back to sinus rhythm on its own as it can do that some times.

    Jean

  • Reversion on its own would be perfect. But either way, may it get stuck in NSR!

    Our garden has gone its own way over the years and is not demanding. At about 2 metres high, the willow herb is quite a feature in August and September and I can claim no credit.

  • So sorry you're so downcast Jean, I am sending you big cyber hugs. Don't give up. Take some time and when you're ready get a second opinion from a different EP, they're not all the same and you may at least get a different perspective... Plus you could maybe make your garden a bit easier to handle - I am looking for ways to do that with ours because my hubby can't help any more and ours is too much for me by myself. I shall be doing a lot of mulching this year!

  • Yes, actually you're certainly right about how EP's can have a very different outlook on treatment. In fact it's really quite astonishing just how different their opinions can be! I will never give up on looking for a cure and a more natural one if the medical profession cant help.

    Thank you for your advice.

    Jean

  • Sorry to here this jean 😢 but just a thought? Have you thought about getting a second opinion? Or try a different procedure with a different EP ? Some fantastic new procedures out there now ❤️ I don't no who your under or what hospital. But I would definitely have a good look and get another opinion about this. Some hospitals use different mapping systems and can ablate in places that once was not done before. Sending big hugs to you and best wishes 💗💕X

  • Thank you Sam, yes I'll certainly be looking at what treatment other EP's can offer. Need to do a lot of research now.

    Hope you are well right now.

    Jean

  • Aww good to hear that lovely 😊 your a strong lady 😘 some fantastic stuff out there . Ime ok thank you , just off to get my blood levels checked 😬 thank you for asking 💗X

  • Aww good to hear that lovely 😊 your a strong lady 😘 some fantastic stuff out there . Ime ok thank you , just off to get my blood levels checked 😬 thank you for asking 💗X

  • I think moving house would be extra strain on your body and may just bring you other different stresses. If you have a nice home and good neighbours I would stay put and keep looking for the 'right' gardener. Here we are on Gardener Number 3 and he is much better than 1 & 2. Why leave somewhere you would be desperate to go back to. My consultant said to me there is No limit to Positivity but I can tell in your words that you like me are being tested on that one all the time. I've had to give up driving because I feel so unwell and I am getting worse. A 2nd albation in January is helping the actual episodes of AF but it almost feels like my body still want to push push push all the time. I feel really ill and toxic. In some ways its a good thing the consultant you saw said he didn't know - most consultant when they don't know something imply there must be something wrong with our mental state! I'm in a pickle with my symptoms at the moment too - I have a lot of symptoms which they cannot help me with. I know the feeling of wanting to find a cure but at the moment I would be grateful for feeling a bit more stable being able to go out and drive and live just a little. I don't go anywhere or do anything because of how I feel and yet somehow I cope but its hard isn't it? Keep positive but my advise don't give up the things you Love.

  • Hi Kate, I'm really sorry to hear how you are struggling with your health and in your place I would be wondering if it was the medication I was taking. Sometimes the side effects of them are far worse than the benefits. What pills do you take? Does your GP listen to you when you say how you are feeling and are you under an EP too.

    I've discovered with our condition that we have to let the medical profession see we are not going to be fobbed off and have opinions that we want them to take on board.

    You are right I don't think I could cope with the upheaval of moving while I have AF.

    I will certainly look for the right gardener as you suggest.

    Thank you for your advice.

    Jean

  • I take Apixiban, Bisoprolol 2.5mg but have just stopped Flecanide 2 months after Ablation. My body was sensitive to high doses of Flecanide and was on 50mg x 3 per day which sometimes needed a pocket in pill dose when AF went. AF was trying to go all the time. I have weaned myself of the Flecanide rather than stop it but in last week having stopped it all together my body is having a meltdown of symptoms. The symptoms are a bit like when I get AF and pop a pill. ie. cold shaky shivery - raw pain in heart and liver area and trembling and feeling toxic and horrible. I asked on the forum if others had a problem coming off Flecanide but the main response was NO. I can only hope I am unique and what is going on at moment will pass because it isn't much fun. I've only had one AF since the last Ablation but its trying to fire every day just being stopped by the Ablation work. The GP will listen but they all tell they cannot do anything about it.

    From my experience of AF - only since 2011 I do find it is a difficult area. Everyone likes to have a label and a reason for AF and then there are people who have it who don't even now which to me is amazing. It's a very complex area and one that is seems to me is not viewed as Life Threatening (as such) but most certainly is Life Limiting - well mine is. It's finding the balance of living with it and coping isn't it. Those of us who like to feel in control - are not longer in control. My experience has been that any amount of stress isn't good for me - because I seem to have some weird bypass of not feeling stress but my body having a stress re-action. I'd love to go away at moment and have a holiday but I'm not even up to that. Reading your words it sounded to me you were clear that seeking more help at moment isn't for you. Good Luck to both of us I think. You are not alone so good wishes that you get the balance right.

