Demoralised Duck: Good afternoon... - Atrial Fibrillati...

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Demoralised Duck

Ducky2003 profile image
Ducky2003
โ€ข89 Replies

Good afternoon campers, Hi De Hi

Firstly, a Happy New Year to you all. Hope that you have all had a super Christmas.

I must apologise for my absence. Its been a mix of finding time to give you all an update and feeling sorry for myself ........ and, if I don't type it or speak about it, its not happening head in the sand kinda thing.

Get yourself a cuppa and a biscuit or even a sandwich and here goes.........

Well, I think the last time I posted an update was following my last nap and zap (I pinched that from someone else) in August. All was ok until about 2 weeks afterwards when the heart thought it had behaved for long enough and would start doing the Fibby Fandango again.

I duly informed my EPs secretary and he gave me a tinkle a couple of weeks later. I was still clinging to the blanking period like a barnacle on a whales backside but the consultant, rather unceremoniously chiselled me off said backside (metaphorically speaking) and said he felt that the ablation had not been a success. He feels that my AF has become particularly stubborn and although pace and ablate remains the last resort still, he feels something more aggressive is required.

He said that I could have an RF ablation on its own and he hoped that would give a better chance of success or he would recommend my considering a Hybrid ablation. I had seen mention of these but wasn't sure what was involved. He started with a brief explanation but at the point he mentioned "surgeon" I felt the colour drain from my cheeks and something else draining from my other cheeks.

He advised that he would arrange for me to have a chat with the surgeon, who is a nice chap. I said I'd rather hoped he would prefix a description with skilled or renowned rather than "nice". My postman is "nice" but I wouldn't let him loose with my chest........... well, maybe the chap who does his holiday cover.

Anyhoo, I finally had my echo a couple of weeks ago and I am seeing the "nice" surgeon for a chat on Tuesday so will probably get the echo results then. I had an email and text through a couple of weeks ago, one for a blood test following seeing this chap and also an x-ray. I rang his secretary to ask what that was all about and she said it was in case I agreed to go ahead with the operation after my chat.

I assured her that I would not be agreeing to anything at the chat. I would be going armed with my list of questions and would then take some time to consider the ins and outs (literally!).

Also, I got my EP to agree to another nap and zap to try and tide me over until something else is done so that is being done mid Jan. I have days where I have felt as rough as a badgers proverbials so just wanted to try and get back into NSR in the interim.

If anyone has had any experience of the Hybrid I would love to hear from you. I did find a thread with a lady who had one recently and she kindly said I could message her but I can't find the bloomin thread!!! Or, if anyone can think of any questions to ask the "nice" cardiac surgeon, all suggestions gratefully received, although I have got the obvious ones covered............ how many of these have you done? What is the success rate? How many folk have you killed? etc.

My EP said that patients he has referred with particularly stubborn AF like mine, have done very well after the Hybrid and 2 years on are still in NSR and have been, essentially, signed off his books.

I have been really down about all this as I suppose, like everyone who has an ablation, you hope that you will be sorted after one bash at it so no more net underwear or leg the colour of an aubergine, but there you go.

Well done to everyone who has made it this far without a nap or alcohol and look forward to any info/experience anyone has on the Hybrid.

Ang.

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Ducky2003
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BobD profile image
BobDVolunteer

Hi Ang, if you had Cryo ablation first time it is not uncommon to need an RF touch up later. The cryo balloon only has limited use as it can only work where it touches and there may be other areas firing off which can only be accessed with the smaller RF catheter. You know how to contact me so if you want to talk it through I'm always here for you my friend.

Bob.

Ducky2003 profile image
Ducky2003โ€ข in reply toBobD

Cheers Bob. I knew the drill but hoped I would be one of the lucky few who are all sorted after one go. First time I was trying to avoid getting touched up ๐Ÿคฃ.

BobD profile image
BobDVolunteerโ€ข in reply toDucky2003

Vive non PC eh. Love it.

Ducky2003 profile image
Ducky2003โ€ข in reply toBobD

I try to avoid PC.๐Ÿ˜.

