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AF Association
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Abandoned!

Well, finally had my 13/2 appointment with EP yesterday and as I don’t want an ablation I have been virtually abandoned.

Was told I had tried all the tablets! Can’t take Flecainide it makes symptoms worse and been changed from Bisoprolol to Felodipine and now on Nebivolol.

Keep taking the Nebivolol and wait to go into permanent AF! Next please!

Di😟

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Oh dear, that’s not good Di. I can understand your disappointment but I can also see that the treatment options for AF are very limited - lifestyle changes, drugs, ablation, Pace and Ablate - and that is it. Abandonment is an emotional response but doesn’t mean they don’t care, just they have run out of suggestions to offer.

As a matter of interest - why did you reject ablation? Xx

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The feeling of abandonment by your EP is an awful feeling. It's leaves us between the devil and the deep blue sea not knowing which way to turn.

Have you ever had a second opinion from elsewhere sometimes a new pair of eyes can bring a different perspective or suggestions. I know treatment is limited but you may not have exhausted all options but just the options your particular EP feels he or she has. It's worth thinking about.

Try to keep your spirits up even though you feel left to it. Take time to think about it all. Best wishes. X

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Thank you both for your replies. At 75 I really don’t want to go down the ablation route whilst the AF episodes are still not too debilitating. It’s the continuous breathlessness which he had no answer too and when I said I fill up with fluid even though on two diuretics and that the fluid starts the AF off he just said oh yes you mentioned that before!!🥺

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That sounds like a very tired response from your EP, Di. Perhaps CD’s suggestion of a second opinion is the way forward. Nebivolol should be better than Bisoprolol as it doesn’t act on lung tissue but that doesn’t help with the fluid build up you experience.

I understand your feelings about ablation - I’m the same age as you and feel the same way but your current situation needs some direction. Have you been told why you have fluid build up in your lungs?

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It sounds like time to 'move on' and to try and find someone with more knowledge and a lot more 'sympathy'.I had an experience like this with a thyroid condition at our local hospital and decided to go private .One consultation from a decent and experienced doctor started the ball rolling in the right direction.

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Which diuretics are you on and could your physician have you up the dose. My AF is controlled by an lcd pacemaker, but I am still on 40mgs Furosemide pd and that keeps water retention at bay. Its the water retention rather than the AF which caused my heart failure. For me AF was hardly noticeable - the bubbling chest and weary mood, were more worrying - the medics were the ones worried about the AF. Nor fortunately, a year and a half on a proper balance has been restored.

The ablation I had didn't work, hence the pacemaker. But ablations do work for most people and it wasn't that invasive a procedure. Certainly a pinprick compared with the 2 open heart surgeries I've had.

My recommendations are firstly that you check if you can increase your diuretic and then seriously consider the ablation procedure.

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Am on 50mg of Spiranalactone and 1mg of Bumetanide at the morning. Nobody has mentioned heart failure yet, but will try and see the Cardiologist who sent me to him in the first place. She is very good.

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I think it is the AF which causes the water retention?

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I’m sorry, but I fail to understand how the AF episodes are NOT too debilitating. After you explain the massive fluid retention. Did the EP tell you that an ablation would rid you of fluid? I have had AF for more than 15 years and when sometime last year saw that my ankles were swollen, I realized my heart is not pumping as well. EP told me my ejection fraction was low. It was time for an ablation. Didn’t want those drugs, the ones that are certainly debilitating that everyone talks about here. Ablations are much better than they were three years ago. I am pro-ablation. After having 3, I have been in NSR for two months. If I need another, sign me up. You should really consider an ablation. Your condition warrants it.

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Have no idea what my ejection fraction is and as my hr rarely goes very high during an AF episode I’m happy to wait and see. Hopefully the closer I get to permanent AF the less stressful the episodes will become.

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I have had persistent Afib since 2007 and have never experienced on episode where my HR jumped up. Yet I had all these symptoms. From what I have learned, it's the irregularity of the heartbeat that causes the heart to not perform properly, which over time can be detrimental. Having a successful ablation, changes that paradigm in an incredibly beneficial way.

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No, it’s around my stomach. I look 9 months pregnant some days and fluid presses on my heart and off I go. Had scan which came back normal so everyone ignored it.

