Just been told I will not be getting another cardioversion or an ablation as gone back into AF as heart too large- though how it has got too large after being back in AF since May I don’t know? Anyway that us what current Cardio and EP have decided in their telephone discussion. They want to put me back on rate medication which never agreed with me. The only medication that seemed to not make me feel like a zombie was 62.5 digoxin. I was only on that for 4 weeks before first successful CV and as initially hit worse on these medications after about 3 or 4 weeks wonder if it’s worth it? I also wonder how people deal with being in persistent af. I have been told I can no longer go into the mountains over 2,500ft and as I live skiing will be hard and can’t visit places like Johannesburg at over 5000 feet. Ah well life is going to be a drag.
Persistent AF: Just been told I will... - Atrial Fibrillati...
Persistent AF
Life is a gift, in all its appearances! Never be sorry about what you can not, but be happy about what you still can, and do it! I always remember a sentence I heard once: "I cried because I have no shoes, until I met a man who had no legs..." I am almost 70 and so happy to be getting old - so many my acquaintances and friends have gone in their 40-ties (glass half full , lol). Wishing you all the best! Peter
Yes true. I am 77 so was just hoping to have a few better years left especially after the wasted 18 months we’ve just had with Covid. I was just looking forward to feeling so much better as my last CV lasted 15 months so couldn’t see why an ablation would not work and was so looking forward to being as good as I was with my cardioversions.
So true!
I like that. 👍👍👍
Oh anyone want to buy a 3 month old six lead Kardia machine - hardly used? Seems silly to have it now and a bit of a waste of money for me too
Worth getting a second opinion Dezi as your last CV seemed to work for a long time. Atrium enlarges because in af abd shrinks back if in nsr fir a while
Yes I am thinking of that now. Thanks Rosy. To be honest neither the telephone consultation with the EP or cardiologist were good and I felt that they were against it for other reasons even before the ECG had been done. Now, they are suggesting rate medication when we spent about a year trying rate medication that made me worse rather than better so feel a second opinion would be worth it.
Have you tried Tykosin? Sotolol made me zombir like and metoprolol didn’t work-Eloquis and Tykosin have been much better.
No, not available in Europe. Apparently organization that regulates meds in Europe found it not convincingly effective. I have been taking Tikosyn for 3 yrs and have had no episodes of afib or noticable side effects. I was in afib and CHF prior.
hi dezi can you not have a pacemaker!
I feel for you. Can you get a second opinion just to make double sure there is no other option xx
I’ve been in permanent AF since last Oct (1920) and struggling with the idea of not being able to walk the dogs , get up hills or have a day out in London . My heart is also too large ( but half hearted and faint hearted describe how I feel) however after one cardio version ,which lasted 72 hours, and chasing various medications, I’m now getting used to it . I am on Bi soprolol 1.25mg x2 and Apixaban and coping, so yes….. better the glass half full and shorter walks that worrying too much about trying to get back to what was yesterdays life. I’m 75 now and less stressed that last year……you do get used to it and find other ‘diversions’. Good luck.
Sorry replying under my PC name as used iphone app to post original as had not been able to post answers to posts on PC so Dezi and Desanthony are one and the same person. I can't take Bisoprolol or verapamil and such like as they make me worse. Just before my first CV was on low dose digoxin for about 3 weeks and I was OK with that but to be honest don't think it actually did anything and since then even going back into AF was not prescribed any rate control medication. My BP and heart rate doesn't seem to go up when in AF and is quite normal. My wife's BP is higher than mine and my pulse and BP went down alarmingly when on Bisoprolol.