Ducky2003 profile image
Ducky2003โ€ข in reply toBobD

Ps.......... any other pertinent questions you can think of to add to my wallpaper roll list?

Jalia profile image
Jalia

I enjoyed the read ! Seems a bit drastic to go for hybrid after just cryo without having RF first but then I'm not your EP so what do I know !!I shall follow with interest !

Best wishes

J

Ducky2003 profile image
Ducky2003โ€ข in reply toJalia

I think its because my AF is particularly stubborn. He said they only offer it to certain patients, who they feel will benefit more from it because it is so invasive. And bravo for getting to the end of my missive.๐Ÿ˜Š.

Jajarunner profile image
Jajarunner

Chin up, ducky. I know just how you feel. I'm now waiting for number three ablation with promised "moderate" chance of success. It doesn't feel you with hope, does it!

I'm sure your nice surgeon will be excellent, let us know how you get on xxx

Ducky2003 profile image
Ducky2003โ€ข in reply toJajarunner

Its a case of which chin at the moment ๐Ÿ˜€.

Jajarunner profile image
Jajarunnerโ€ข in reply toDucky2003

Me too, after the Christmas indulgences. I'm currently back in A&E just had my fourth DCCV in 3.5 weeks. So much for a happy new year for us two ๐Ÿ˜ž. Get well soon xxxx

Ducky2003 profile image
Ducky2003โ€ข in reply toJajarunner

Oh blimey. I've never had to have one in A&E as yet, just elective ones and a couple during my ablation. I hope that you are now back in NSR and that there is a plan of action to stave off number 5.

Take care and best wishes.x

Jajarunner profile image
Jajarunnerโ€ข in reply toDucky2003

I'm confused. It was 4th in three months. Second in 24 days. Blame the sedative!!!

It really is the most simple procedure. I wasn't even aware it had been done this time. I thought I was still waiting!!! Very confusing ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Ducky2003 profile image
Ducky2003โ€ข in reply toJajarunner

Not as bad as one of the women on the ward when I had my last one in August who asked me the time every 5 minutes and wasn't sure if she'd had an ablation or DCCV ๐Ÿ˜€

jeanjeannie50 profile image
jeanjeannie50

I love reading your posts Ducky, you always make me laugh.

I went for my first ablation thinking it was going to cure me, then went for a second and third. In truth I wish I'd never had any, but changed my diet drastically instead - just to see if that would help. I don't think we were aware back then of diet and how it could promote AF.

I'll be interested to hear what your EP has to say.

Good luck.

Jean

Ducky2003 profile image
Ducky2003โ€ข in reply tojeanjeannie50

I had actually changed my diet after The Beast first kicked in and lost over 4 stone. Unfortunately, since the ablation, about 2 has gone back on so I need to put my big girl pants on (literally) and get back on track.It's the actual surgeon I'm seeing this week. The EP seemed quite keen to recommend this.

Perhaps he gets Frequent Fryer points from the Cardio Thoracic team ๐Ÿ˜.

Paulbounce profile image
Paulbounce

Good luck Ducky.

My postman is "nice" but I wouldn't let him loose with my chest........... well, maybe the chap who does his holiday cover

It's not postman Pat is it heh.

Paul

Ducky2003 profile image
Ducky2003โ€ข in reply toPaulbounce

๐Ÿ˜. No. We usually have Postman Andrew but occasionally a very attractive holiday cover, whose name I'm yet to find out.๐Ÿ˜

Paulbounce profile image
Paulbounce

It's all in the delivery Ducky ;-)

Ducky2003 profile image
Ducky2003โ€ข in reply toPaulbounce

So very true Paul ๐Ÿ˜.

wilsond profile image
wilsondโ€ข in reply toPaulbounce

๐Ÿคฃ๐Ÿคฃ๐Ÿคฃ

Paulbounce profile image
Paulbounce

I hope he doesn't get the sack.

I'll get my coat. Good luck with it all Ducky and have a Happy New Year.