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I know the feeling of being abandoned by your EP and it's not nice! Some members on this forum are kept under the care of an EP no matter what. Mine is really only interested in performing ablations. I've been told that after having three I can have no more, as some people just aren't helped by them and then of course the words that I was being discharged into the care of my GP. I thought it was the end of the world, but you know it wasn't and with all the changes I've made to my lifestyle with diet etc I'm better than I've ever been.

Don't give up hope of having a normal heart, accept where you are for now and see how you get on. If things get worse you can always be referred back to your EP.

Best wishes.

Jean

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Thank you so much for your kind words.

Di x

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Hey Jean, not to rain on your parade, but Hylda's EP did not abandon her. EP's are specialists in a very narrow field. Her EP believed he could help her and she chose not to go ahead with the ablation, which his speciality. What can he do for her now? I have no idea except to return her to her cardiologist that will continue her on the same meds. Ugh!

This is her doing - not the EP. What is interesting, of course, is that we get the whole picture of her condition once she starts replying to everyone. She needs to have that ablation. Here in the States, there is an ablation motto: A failed ablation is better than no ablation.

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Right

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I think we can all only speak as we find, I was diagnosed with AF 14 years ago. After my first two ablations I felt worse and had more attacks of AF, then my third ablation helped but left me with lots of bouts of constant AF lasting for around 5 months at a time - the beat wasn't so fast though. However, I still believe the main reason I'm so much better now is because I changed my diet and lifestyle.

If Hylda tells me she was abandoned by her EP, I believe her. I felt mine abandoned me too. I know of people on this forum who have never had an ablation, but are still looked after years later by their EP. I just wish that mine still kept an eye on my heart, but no I was discharged still feeling poorly with AF.

We all have different levels of severity with AF and at one point after my two ablations mine was extremely debilitating and I could hardly walk from one room to another. I wondered if that was how it was going to be for the rest of my life. Fortunately I now have my life back and have just walked home from shopping up a really steep hill.

I disagree with the ablation motto you state. I feel it's far better to have had no ablations and still have a heart free of scarring. Once while in hospital with AF I was told my heart had probably become stiff because of them.

Just my opinion and I respect yours.

Jean

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Just a couple of points because of geography. In the US, patients are typically seen by a cardiologist who recommends an EP. So, when the EP has done the work, the cardiologist continues to see that patient. What you are telling me is that there is no cardiologist, just an EP. If that is the case, then I am sorry for jumping to conclusions, and understand how Hylda would feel abandoned. May I ask what years you had your three ablations? It's the scarring that prevents Afib, so it's bit of a Catch 22.

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The cardiologist referred me to the EP, but now I have just my GP’s surgery to rely on and there is no continuity of care there.

Di

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Why can't you just make a follow-up appointment with the cardiologist?

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Because unless I pay to go privately, I have to have a referral from my go and that could take anything up to six months

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Sorry should read GP.

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Seems to be a bit ridiculous. The cardiologist that you went to before, you can't return to... Or if you do, you're penalized with a higher rate?

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Yep. Not just automatically referred back.

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It depends how poorly you are. You are suffering with very bad water retention, probably caused by AF, and that should be something for a cardiologist to take care of it you have refused/been unable to tolerate the treatment suggested by your EP.

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My ablation dates:

8th June 2011 - Took 3 hours

26 June 2013 - Took 6hrs and the person having an ablation after me was cancelled

3rd July 2016 - Took 5hrs

At one point I was under the care of a cardiologist and eventually referred to an EP by him, then the cardiologist said there was no point going to him while under the EP's care. So yes, when I was discharged it was purely to be under the care of my GP and Hylda may well be the same. I have AF nurses at my local hospital and can call them at any time for advice, or if I feel I need a cardioversion.

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Did they ever tell you why you can't have another ablation? Not saying you should, just curious...

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I was told that I was one of the people that ablations didn't work for. Every area they ablated it managed to break through and come out somewhere else. I was told my AF had started coming from an unusual source. I was too stunned at being dropped to ask many questions. I spoke to Dr Gupta in York, UK about it once and he suggested seeing a different EP. At the moment with my change of diet and wearing looser fitting clothes, I've been Af free for three and a half months and only take an anticoagulant.