  • So sorry to hear your news. I also had my 3rd ablation 2 weeks ago and was advised that I couldn't have another one. I sold my cottage as it was far to big for me and downsized and have no regrets as I now have no garden. So seriously think about downsizing your healtcomes first

    Jen

  • Thank you for your advice Jen. Don't you miss your old house at all?

    Jean

  • Hi jean

    Did miss it at first but not now. I bought new build and love it.

    Just had letter from consultant regarding my ablation confirming what they said that I can't have another ablation. So looks like I'm stuck with this horrible AF.

    Never mind thinking positive good thing is my new house is easy to clean.

    Jen

  • I assume by ablating the outside of the heart you mean the Maze procedure. I had this during my heart bypass and it was a waste of time,

    However could I suggest you discuss having an implantable cardioverter defibrillator for AF rather than a pacemaker fitted. This allows you to give yourself a cardioversion as an when required, but the heart is still pacing itself. They are buried away on the Medtronic website as I don't think they are popular, but sounds a real possiblity for you

  • Not sure if it was the Maze procedure or not. The one I'm thinking of was carried out by a lady consultant called Sabine Ernst, or something like that and I think it was a totally new procedure. Someone on here had it done recently, but I can't remember who it was.

    My EP didn't say anything about having an implantable defibrillator and I'm wondering why now!

    Someone has sent me some natural things I can have that have really helped her and I think that may well be the way I go forward now.

    Jean

  • Oh Jean I do feel for you. Being in a very similar situation to you having 3rd ablation a couple of months ago and being told they would do no more as I too seem to be a complicated case. Take a breath and don't do anything without careful consideration. I must just say that I was in persistent AF back in 2014 and once they got the rate controlled I managed really quite well and had to feel my pulse to check if still in AF. I would ask for a medication review to try other options to reduce your rate, it sometimes takes a lot of playing around with. I hope you get plenty of respite from your cardioversion, you never know it just may keep you in sinus with the right medication. Oh and by the way, if your daughter doesn't want you to have the cardioversion why not suggest she comes to help you with the garden, lol.😂 Big hugs (())

    Brenda🐝

  • Oh that made me laugh Brenda - My daughter help me with my garden, some chance!

    I live in hope that my heart will suddenly revert to sinus rhythm on its own, it has done done this in the past. If not I'll see how I get on with the cardioversion. I've had some natural remedies recommended in answer to this post and I'm also keen to try those now.

    How are you keeping?

    Jean

  • So far, not too bad. I get daily funnies some AF some unclassified but nothing I can't cope with at the moment, pulse low, at bit too low sometimes, hovers from 50-60. Still a bit breathless on exertion but a bad back is stopping me run any marathons anyway, lol. 😂

  • Jean, so sorry to hear of your predicament.

    As you know I'm in a similar position to you except that my EP has not given up on me ...at least i dont think so!

    I'm going through the mill as I write...day 9 tachycardic 120/135 following 5 hour self terminating episode of fast AF. I had been AF free for nearly 9 months. Waiting to hear next course of action from EP. He has previously offered me a 4th study/ablation as it is unclear where rogue beats are coming from also.

    You will recall that I take Disopyramide. It really is the only drug that helps in any way but of course not perfectly. All anti arrhythmic drugs are potentially dangerous and some cardiologists do have a bee in their bonnet about Disopyramide.

    I would certainly get a 2nd opinion if I was you. I wouldn't worry about another DCCV.....you've still got to catch up with my 16 ( at the moment)

    Sandra x

  • Right behind you with the cardioversions Sandra! To be honest I can't see who would put me forward for one in the future as I had the feeling my EP was saying goodbye to me.

    Yes, a second opinion may be the answer. Oh to be normal!!

    Jean

  • Sorry to hear you are having problems Sandra, how is it making you feel?

  • Have to admit feeling a bit worse each day. Can't walk much more than 100 yards without becoming breathless and soo tired early evening. Should have been on a cruise this week but having odd days away instead. In Chichester at the moment. Will get back to GP if no better after weekend.

    Sandra

  • I know that awful feeling and not being able to walk far. I think an afternoon nap may help with the tiredness. AF is such a hateful condition!

    You're the third person that's mentioned Chichester to me today, now how odd is that!