Paul

Ducky2003 profile image
Ducky2003โ€ข in reply toPaulbounce

๐Ÿ˜€๐Ÿ˜€๐Ÿ˜€

lovetogarden profile image
lovetogarden

lol! The holiday cover postman! He might be good for your heart. ๐Ÿ˜‚

Seems drastic to go to the hybrid procedure so soon. Glad youโ€™re scheduled for the RF touch-up first. But good to explore all the options!

After my 3rd RF ablation, I was told I had a particularly stubborn heart. But that dr managed to zap all the angry bits that had reconnected after the 2nd ablation. (Must say, Iโ€™ve doubted the patience/skill of the dr who did the first 2, not sure he did as thorough a job as he should have. But Iโ€™ll never know, my current EP is much too discreet to ever criticize a colleague outright.)

Paulbounce profile image
Paulbounceโ€ข in reply tolovetogarden

LTG wrote

"The holiday cover postman! He might be good for your heart"

I wouldn't bet on that one. Stick with postman Andrew !

Paul

Ducky2003 profile image
Ducky2003โ€ข in reply tolovetogarden

Not actually scheduled for anything other than the cardioversion next week. It appears that the choice will be just RF or this hybrid one.................. unless my echo has shown up anything.My EP did not perform my cryo, He was scheduled to but then I was booked with another a couple of days prior. Then, on the day, another threw his hat into the ring. ๐Ÿ™‚.

I am sorry to hear youโ€™ve had so much trouble. I guess Iโ€™m the โ€˜ladyโ€™ youโ€™re referring to, nearly didnโ€™t recognise myself there ๐Ÿคฃ๐Ÿคฃ๐ŸคฃIโ€™ve tried to attach the leaflet I was given about porthole surgery, but I can only get photos to work - I suggest you donโ€™t look at those unless youโ€™re really really keen on the op, although my armpit looked very much like the one Johnmiosh put online when he had his!

You can get the information by googling, and the Afa leaflet also has a page on chest ablation

I would want to know who is going to project manage the procedure. Someone at Barts produced a paper on how badly hybrids are managed because they involve two sets of procedures, and recommended the EP take the lead. I would agree with this. I had mine done in Sheffield and I had to keep track of what was happening and reminding people what I was having done , things like would it be in a catheter lab rather than a theatre and then had one been booked and for long enough; were both consultants still booked and for the same day; which admission procedure would they be following; how long would I be in and would the recovery unit be expecting me.

You might also want to ask how many incisions they will be making, will they all be on the lh side, will they collapse one lung, are they planning a left atrium appendage clip.

Your hospital may be well prepared for hybrids, but mine certainly wasnโ€™t and I would ask the questions!

But mine all went fine on the day. Donโ€™t be scared of the surgery. Some of the staff had been there for my two previous ablations and all were very friendly. I just relaxed and left them all to it.

My attitude was if it was on offer I was going for it, and Iโ€™m really glad I did!

Let us know how you get on ๐Ÿ˜‰

saulger profile image
saulgerโ€ข in reply to

Dear Marjoram27. Wonderfully detailed report.

I am considering the "Hybrid" ablation, and wanted to ask a few questions:

How long ago you had it done, and are in NSR since ?

Also, how long was the recovery period ?

Finally, are you still on anti-coagulants and rate / rhythm medications ?

All the best and a very happy and healthy 2022.

Saul

โ€ข in reply tosaulger

Hi SaulBest wishes for you in 2022 too!

My procedure was on 30th Sept. It certainly kept me to my bed for a few days. I developed an infection and a pleural effusion, but antibiotics and oxygen and breathing exercises meant that didnโ€™t really hold me back. I was in for 5 days.

My heart felt better immediately even though I felt weak and bruised. I recovered remarkably quickly, started short walks a week later, went for two city breaks in October, and a week away in November, nothing dramatic but I climbed Glastonbury Tor quite easily. Iโ€™m still hoping to go skiing if theyโ€™ll let us in!

Iโ€™ve had no afib. Iโ€™m still taking all my meds though, and unsure what my view is re an approach to coming off them. My previous ablations were equally successful until I came off amiodarone. I also take bisoprolol and apixaban currently. I want to take it carefully this time.