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That's amazing in of itself. Change of diet never helped me, although I'm allergic to a ton of foods and medicines. Whatever you're doing, keep it up.

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Now you’ve done it! Been and bought size 16 jeans. Always vowed I would never go over a 14 even if I had more rolls of flesh than a Michelin man and my eyes popped! Let’s hope looser works for me too.

Di

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Being comfortable is the most important thing. I bought a pair of denim dungarees from Sainsburys, just to wear when gardening and indoors. Oh the comfort of my waist being free from constricting waistbands! Am tempted to buy another pair.

Jean

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Sounds tempting

Di

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When I saw the EP I got that vibe that he was only interested in doing the ablation for my Svt, I wanted to think about it because I hadn,t had many attacks. I do feel abandoned because the doctor wanted to put me back on bisoprolol which made me feel like a zombie, I have bad days with the ectopics and pressure in the chest and it does make me feel down.

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I've stopped taking my Flecainide and Metoprolol, felt they were doing more harm than good. I think we understand our bodies and their reactions to drugs more than some of the experts.

It's horrible to experience heart problems and we can't help but worry. I'm keeping my fingers crossed that my diet and wearing looser fitting clothing will keep me AF free, some hope I know, but we need hope of a cure.

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Hi Hylda - I think the fluid retention is causing a lot of your problems. When I was first diagnosed in 2014 I had fluid retention (I put on over 2 stone of fluid in two weeks) severe breathlessness, could not sleep because I could not lie down and high HR. Was admitted to hospital and told I had heart failure and AF, spent 12 days there. As soon as I got rid of the fluid my breathing was back to normal. I was sent home with Bisoprolol, Digoxin, Ramipril and Fluroseimide. I was told the Ramipril was for the HF as it would help my heart pump more efficiently. Are you on any medication for HF. I too am on Nebivolol now because of Biso causing breathing problems.

I have been lucky that after 6 months I was able to stop the Fluroseimide as my fluid retention was stable. I still have it as a stand by if I start to retain a bit of fluid I then take it for a few days. I really think your medics should be looking into your fluid retention, especially as you are on two lots of diuretics and they are not working. I agree that it would be a good idea to get a second opinion. Hope you can get it sorted.

Cassie

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Thinking about you Di 💞

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Many thanks.

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Hi Hylda :-) we should start a club for the 'Ablation refuseniks' who have been abandoned.

I have attended an Arrhythmia clinic for the last 2 years since being diagnosed with P-AF almost 3 years ago. I was offered an ablation last year and when I said no thanks I was attempting to control the progess of my condition with lifestyle changes and medication no one was interested in discussing it and I was told I would not receive any more appointments at the clinic :-( .

My GP does check my bloods twice yearly to make sure the Apixaban is not having an adverse effect apary from that I am on my own. Even more reason to show what I can do by my own efforts.

So take heart :-) you are not alone.

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It was the EP who suggested I go into permanent AF last time I saw him but he has been off sick for nearly three months and now he seems to have just given up! Certainly with me.

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Hylda :-) I have never seen an Cardiologist let alone an EP, we don't get such luxuries around here . I do have one in name though in case I decide I want an ablation.

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I was diagnosed 6 years ago and left very much to my own devices even after a quick trip to Resus. It was only when talking to a locum at our surgery that I got a referral

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My cardiologist has abandoned me because I didn't want to take Bisoprolol and he doesn't think I need another ablation of a pacemaker so nothing more to say I guess 🤔

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Just had yearly blood test today

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Just noticed a 54 slide presentation by him on the web, on who can we cure from AF!

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Who is he?

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Dr Kirubakhran at QA Portsmouth

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Hi Hylda, to you have the web address by any chance? Thanks

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Rcplondon.ac.uk but I just put his name in on the web and it was about the the third down. Dr Senthil Kirubakhran

Di

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Thankyou.

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Realise how you must have felt Di. We rely on the experts to keep us on the right road,can urologist not help with your fluid retention? Trust you have a good GP , thinking off you Cxx

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Many thanks, urologist week after next. Fingers crossed.

Di x

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