It’s such an individual thing , you have to try different drugs and combinations to know whether they help and sometimes it takes a few weeks to be able to assess whether they are of any benefit at all. I thought I was okay on calcium channel blockers ( Adizem) before an unsuccessful CV, but I was away with fairies (but without the fun ) afterwards. It does sound as though you are pretty stable viz HR and BP which is reassuring. I only take 1.25 Bisoprolol most days but always take Apixaban am and pm. The next step for me is a ‘ Holter’ monitor next week to see what’s happening 24/7. Exercise and weight seem to be pretty important but it’s interesting to note that athletes and sportspeople seem to be the most prone to AF ( and of course Sherpa). Good luck ,hope you can get back to near normal. At least permanent AF is not so chaotic and dramatic. AD
I have tried 5 different rate control drugs bisoprolol at different doses, twice, verapamil, two other calcium channel blockers and then 125m digoxin. All made me worse than I was without them. In the end they put me back on low dose bisoprolol and after about 6 weeks I couldn’t even walk downstairs one Saturday morning I was so bad - dizzy, nauseous and breathless I took about 4 steps down and had to stop. My wife rang the cardiologist and he just told me to come straight off. After that they tried 125 digoxin and same thing happened and then 62.5. but was only on them for around 4 weeks before my first successful CV which lasted just short of a year and even though went back into AF was never put back on the digoxin. As I said the reason the cardiac nurse put me forward for ablation was because the rate control medication made me worse. I have only been in AF for less than 2 months abs all of a sudden another cv or the long awaited ablation cancelled twice because of Covid cannot be done - seems odd to me?
The sooner they can do a CV the more likely it is to be successful from what I understand, ……ablations one has to wait around for it seems.I should have pushed for a cardio version immediately I knew I was in persistent AF , I waited for six months. Covid didn’t help. Still it is what it is Supplements are suggested particularly Magnesium and Q10 certainly they seem to keep my heart rate down. All the best with your plans and I hope there’s a positive outcome.
I waited 9 months for my first CV. As no cardiologist at the hospital and then after I finally had an appointment was to go back in a month to arrange cardio version but hospital had an outbreak of norovirus so was closed to outpatients for 3 months !So glad when I got one it worked for nearly a year.
I'm in my 6th year of permanent AF Up to a year ago I could do anything I wanted to, a year ago I fell downstairs on my bottom with my right leg bent backwards. Results: fracture of my right fibula, easily fixed as it's not a weight bearing bone, and damage to my Peroneal nerve. That has had a much greater effect on my life than AF, or asthma, and the other ailments have. No longer can I drive. I wear a leg ,/ foot splint. Outside I need a stick for walking. The local shops are a quartet of a mile away but I feel I'm doing a marathon getting to them. I can only carry one bag of shopping at a time.
My plan is to do online shopping, plus trying to walk more outside for exercise.
For 50 of the last 52 weeks I've been staying with my sister, prevented from doing anything other than washing, eating, resting, sleeping, and taking the occasional walk.
Life is good however and hopefully will improve for is all, in the next year or so.
So sorry to hear that. Please get a second opinion and perhaps try some supplements and acupuncture in the meantime?
I’ve been in Persistent AF for about 2 years after 2 ablations. I tried very hard to get another but no success.I am now symptom free and I only know I am in AF because my BP monitor says so. It seems that my system has adapted and life seems back to normal.
I am 72, on Bisoporal,Apixaban and 0.5 digoxin. I eat whatever I like, do whatever I like, am overweight and don’t care. I love life and enjoy every minute. Worry and anxiety are the greatest killers and serenity and happiness the best medicines!
Ha ha Kate ! You made me chuckle with your last comments …and you are right , enjoy what you can while you can .there is plenty to miserable about in this world ,so we need to focus more on the fun things x thanks for the laugh ☺️☺️☺️
Again replying as Desanthony but Dezi and Desanthony are one and the same as had to re join on iphone app as for a few days have not been able to post under original name on my PC on the forum. I cannot take bisoprolol or anything like that as it makes me feel worse. No side effects for about 3/4 weeks and then am awful. For about 3 weeks before my first successful cardioversion I took 62.5 digoxin as the 125 was as bad as bisoprolol and verapamil and the other two rate control medications they put me on. Whether the 62.5 digoxin will be any good for a longer period remains to be seen as I was never put back on it in between my 3 successful cardioversions. The thing is when I asked to be referred for ablation it was because none of these drugs worked for me.