Iโ€™m waiting for my EP follow up. Iโ€™ve not seen him since before the op.

Good luck, whatever you decide!

saulger profile image
saulgerโ€ข in reply to

Thank you Marjoram27. I was sorry to hear of the complications following surgery.I understand that there are more risks associated with VATS and I have to research more about the long-term success rate for staying in NSR compared to CA.

I feel that haven't yet met the right medication to keep me in NSR and maybe give it a go first.

It is frustrating for someone who was exercising regularly to have to forgo because it results in AFib episodes, even at light effort. No easy answer !

Thanks again. Saul

โ€ข in reply tosaulger

Iโ€™m sorry, Saul, I tried to find out more about VATS ablations, how many are carried out/ success rates etc and found very little so I canโ€™t help there. What I did find said that they were no more successful than the other type, but they were old studies. You may find a drug combo that works for you, Iโ€™m sure some people do. I hope 2022 is a good year for you.

saulger profile image
saulgerโ€ข in reply to

Thanks again Marjoram27, I hope I didn't inconvenience you.

Yes, in my search, I came across (probably) the same report where the outcomes were fairly similar, but there were more complications in the VATS camp, and even a mortality.

I have been following the WMM (Wolf Mini Maze) Facebook group - a forum of people who are having, or have had, or are just interested in the specific mini maze procedure pioneered by Dr Wolf of Debakey Methodist in Houston, Texas.

Many very good reports of being AFib free after more than a decade and something like 95% success rate (duration not specified).

It is very expensive, at $150,000 for the uninsured.

I am having my second echocardiogram tomorrow (first was in 2018 when I was first diagnosed with AFib and the heart was said to be structurally OK).

I hope that the ensuing episodes of AFib have not enlarged the atria or caused heart muscle weakness, in the meantime.

Again, best wished to you and yours for 2022, and thank you for your concern. Saul

Ducky2003 profile image
Ducky2003โ€ข in reply to

Thank goodness you found your way to me Marjoram.

Thank you for all of the information. There were no photos attached but its probably just as well.

I am under the care of UHCW, which is supposed to be a cardiac centre of excellence and they do the hybrid in 2 separate stages, the outside first and then the RF about 3 months later.

Thank you for the suggested questions and for advising about the AFA leaflet ......... I'll have look.

I am assuming it will be done under GA?

I will report back as soon as possible and good to know that you are doing so well.

Best wishes

Ang

โ€ข in reply toDucky2003

Hi Ducky. I hope youโ€™re not worrying and reading too much stuff - I prefer to distract myself, but Iโ€™m easily distracted! Iโ€™m sorry if Iโ€™ve misled you as my op was one 6.5 hour combined job, not two stage.

The question of who is organising it and whoโ€™s in charge wonโ€™t apply to yours. Yours will be more like the one johnMioh had done.

There are pros and cons and I assume your hospital is proposing the two stage for a reason. Possible question?

One advantage of the surgical op for me was that they gave me the GA almost as soon as I got in, whereas the prep for my previous ablations took ages, making polite conversation while stifling the urge to pull everything out and run away screaming.

When I went to โ€˜meet the surgeonโ€™ they had a few other tests for me as well, including a breathing test. The whole thing took hours, but youโ€™ve just had some of them already.

And youโ€™re right, I didnโ€™t think youโ€™d want an unsolicited photo of an armpit with three holes and peeling skin glue!

All the best, Pat

Ducky2003 profile image
Ducky2003โ€ข in reply to

Thanks PatYes, I remember reading that you had yours all in one go. When my EP first mentioned it, I shrieked "What, at the same time" and that was when he mentioned it was done separately by them. This is because they want to upset the heart too much in one go so that they know any AF that surfaces is due to signals rather than as a result of the op............or that's how he explained it to me.

I know what you mean about the pre ablation preparation. After being a gibbering wreck for days before, I was remarkably calm on the day until they took me into the lab and then all the people and screens and equipment freaked me out, so they were all chatting to me about feet (Im a foot health practitioner) in a vain attempt to distract me,๐Ÿ˜€.