    Jean

  • Yes Jean, it does help to have a very short nap...max 15 mins otherwise I wouldn't want to get up at all! We're staying at Crouchers hotel ..about 3 miles from city centre. ...would enjoy it more if I had some energy as lovely scenery and beaches.

  • From another Jean, I understand how disappointing and frustration it all is. I'm under the Brompton for permanent AF, severe AR (aortic regurgitation), and severely reduced lung function due to scoloisis. I have 3 consultants, and they do the best for me, but I think they are all stuck now. Not much they can do for the lung function, I use a machine at night, they cannot operate on the leaky valve (AR) because of my lungs, and the could try a TAVI where they replace the valve via an artery, but there isn't a suitable one as they are made for narrowing valves not leaky ones, although they live in hope. As for the AF, I've been in permanent AF for about 3 years now. I have had numerous CVs over the years and they used to work but now don't. EP is pleased with the way it is controlled, it is v irregular but rate is good. We have discussed ablation which he doesn't think will work, and ablation and pacemaker, but he is not keen to do that either as he isn't sure if it will make any difference, because of the other issues. I'm just 65 and worked for over 40 years, but now struggle to walk down the road. Just have to try and stay positive and do what I can. I'm having an MRI next mont, which I'm really not looking forward to, but it may show up something.

    Take it easy, and don't rush into any decisions too quickly.

    Best wishes

    Jean xx

  • Oh Jean, I really feel for you. Your condition is so much worse than mine that I feel guilty for mentioning my one thing - AF. I do hope you can find a solution to some of your health problems. Life can take lots of nasty twists can't it!There we are jogging along in life and out of the blue we are hit by something that makes us reassess our future. I'm 66 so know the frustration of having life as we knew it suddenly changed. I have had periods like you when it was impossible for me to walk far, but Flecainide and ablations have helped to lower my heart rate so that although it still goes high, it's nowhere near as disabling as it used to be.

    A person on this forum has given me some hope with a massage treatment that has kept her AF free for 8 months and I'm going to try it. She also gave me a few more tips on things she believes helped her.

    Today, I thought I'd gone back into sinus rhythm but it's been broken by a few bouts of AF and tachycardia. I knew I shouldn't have rejoiced and told everyone I was better so quickly!

    Please let me know how you get on with your MRI scan. I had one just before Christmas and there's nothing to worry about with the procedure itself. I'd heard awful stories about how it was like being in a coffin. All not true, the machine is open at both ends and is not long enough to cover someone completely. I was preparing to make a fuss, but there was nothing to make a fuss about.

    Hope things get a bit better for you.

    Jean x

  • Oh don't feel guilty, we are all struggling in different ways. I'll let you know about the MRI, have had them before and really don't like them. Have got a diazepam tablet to take before as now get so breathless especially when stressed, and I know my Dr is really keen for me to have it to see what if anything has changed.

    I went to see my GP yesterday to get the diazepam, but my breathing has been so bad this last week I got her to check me out. Lungs clear, heart rate OK, sats 92 which is not bad for me. She has given me a course of steroids as wondering if it's the pollen as eyes are a bit itchy. Hopefully they will kick in and do the job, they have done in the past.

    Take care, and don't for get to let us know how you are getting on

    Jean x

  • Getting a good gardener is a bit like getting a good builder - all the good ones are busy and there are a lot of cowboys about. You will need to research the locality and find out who has a good name and who doesn't. The local oap's are often a good source and age concern may be able to help with referrals. If you get a fortnightly visit you should be able to keep the garden under control, especially if you use wood chippings/bark as a mulch to keep the garden weeds down. My neighbour pays £25 every fortnight and gets a good deal for his money.

    Ian

  • You're so right Ian. At the moment I'm having a good spell heart wise which has lasted five weeks, so I have the garden more or less under control. It seems such a luxury to have a gardener. I did have one for a few days last year, but he was so slow cutting my hedges it really irritated me! He was doing it with loppers, I'd given him the electric hedge trimmer, but he carried on using the loppers. I wanted to scream!!

    Be well.

    Jean

  • Hi Jean

    You may have to grit your teeth and do it the hard way:

    1. Decide exactly what you want done and how often . Gardeners like to have regular work

    2. Get three quotes. If they don't turn up to give you a quote that's a good indication in itself.

    3. Check that they are insured. Ask who else they work for and check them out - references are invaluable.

    4. Have a look on 'trusted trades' or similar websites' for local people.

    5. Good gardeners are busy people - don't expect an immediate start.

    6. You will probably be expected to pay VAT so remember to check.

    7.Cowboys like to be paid in cash and will promise no vat.

    It all seems a bit of pain - but a good gardener is a great asset.

    Glad to hear your heart is going well.

    Ian

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