I’ve had no contact from the EP. I messaged his secretary to tell them I was back in AF and she called and then a cardiac nurse called me to see how I was. The cardiac nurse was great and said she would get the EP to call. She was concerned about my referral to Dr Hunter for a mini maze, and questioned why no one had talked to me to discuss what having coronary disease and AF together might mean if anything, or to see what would be next in the plan ie cardioversion with medication etc. Today I got my appointment letter for 26th April !
Is this normal ???
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Dadtoalad23
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No rhythm control medication. Just anticoagulant and beta blocker. In my mind I thought if it failed I’d get a quick call from the EP explaining what he would do next. Instead it looks like he’s got annoyed with my referral to Dr Hunter for mini maze and just cut me loose. I could see him next week if pay but I can’t really see the point. I’ve had no explanation of my enlarged left atrium and only a letter about my coronary disease.
This shouldn’t be the norm but post covid it appears to be. My EP did similar I was scheduled for an urgent ablation, when I emailed him to say thank you but no thank you, however I would very much like the opportunity to discuss the decision, he didn’t even reply. Do you know how long it will be till you get your mini maze and is Mr Hunter aware that the cardioversion has failed. The good news is that you did revert to nsr. Try to stay positive.
Thanks. Defo hard to stay positive when you’re left with no explanations. Dr Hunter said anywhere from 2-6 months. He said I wouldn’t need an ICU bed and most of the hold ups were because of that. I have told him my cardioversion failed, he said I’d likely be offered another one with rhythm control to see if that worked. Can’t help feeling the EP has seen that I’ve been referred and just stopped. I was expecting at least him to call and say we would offer ablation and explain reasoning. NHS currently seems to be a patch em up and let em go operation currently. Basically I’ll probably just pay £150 and see him in the next couple of weeks and see if I can get some relevant information to send to Sheffield.
Not long now for you ! Think you’re on the 8th which is my sons 11th bday. Will be wishing you the best of luck.
I wouldn't say your cardioversion failed if it lasted 3 days. I had one that didn't work at all, one that lasted 2 days. The latter was enough to evidence my heart can do nsr and was enough for EP to agree to ablation. And that one was on hefty doses of rhythm control. You did 3 days without that.
I think you are fortunate that your EP is still dealing with your case as you have pre-emptied any treatment he would have suggested by going straight to Dr Hunter. What would be the point of him offering a conventional ablation if you are set on a convergent maze operation? Has Dr Hunter said that you are definitely a suitable candidate? Maybe you should tread carefully round your EP in case you have to use his services after all ❤️🩹
I agree. Although I also feel as a patient having to tread carefully around consultants so we don’t upset them isn’t how it should be. I know the nhs isn’t perfect and under strain but as my atrium has enlarged if I hadn’t of preempted approaching Dr Hunter I’d of been waiting three months just to have a conversation about my treatment. I like my EP he has done very good for me and I was maybe naive about time lines. I stupidly thought I’d have the cardioversion and then a few weeks later have a conversation with the EP about what’s going on. This is the first time I’ve had to rely on the nhs truly and will be in this relationship now for the foreseeable future.
It’s hard to wait when you are (understandably) anxious but I am sure your EP would act quicker if he considered there was great urgency. It is common for people who have had uncontrolled AF for some time to have an enlarged atrium and it is also common for the atrium to shrink when the AF is properly treated. As the nurse said you need more explanation of your situation which only a cardiologist/EP is qualified to give. Best wishes ❤️🩹
sorry I missed this post, sadly it’s all too common a reaction from EPs when you pursue a mini maze option. Mine told me not to do it. Now he has a very different view (not just because of me but because there has been some recent training for EPs on hybrids).