They have lined up a blood test and x-ray as well tomorrow but I did tell his secretary, it would probably be a waste of time having them tomorrow as I won't be signing up to anything without thinking it over for a while. She just said that they could be cancelled if I don't agree but I just thought, what a waste of appointments which could have been given to someone else.

I nearly posted a photo of my completely purple leg following my ablation but didn't want to scare everyone.๐Ÿ˜€.

Thank you so much for your help.

Globe-J profile image
Globe-J

Hi Ducky,

About five years ago I opted for an open heart surgery to get rid of the pest (AF). Somewhat unusual, since I had no other heart problems. This procedure allowed the surgeon to perform an effective Maze Procedure.

Glad to say, I have been free of AF ever since. However, even this drastic approach does not succeed every time. I understand, there is about 5% failure rate, for apparently unknown reasons.

Above all, please do not give up. Ignore the naysayers and I am sure that you will find a solution.

Best wishes, and a happy New Year from OZ

J (-:

FancyPants54 profile image
FancyPants54โ€ข in reply toGlobe-J

Goodness. Drastic. My Dad had that done at age 80. It didn't work though. He was poorly for a long time after it.

Ducky2003 profile image
Ducky2003โ€ข in reply toGlobe-J

My goodness, that was really in at the deep end. I'm not sure that they would do that here, unless you had other issues requiring an op.Glad to know that you are doing well.

saulger profile image
saulger

Hello Ducky !

Marjoram27 gave a wonderful summary of her procedure when the outside of the heart and the inside are both ablated at the same time.

You might want to check out he WMM (Wolf Mini Maze) with 95% claimed success rate.

It's in the US and without insurance costs $150,000.

Like a "Hybrid" without the scarring inside the heart.

All the ablation to the nerves is done outside of the heart.

The left Atrial Appendage is clipped so no more anti-coagulants and no more rhythm and rate control medication.

The Ganglionated Plexi is also ablated (source of errant electrical impulses).

The chest incisions are small and under both armpits into the thoracic cavity around the heart, and the lung is partially collapsed. No open heart surgery and no bypassing the heart.

The recovery can be quick and some patients report skiing after seven weeks.

I hope that you (like me) will resolve the dreaded AFib.

A very happy and healthy 2022. Saul

Ducky2003 profile image
Ducky2003โ€ข in reply tosaulger

Hi. I'm not sure that anyone does the WMM outside of the US and I certainly haven't got pockets that deep ๐Ÿ˜€.I haven't heard of the Ganglionated Plexi. I might drop that into conversation tomorrow so that I sound like I know what I am talking about.

Thank you for the info and best wishes to you.

saulger profile image
saulgerโ€ข in reply toDucky2003

I did come across Brits on the WMM site, wanting to know more and some who have had a virtual consultation with Dr Wolf.Just in case they ask you more tomorrow, the Ganglionated Plexi are fatty tissue around the heart where errant electrical signals can cause AFib, and they are usually ablated during thoracic Maze procedures, along with the other troublesome cells.

Here's to you. Saul

Ducky2003 profile image
Ducky2003โ€ข in reply tosaulger

Thanks Saul.

Bonnie58 profile image
Bonnie58

Hello Ang, I have been wondering what you were up to. I am sorry you hopped back on the AF Roller-coaster so soon. As my AF is finally pretty well controlled with pacemaker and meds I can't contribute to the discussion on procedures but I really do wish you all the very best with your consultation and any treatment going forward. Elaine x

Ducky2003 profile image
Ducky2003โ€ข in reply toBonnie58

Thanks Elaine.Its been very disappointing ride but here's hoping that I can get sorted.

Will report back.

