1 year anniversary of Hybrid Mini maze

[4chickens]

My 1 year anniversary is actually Saturday but I’m sitting in a church hall acting as a polling Clark for the police and crime commissioners election, I’ve been here since 6:15 am and will finish about 10:15 pm, that alone would of been impossible 12months ago.

There’s been highs and lows over the 12months. Getting over the initial surgery was easier than I expected. Everything was brilliant until Dec 2023 then wham AF hit, this was felt to be caused by pneumonia plus steroids and antibiotics. 2days in hospital followed , with them restarting apixaban and heart medication in preparation for a cardio version. After 4 days I reverted to nsr following a glass of wine. (I’ve never self converted in the past) 2 more bouts followed 1 in January lasting 7hr and 1 in March lasting 2 hrs both again on the back of chest infections.

Since March I’d stopped all heart meds and been great until about 2 weeks ago when I started to get funny beats and bumps a 48hr tape was done which showed some ectopic beats but nothing requiring any intervention. Last week the ectopics increase and Kardia was showing a range of readings possible AF, unclassified and nsr. Leicester who had seen the 48hr tape wanted nothing to do with it, and suggested that I contact Sheffield, therefore I sent Dr Sahu the Kardia readings, and the results of the 48hr tape and ask for his advice, all credit to him he responded even though he wasn’t obliged too. In the meantime my GP had prescribed 1:25mg of Bisiprodol. Dr Sahu agreed with this decision and stated that the readings showed atrial ectopics (his name for them) I saw the GP yesterday who looked at the most recent Kardia readings said there was no AF as P wave was present but there was pacs. He would like me to continue on the bisiprodol at 1:25mg to see if they settle and apixaban as although 90% of Strokes from Arrhythmia come from the laa 10% don’t. He also suggested that I go on how I feel not what the Kardia says. My heart rate is remaining between 54-70 even with the pacs. Previously withAF and Flutter it’s always been 120+

So warts and all do I regret my hybrid mini maze? not a jot, I feel well! I wish I was off all meds and blip free but im at least 95% better than before surgery.

My main regret in all of this is that My consultant in Leicester wouldn’t refer me to Mr Hunter and Dr Sahu in Sheffield, and now Leicester are doing their damnedest not to pick up my care.

I apologise for the lengthy post but felt it was important to give a balanced review of the last 12 months.

. Right only another 4 3/4 hrs to go then polling is done. If there’s any spelling, grammar errors I apologise I’m a little boggy eyed by now.

[Jalia]

It really doesn't seem like 12 months. You've certainly had an eventful year though. It doesn't sound too good what you have been through but you feel so much better and that's the important thing. Hope it will all be plain sailing for you very soon.

You must be quite shattered with a 6.15am start. Hope you had plenty of breaks !

[4chickens in reply to Jalia]

No breaks, you have to sign papers that you will work without breaks

[Jalia in reply to 4chickens]

😬😐

[jeanjeannie50]

Oh how lovely that you are feeling well, that's the most important thing. You say you converted from AF once after a glass of wine, that aids the thought that what starts an AF attack can also stop it. I too once reverted after weeks of constant AF by having a glass of red wine. Also ate loads or Doritos (blue pack) so who knows could have been the combination of salt and wine

Are you wishing you hadn't volunteered for the polling station? At 6.15am I'm still fast asleep. I guess you had to get up early this morning? Did many people come in early to vote?

Jean

[4chickens in reply to jeanjeannie50]

We opened at 7:00 and very few before 8:00. I was up at 5:15am

[mjames1]

Thanks for the report and sounds like you're doing remarkably better than prior to the procedure!

As to the ekg where Kardia showed "possible afib". Frankly, a GP should be the last person to comment on an ekg as they have very little training. Did you show those Kardia tracings to an ep and what was there comment?

Jim

[4chickens in reply to mjames1]

The EP Dr Sahu also says not AF

[Auriculaire in reply to mjames1]

You are in the US so not in a position to opine on what training UK doctors in general have in reading ECG s. Secondly there is no reason why some individual doctors at GP level should not be competent to read an ECG . They might have worked in cardiology before choosing general practice - this is not unheard of. Thirdly it is obvious from your posts that you have very little idea of the difficulties involved in getting to see any doctor at all in some parts of the UK these days- let alone a specialist.

[mjames1 in reply to Auriculaire]

I am well aware of the differences between the UK and US medical systems. Yes, it may be harder to see an EP under NHS, but many here do and 4Chickens did,

I stand by my comment about GP's reading an EKG. not only from my experience in the US, but from what others here have said about their NHS GP's.

And by the way, while this forum may be UK based its members are international. It's not just about the UK.

Jim

[Dancing135]

Lonely to know how well you are doing 4chickens keep up the good work I'm really pleased bless you xx

[Ducky2003]

That's gone by so quickly. Let's hope things settle for you and have you considered contacting PALS about your Leicester chap, who clearly has his nose out of joint?So much for doing what's best for patients rather than padding one's ego.