We are all so different. When it comes to a fib, I do not think there is anything normal about it. My first cardioversion was like a dream everything went well and I felt so good when I woke up. Unfortunately, it only lasted 3 1/half weeks, and then tachycardia back with a vengeance, a few weeks later, they did another cardioversion and the plan was to keep me in and place me on Tikosyn. It was not even in my brain that this could fail, but when I woke up, my doctor spoke to me gently to tell me it was a total failure, and they had tried shocking me three times. Because they could not get me into NSR the testing with the medication was off. Originally I was to be in the ICU for a total of five doses. My doctor does not believe in doing everything over and over again. I am at the point where in less than a year, I could be in heart failure he does not want that happening. He said I have had enough as has my heart. I have had three ablations. One was VOM and hybrid. I actually came out worse from that and since the end of April have been totally miserable except for that 3 1/2 week reprieve. My doctor put me on digoxin and metropolol S. Like everything else when it comes to meds it only kept my heart rate down below 150 for two weeks. He doubled it same thing two weeks later I went right back up. My body is resistant to everything they are trying they don’t know why. Wednesday I see him, and we are discussing a special pacemaker with leads to both ventricles as well as an ablation of the AV node.
We know a fib cannot be cured at this time. My doctor said it’s time to stop trying to fix the afib. He wants me to have quality of life. He said it’s obvious your body has had enough as has your heart. Evidently the pacemaker he will use for me is relatively new. The atria is not involved at all only the two ventricles to beat together. He believes I will have quality of life relatively fast before this pacemaker he said the other one would not have helped and I would’ve gone into heart failure. He is the first doctor that really mentioned quality of life. Heart Institute of East Texas is progressive from what I’m seeing. I believe I am in very good hands. Not one person has had anything but uplifting stories of my doctor even the way he and his family are at church. I recently found a video on YouTube of a doctor in the UK he could have been my doctor not Justin looks, but in everything he was saying about pace and ablate. I know people who have had more than a dozen cardioversions, and from what sounds like all the medication’s made for a fib. I have been on the major ones. The thought of maybe actually doing well on a pacemaker is beginning to make me feel excited instead of worried. I am surprised that the nurse spoke up against the maze I would think you want long term results. I was willing to try the med if they got my heart back into rhythm because I was dead set against a pacemaker. Once my doctor without my even asking, FYI told me all about the newer pacemaker that’s special for my case I was appreciative. I am not getting any younger right now except for the last procedure, I have healed well and quick time to go for the big one. I know an enlarged heart from pumping so hard is one of the reasons for heart failure. It has not been mentioned yet however since April having a heart rate in the 150s it has given my heart a beating not the type it needs . Best of luck if you can get the mini maze I don’t know why you would not. I considered because of mummy luv on here. I just don’t know physically if I can handle it now hopefully by Wednesday my pace and ablate will be scheduled and for very soon. My doctor does not waste any time so far and it has only been a matter of days to help me. He wanted to give the digoxin a chance it’s less than a month into failures with it. I will discuss the mini maze with him Wednesday, if it’s not right for me, he will be straightforward I know. I think he failed charm school. Lol but he gets a plus for honesty and knowledge. Best of luck I know treatment is much different there as far as waiting times my doctor is trying to keep me from going into heart failure. I think he believes I should not be just trying things out at this point, but actually finding a fix. If I were younger, I would definitely want the maze or something similar. That is why the VOM was done on me. Unfortunately it didn’t work for me. If you have some thing that can keep you stable until you can have the maze done, and there are no other circumstances, I would say go for it. Meds are only going to work until they don’t.
I think you and I are in a very similar situation. I’m 66 and live in France. I’ve had AF for around 25 years. I’ve had 4 ablations and 2 cardioversions. I always thought I had Paroxysmal AF because between, pretty extreme, bouts I would be in NSR. But since September, my EP says I’m now in permanent AF (because I would revert if amiodarone stopped). The September bout was really nasty. Again I was rushed to hospital because the AF of 160 suddenly dropped to 40. I collapsed and we all thought I was dying. That was the first time my AF had led to a temporary bradycardia. During 3 days in hospital I was in AF which only finally calmed with amiodarone. Normally I wouldn’t be offered that drug as it had an adverse effect on my thyroid 10 years or so ago. But I can’t take Flecanide and Digoxin no longer works-amiodarone was the last resort.