๐Ÿ™‚

Singwell profile image
Singwell

Oh Ducky - that's a long and pained squawk!! I had been wondering about you. I guess it's best to be practical. Your ablation hasn't been successful- question is why? Is it just the need for a top up procedure, or does the level of 'success' indicate something more radical. That's your salient question and I'd say you need a telephone consult with your EP - the one who did the ablation- to find that out. That seems to me step 1 so push for that. Then you can consider your options. They seem to be saying they're not confident in a repeat procedure, which is fair enough but it's also fair you should know why. At least - if that's the case - you could be looking at 2 options - pace and ablate, or the mysterious 'hybrid'. Ultimately it's about what will make your life better. As one who's own ablation hasn't done the job, that's how I see it. My situation is more comfortable and manageable than yours, so I know we can't compare really but in the end it's answering that simple question- what do I need for my best life? Hope that's useful and a massive ๐Ÿ‘to you.

Ducky2003 profile image
Ducky2003โ€ข in reply toSingwell

Hi there.I've already spoken to my EP, who is the one recommending something more aggressive.

I doubt whether the EP who did the ablation would know me from Adam.

They did pick up during the ablation that there was a moderate issue with a couple of the valves and that is what may have caused the AF but my EP didn't agree with that.

I think, from what I can gather, that because the PVs are not a perfect round, there can be gaps left for the rogue signals to get through.

Also, when I had an x-ray in July, that did show that my heart was enlarged, which my EP though was AF related so I think a number of factors have conspired.

Finally having my echo a couple of weeks ago has got me nervous about the results now, which I guess I will get tomorrow.

As I said above, the pace and ablate is last resort due to my age as much as anything else .............not many other things I'm considered too young for ๐Ÿ˜€. He did say that I can just have a normal RF ablation but that there is a higher success rate with the hybrid for particularly tricksy AF.

I thought that you were going along quite nicely so what's happened with you?

Are you looking at another ablation?

Sorry if you are going through the mill again.โ˜น๏ธ

Singwell profile image
Singwellโ€ข in reply toDucky2003

Thanks for explaining and sorry I missed some important details in your report. Clearly should've had my Wheatabix! I guess it's good they're thinking of best options for you. Fingers crossed for results of the echo. As for me I'm doing OK - I still get AF about every two months but symptomatic and they don't last as long. However with the last two BPM climbing up again so I think I've probably reached the top of the curve so to speak. Still on meds too- only managed to cut my evening dose by half. Managed to get a phone consult with my EP (a battle in itself!)back in October. Given the issues we had on the day with my pain response he agreed a top up was in order. So, nobody's fault and right now I can live with it as is. But with AF the likelihood is it'll get worse and I'd like another shot. He's promised me a GA next time. Who knows when though, with the issue of country wide bed shortage?

Thankful for the small improvements and hanging on to that in the meantime

Ducky2003 profile image
Ducky2003โ€ข in reply toSingwell

Oh, sorry to hear that Singwell. I had hoped that you would escape the top up.To be fair to my EP he made no promises or led me to believe that the cryo would be a complete success. I had just hoped that I would be one of the lucky few who were sorted at the first attempt but I should have known better.

Apparently, the waiting list for hybrid is shorter (not sure by what degree) but if the covid numbers keep creeping up, who knows what will happen to lists again.

Fingers crossed that things stay manageable for you until you can be treated again.

๐Ÿ™‚

Singwell profile image
Singwellโ€ข in reply toDucky2003

Thank you. Hope is a good thing and meanwhile we find things to make life better where we can. I'm in a better place than some.

Nannysue1 profile image
Nannysue1

Hi Ang, it's good to hear from you and to see that even though you're having a rough time, you haven't lost your sense of humour. I havent heard about the Hybrid, I'm going to Google it.

Can I ask how bad you feel while you are in persistent AF. ? What is the "range" of how your heart jumps around? and how debilitating is it for you?. Sorry so many questions but just wondering if you have considered staying in permanent AF?. Or is this just not a reasonable option for you?

I know that Jean and some others on here have opted to stay in permanent AF and have learned to live reasonable lifestyles?.

After talks with my EP , that's what I've decided to do as well.

Sending you hugs, its horrible when this rotten condition overtakes life isnt it.

Take care and good luck with the decisions ahead of you. Sue x

Ducky2003 profile image
Ducky2003โ€ข in reply toNannysue1

Hi SueI don't really feel much in the thudding department to be honest. I tend to get chest discomfort, I guess akin to angina but its not angina.