[Mrsvemb]

Well, you have certainly had an interesting journey, but really good to hear that you remain positive and feel 95% better than before the surgery.

All of our journeys are different, but I haven’t heard anyone have any regrets at having the (hybrid) mini maze.

[4chickens in reply to Mrsvemb]

No regrets not one

[CDreamer]

So glad things worked out for you. After being AF free for 4 years after PM implant, multiple infections over Nov, Dec & Jan had me worried as I had a lot of episodes. Once I had recovered completely- which took a good three months - everything settled down again so I am sure it will have been the infection + meds that gave you the hiccups. I am also pretty sure the PACs will settle as well although that may take months, they are horrible, pesky things!

[4chickens in reply to CDreamer]

Glad everything settled for you. Your right they are the pits and not helped by my own anxiety that the dreaded AF, AFL is back. Normally I’d say it’s great to be tuned into your body but on this occasion I wish I was less aware. Proven by if I’m busy I hardly notice them , yet if I’m sitting doing nothing I notice every beat and am constantly checking my pulse.

[MummyLuv]

one year and feeling 95% better, defo worth raising a glass of something fizzy on Saturday. As for your EP, you know my thoughts 🤬

[saulger]

Many congratulations on your one year anniversary. Well done and you are free of AFib.I've come across more posts of ectopic beats but they are benign typically and hopefully will also calm down, once you are more rested and over your recent chest bouts.

Get ready for my 18 months Tokyo Story In three weeks !

[4chickens in reply to saulger]

Can’t wait for your update. I’ve decided I’m going to ignore the rogue beats, and go on how I feel plus as long as my hearts not doing a sprint I’m ok. Sometimes a GP does talk sense as this was his advice

[saulger in reply to 4chickens]

We all get ectopic on and off. I get them sometimes after exercising, or when emotionally piqued, or when not sleeping well. I am looking forward to the 22nd May which is my 18 months milestone.

[waveylines in reply to saulger]

Oh wow can't believe it will be 18months Saul! Yay!!

[saulger in reply to waveylines]

Thank you Ange. Passed in a flash ! You must be 10 months now post- Hunter. How are things ?

[Poochmom]

I’m almost two years out from my Wolf MiniMaze and I still get ectopics now and then and sometimes a few fast beats maybe two seconds worth, but it never develops into anything. Dr Wolf said that's the whole point. To stop AFib in its tracks. It still tries but I say “ be off with your head”! 🤣

[waveylines in reply to Poochmom]

😂🤣😅 Love that!!

[SophieBella]

Thank you very much for the detailed update, but sorry to hear that you have still experienced issues. I also greatly appreciate all the advice you gave me previously and I wish you all the very best for the future. Good luck.

[Tangalle]

Congratulations Carole on your 1st anniversary. The ectopics are a bit of a pain, no pun intended, but I have been told they are fairly common and as a cardiologist told me, ‘as he would expect after heart surgery’. Most important thing is you feel well and 95% better than before.

[Ossie7]

on the whole , a positive story 4chickens . How did you get referred to Mr Hunter in Sheffield if your EP in Leicester didn’t refer you ? Was it a private consultation and then back on NHS waiting list ? Just curious as it’s a route I may need to take in the future if ablation no 3 doesn’t work longer term . I’ve decided no more standard ablations after this one , and really hoping it’s a case of 3rd time lucky . Take care x

[4chickens in reply to Ossie7]

Mr Hunter will accept a referral from your GP too, but mine wouldn’t step on the consultant in Leicester's toes. So I paid for a private consultation, expecting to have to fund the whole surgery etc. As soon as he discovered I was self funding he put me on the NHS list, which seems to be the way lots of folks go about it.

[Ossie7]

thankyou for that info and good luck with the pesky PACS moving forward x

[Ppiman]

That was good to read - warts and all! Such is life. Well done.

Leicester are very stressed from too few doctors, too many patients and pressure from NHS management to do yet more, so will likely want you to stay under the Sheffield team.

Steve

[4chickens in reply to Ppiman]

If I’m honest I think it’s more a case of ego as my EP in Leicester whom I’d seen for 10 years and 4 ablations, choose not to respond when I originally asked to discuss Sheffield with him. So when this now has come across his desk he’s had a bit of a hissy fit. The original cardio at Leicester who saw the 48hr tape was enthusiastic but then consulted with my old EP, and suddenly its talk to Sheffield who officially have discharged me and only giving advice to my GP as a favour. It’s a ridiculous state of affairs. I used to work shop floor nhs in an inpatients mental health unit so have great sympathy with the pressure they’re under, but care should never be denied due to bruised egos.

[Ppiman in reply to 4chickens]

Oh dear. Well we all suffer with bruised egos at times, I suppose, but, yes, it's unprofessional in a health care sceanrio, for sure. I'm under Dr Sandilands, there, and, so far feel he's a wonderful doctor. I do know the pressure is intense. Btw, I've heard they've got themselves a new ablation machine called a pulsed field "Farapulse". As I shall likely e needing one in the future, I was pleased to hear that.