I’d become really enthused about the possibility of a mini maze procedure but a couple of weeks ago I was told that would not be possible/effective. I have so much scar tissue in my heart. In 2020 the last ablation resulted in a tamponnade and an urgent thoracotomy to repair my pericardium. On top of all of that my EP has told me he suspects I have heart failure with preserved ejection fraction (I had no idea what that was!). I’m now taking a diuretic as well as Apixaban, bisoprolol and amiodarone and am in NSR and seeing a pneumologist next week. But I can’t keep taking amiodarone. The next step will be pace and ablate. Like you, I really hadn’t wanted that but also, like you, I can’t continue like this. QoL is key and my EP really understands that. It’s all pretty scary but has got to be better than this knife edge feeling all the time.
Please let us all know what the conclusions are from your next EP appointment. We’re very lucky really that there’s something to help us aren’t we?
0h my goodness we are very similar. My body has resisted. Everything tried. The longest lasting which I took for granted at the time was my RF ablation. That was a year and a half. My very aggressive procedures in April have kept me from bouncing back at all. I did not think I could feel worse but I did
Unfortunately, you may have just giving me the answer about the mini maze. The reason my doctor does not want to even bother with another ablation is because of all the scar tissue. On top of that I am close to heart failure if not actually in it and he’s not telling me yet. My appointment is Wednesday. He wants to get me quality of life ASAP. He said I have been through enough as has my heart. He said we cannot fix a fib which most of us on here know it cannot be cured. Dr Saine has the attitude that the other things have been tried and failed after brief periods of time. I have come to agree with him. It’s not worth doing the same things over and over again. I know there are people who have had dozens of cardioversions and many many ablations and medication’s. I think sometimes it’s sheer luck that they ablate the right spot. Each ablation I had did hold but another spot start it. I compare it to my garden hose that my cats got hold of. They put so many tiny holes in the fabric that you never know which one will leak next and that is how I picture my heart. Another thing that no one else had mentioned. FYI I had doctors in Florida and in Houston and now have the ones that are taking care of me closer to home. Evidently it’s my two ventricles not beating together where the issue is he told me a few years ago the CRT pacemaker was not available and I would be in heart failure. now there’s a chance as you say. Yes, I decided to go for it. In fact, I had a second opinion scheduled and I just canceled it. I do not want to start all over again with another doctor and I know that is what would happen. Sitting down with my EP last month after the failed cardioversion, I realized he had made me feel calm, and that he had my best interest in mind. I had planned on asking questions but before I could, he actually answered them if he tells me on Wednesday, come back Thursday and get the implant I would be there. Just like everyone on here I want to feel well again. I have so much I want to do but physically right now I can barely walk to the kitchen.
I think the reality that right now I am probably in the best of health other than the afib it is a reason to get things done. Knock on wood. I’ve been fairly healthy throughout life and even have almost all of my parts, including my tonsils. To try other things puts me closer to heart failure, and even older than I am. Except for the thing last April, I have recovered amazingly from everything else done. The cardioversion that worked, I went in and a wheelchair, and I walked out and felt like a new person. I was like that with my ablations as well. I think the hardest thing with the pacemaker will be restraining myself from doing things I take for granted even now like picking up my cat weighs around 16 pounds. Lol I am Italian I talk with my hands so keeping my arms still will definitely be a problem. Friends say I would be silent if my hands are tied behind my back lol.