I've been in persistent AF for nearly 2 years now. I've had 2 cardioversions, one lasting 5 days and the second 45mins. I've been waiting for several weeks now for a cardiologist consultation, and I suspect I've been tossed into the long grass!It has had a huge effect on me physically and mentally. I used to be very active indeed. At 60 I would think little of cycling 12 miles to work and then running 10 miles back home. Now (at 70) I cannot run or cycle at all, and an hour walking knackers me. I need a nap (or a longer sleep) after both breakfast and lunch, and have to pay for people to do a lot of the jobs I would formerly find a breeze. So, I've been very down indeed at times, and struggled to adjust.
All I can say is that I am gradually coming to accept my new physical condition. As others have said, I've tried to concentrate on the fact that I'm still alive, and still (relatively) functional. Quite a few friends and neighbours of similar age are either dead or physically worse than I am. It has taken time (and I still hope there may be a way out) but I'm adjusting, and learning to make the best of things. Not easy, but I think it is so important to try to focus on maximising what time I have left, rather than obsessing with what I have lost. It has taken time, and will continue to do so, but my mental state is definitely improving (with better and worse days of course).
The only meds I'm on are Apixaban and digoxin. Bisoprolol was terrible for me, and Flecainide unpleasant, so I stopped them. No point in the cure being worse than the disease!
Try to find other interests and hobbies that are less physical. I'm growing a lot of potted veg and houseplants, getting back into photography (a whole new experience with digital cameras!), and I intend to go back to watercolour painting, which I dabbled in a few years ago. OK, it's not the same as Snowdon via Crib Goch or up Striding Edge to Helvellyn. But, as I got older, these would have become out of the question anyway - it's just happened a lot sooner than I had expected.
I always suspect that the art of being happy is less about doing things, and more about having things you're looking forward to do. So I'm trying to cheerfully ignore the fact that much of what I've been wanting to do might take a long time to achieve, or even never happen at all. Keep in there - if you're like me then you'll slowly develop acceptance and adapt to your new circumstances: it is not easy, but its worth trying to stay as positive as possible
Good luck
In a similar situation, but not exactly - I'm also back in constant afib since the flecainide simply stopped working, and was preparing to have another ablation. I made the mistake (or no mistake) of asking the cardiologist and EP to test me for anything else that may be wrong before doing the ablation, and am now facing an angiogram and possible stint in the next 2 weeks, if its simple, and if not open heart surgery. The covid year and a half break to all fun and games did its damage to all of us on both sides of the pond, but maybe you too can see if they can find something else that is interfering with your blood flow in the heart, prior to just giving up on anything to improve you? Maybe you are a candidate for a mini maze ? Good luck regardless!
You do not state how many ablations you have had. My opinion is that you are not being offered another ablation due to the cost, and you have probably have had two ablations. If you had the funds to go private, you would be able to have another ablation. The sad part is that if you were in persistent too long before your first ablation, the AF comes back and comes back.
So I was persistent for three months before my first ablation when the damage was done. I have had three ablations, and now I am persistent again. I paid for the three ablations myself, and now I am going to have a fourth, paying for it myself. Money makes the world go round.
Hi, Sorry answering as Desanthony as when I posted original using my other account as Dezi I was unable to post using my original account on HU so Dezi and Desanthony are one and the same. I have not had any ablations. I have had 3 successful cardioversions the last of which lasted for 15 months going back into Afib in May this year.
I agree with the other on this thread to get a second opinion especially since you have not had an ablation. Have you had an echocardiogram to determine the size of your heart. Other than our cardiologist and EP pontificating, how have they shown you that you have such an enlarged heart that you cannot have an ablation. I would be very suspicious.
Sorry just realized I am going to be confusing people here because used the app to post original as was unable to post and answer questions on HU using my original account on my PC - though this morning I am able to! Dezi and Desanthony are one and the same person. Hoping this won't happen again as it confuses me too as just started answering this morning and then realized.
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