Steve

[4chickens in reply to Ppiman]

Same consultant and before this I would have whole heartedly agreed with you. Yes I read about their pulse field gizmo.

[Ppiman in reply to 4chickens]

I’m seeing him next week after a 48-hour Holter!

Steve

[4chickens in reply to Ppiman]

Im actually quite upset that my professional relationship broke down with him, I would have much rather gone to Sheffield with his support and continued to see him for my follow ups. Good luck with the results of the 48hr tape.

[Ppiman in reply to 4chickens]

Yes, I can imagine how you feel and it isn't right that it should have happened. I take these things very personally. Many years ago, I had a fall out with a GP and only quite a while later did I learn that he was going through personal and family problems.

Having worked with doctors for many years, I soon came to take them from the glowing pedestal I had always put them on in earlier life. It is a truly wonderful profession and I would have dearly loved to have been clever enough to have become one, but they are like us all, full of foibles!

Steve

[waveylines in reply to 4chickens]

Awwww do you think he won't recant at all.. not even with time? Some people take things far, far too personally.....sounds like he has done this. Bruised pride. He really should be celebrating the sucess you are. Not see it as a smack in his face. Such a shame as you clearly value him. I hope it can be sorted.

I had this with a plastic surgeon who was outraged when I said I was going for a second opinion. He ranted and raged at me. And of course in the end it was the other surgeon I chose. Luckily I haven't had to come back to him.

[Rainfern]

Always good to have your news 4chickens and thanks for your contribution towards keeping democracy alive and well! I hope the heart soon settles itself.

[ozziebob]

Thanks for the update, always welcome.

And I like your "boggy eyed"!

Perhaps a relative of the more familiar (to me) "bog eyed', and "boggle eyed".🤔😄

[4chickens in reply to ozziebob]

Probably I have a habit of making words up its a standing joke in our household 😂

[Ducky2003 in reply to 4chickens]

I'm in the "boggy" camp as well. May be a Midlands thing. 😊

[saulger in reply to 4chickens]

Carole that's why I love you. Don't hold back !!!

[4chickens in reply to saulger]

😂I thought I was being quite restrained. My patients always wanted me in their ward round, as they said I would alway stick up for them if felt the consultant was in the wrong and going against their wishes. Mind you they also mentioned that if I felt as a patient they were acting in a rash or unreasonable manner, they’d know to that too. It always amazes me that I survived 27years in mental health without getting sectioned myself 😂

[saulger in reply to 4chickens]

I always felt that you say what you feel, so please go on inventing words.

[waveylines]

Am delighted for you....truly! I know you've has some hiccups on the way but it was major surgery and just such a shame you got an unrelated nasty persistant chest infection that turned into pneumonia. Would challenge any body so not surprisingly it set you back a bit. Despite this the difference between before op and now is amazing. 🥂🍾 cheers to lots of fun time ahead! 🥳🥳🥳

[JFJ131]

hi … just wondering if you would mind explaining what this means …’started again on ‘apixaban as although 90% of Strokes from Arrhythmia come from the laa 10% don’t’?

[4chickens in reply to JFJ131]

Your left atrial appendage is a small part of your heart and is where 90% of strokes caused by AF originate, by removing or clamping it of you minimise the risk of a stroke caused by AF

[kitenski]

4chickens How are you doing nowadays? Just re-reading this as I've been to see the team at Sheffield today after a GP referall. My "local" cardiology unit didn't seem to refer me but the Sheffield team seem to think they can help me after 2 failed "standard" ablations!

[4chickens in reply to kitenski]

Hi kitenski, that’s fantastic news.

I’m ok thank you. Still getting AF occasionally but self terminating. Leicester have now seen me but this wasn’t a positive experience. It was a bit of a told you so and all that’s available is pace and ablate. They did agree to a toe and results slowed laa was well sealed so stopped apixaban.

On a good note I’ve recently been in glenfield (Leicester) with sepsis, rvs, pneumonia and life threatening asthma. They filled me full of various drugs all of which have a tendency to cause arrhythmia, my heart behaved beautifully throughout.

I don’t regret for one minute going to Sheffield, and firmly believe that a simple top up ablation of a breakthrough area is all that’s required.

The team at Sheffield are second to none.

[kitenski in reply to 4chickens]

Wow sounds like a bit of a journey and life threatening asthma doesn't sound like a "good note" but fantastic to here you are doing well and that the heart is behaving!

Apologies for not being up on my TLAs, but what is a TOE? How often is your AF? Pretty good that is self terminates unless it goes on for weeks I guess!!

[4chickens in reply to kitenski]

A toe. A trans-oesophageal echocardiogram is effectively a camera down your throat to look at your heart. I get af roughly about every 2 months for anything between a couple of hours and longest was 22hrs