I can’t wait to get to my appointment. It’s like waiting for the next chapter of a book to be written. I guess it is for all of us. PS I meant to say amiodarone was the first thing they put me on it was horrendous. I had had a cryo-ablation and they did not want to take me off amiodarone because of the chance of failing they wanted me on it at least six months. I should’ve been off at the first day, because when I left the hospital, I was covered with a rash that remained I was so ill that I was usually in a fetal position. I tend not to push the issue with the doctor and didn’t really give him a picture of how I was feeling I guess. At four months, he let me stop the amiodarone and put me on some thing else. Yes immediately I went back into full a fib again, this is why this doctor doesn’t want to play with meds or anything else anymore pretty much he will ignore that I even have a fib and the brain of it will be dead with the pacemaker taking over. This is what we want at the end of things right? I don’t care how we get to that point I just want to be there NOW I will tell you there are times I don’t even know why I am still breathing because it’s not even worth going on if this is my life now. To anyone feeling frustrated you have to push in for me that meant finding another doctor. I don’t have a crystal ball but I have a gut feeling that this guy is good.
As I write this I’m laying on my bed when I really want to do some housecleaning believe it or not the problem is I cannot because I cannot stay on my feet. I have such pains in my legs and I get nauseous breathing I keep remembering that sunny day when I walked out from my cardioversion that succeeded that is my goal to feel like that again soon.
You have been though a lot Dawn ! Hell of a lot to deal with for sure. My Af also came back worse after the cardioversion and it must be heart breaking(excuse the pun) when it comes back worse after ablations. Mines settled down a bit again thankfully still persistent but back into the 60-80s mainly. Just need to keep my stress down. Good luck to you Dawn appreciate the response as always. 🙏🏽
My first cardioversion failed. My second did not even take place as far as being successful. The doctor said they did three shocks, which is the max, and I didn’t even begin to take affect not even for a minute. I cried when he told me. I am not a person who cries easily, but I had not even considered getting no benefit out of the cardioversion. One thing I like about my new doctor is that he is wasting no time to give me quality of life and to prevent me from going into heart failure. I think I am much closer to it than he has told me yet. I see him Wednesday I have a list of questions. I’m so glad that you are doing well now.
After the cardioversion failed, my doctor canceled the Tikosyn hospitalization. He put me on digoxin which immediately brought me down from the 150s to 80 and then down as low as 60. It then went back up to the 80s. I told my cousin some thing didn’t feel a bit right one night and sure enough I was back in the 120s. My doctor doubled the dose of digoxin and metropolol XL. Two weeks later and here I am way up in the 120s again. Yesterday I had the strangest thing, heart rate suddenly dropped to 69 then about two hours later back into the 120s. That happened twice last night. If I were not seeing him Wednesday, I would’ve called the doctor by now just to make sure there was nothing going on. Today I feel very clearheaded. I need to take my numbers soon. I have a feeling my numbers might be down again. I feel like the patient who has a toothache until they arrive at the dentist. Forgive me if I already said this to you maybe I’m not so clearheaded after all lol.
Of course everyone is different but I gave up on cardioversions as had 5 and longest time in NSR was 3 days. Since had 2 ablatons and Sporadic AF breakthroughs well controlled.
had one conversion that lasted a year. Here in Bristol they don’t care about ongoing care. They never see unless I put in a complaint (two so far)I should have seen a consultant last JUNE after carrying a monitor for a week, still waiting !!!!!!I just plod on taking the meds
it’s ridiculous really isn’t it. We need a huge shake up of the NHS and start getting people better and supporting them properly. I applied for nhs cbt counselling and once they’d established I wasn’t going to harm myself or others they told me I’d go in the waiting list for 6 months. If I’d waited from being diagnosed with AF in October for my local cardiologist I’d still be waiting ! Instead because I paid for my EP and echocardiogram then had CT angiogram In the time I’d of still be waiting I’ve been diagnosed with moderate disease in my LAD and have been able to start treatment. There must be hundreds if not thousand like me who are untreated on a waiting list hoping for the best when they’ve actually got varying degrees of heart disease ticking away untreated.
My usual consultations were with RUH Bath. When it came to appointments with an EP I was referred to Bristol. When I had my ablation in late 2018 I had great care and support. So, I can only give feedback on the process and procedure of ablation which was first class. Maybe the aftermath of Covid and the general state of the NHS is the problem.
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