I also get tired and breathless at times and pulse can be raised without much effort.

I can cope with so much but I don't think its probably an option for me to just stay in AF as it has enlarged and my EP said its obviously not coping with the AF as well as it was previously.

I know that folks have said on here that AF is not life threatening but it can lead to issues that are.

Thank you for your good wishes.

Ang

4chickens profile image
4chickens

Hi Ducky, Iโ€™ve also been looking into hybrid ablation, but have a different obstacle to overcome. I contacted Liverpool heart and chest hospital about this but they need a referral from my EP in Leicester, who is reluctant to give on wanting to try yet another ablation first even though last time it was going really well apparently until they touched the wall of the heart which put me back into nsr so it was guess work from then on (his words) this ablation lasted 6 months before back in af then afl. If this next attempt doesnโ€™t help heโ€™s preferred option is pace and ablate. Iโ€™m considering paying for as private consultation at Liverpool to see if hybrid is an option. Id advise you to write your list of questions on a long roll( kitchen paper is better than toilet roll, your pen doesnโ€™t go through and looks more professional) good luck seeing the nice surgeon and just think your relief postman if it all gets to much.

Ducky2003 profile image
Ducky2003โ€ข in reply to4chickens

Hi.Are you under the Glenfield then as they are supposed to top notch aren't they? I know that my EP did some of his training there.

Mine is still talking pace and ablate as a last resort option due to my age .

I was thinking of using wallpaper for the list but that would probably frighten the guy.

๐Ÿ˜€

4chickens profile image
4chickensโ€ข in reply toDucky2003

Hi, yes Iโ€™m under glenfield Iโ€™m assured they are very good but as I have nothing to compare it to it hard to say, personally I find them a little patronising and very dismissive. It really pains me to say that as I worked for the nhs for 24 years, until I retired last March. If you go for wallpaper donโ€™t choose a heavy pattern or ready glued. Good luck and let us know how you get on

Ducky2003 profile image
Ducky2003โ€ข in reply to4chickens

Oh, not good. I know that they have been responsible for some recent pioneering procedure but when I mentioned it to my EP a few months ago, he just said if he thought I'd get better treatment or more chance of success, he would have referred me there happily but he didnt think I would. I'm off to Leicester on Friday for lunch with a friend. Said it was better to get it in before the cardioversion next week ....... just in case ๐Ÿ˜.

Will keep everyone posted.

4chickens profile image
4chickensโ€ข in reply toDucky2003

Enjoy your lunch.

Cally53 profile image
Cally53

I love reading your posts Ducky. I wish I had your holiday cover postman, he sounds much nicer than mine! ๐Ÿ˜œ I recently had my 2nd ablation and have been told that I'm still getting a signal from higher up in the atrium. It is early days yet, and I'm hoping that my episodes will be a lot less frequent and I can deal with them, otherwise I'll be looking towards my 3rd! I hope that whatever you decide, it works out for you.

Cally

Ducky2003 profile image
Ducky2003โ€ข in reply toCally53

Thank you Cally.I hope that your signal clears off and things settle for you. Hopefully, you won't need number 3.

๐Ÿคž

Cally53 profile image
Cally53โ€ข in reply toDucky2003

๐Ÿ‘๐Ÿคž

wilsond profile image
wilsond

Ooh Ducky

Well firstly let's hope your ' nice' surgeon can give you more insight into the in and outs ( so to speak) of the Hybrid thingy. Questions I might ask apart from the obvious ones as you say ( how many people have you killed, should I update my will etc) would be what to expect in terms of recovery , why does this work compared to ablation and will it need repeating?

I'd also want to nail down after care,who and how do I contact if I feel unwell or need support?

I'm pretty sure I will need my aortic valve replaced one day,as it's the wrong shape and they pack up early apparently.

This is open heart, too ,and in the wee small hours one dwells on it... So guess you feel the same.

When you are all done with your jaunts to hospital,if ever you fancy meeting up for a fluffy coffee let me know!

We can have a jolly time comparing those amusing AFib tales for hours !

Keep your chin up gal and please keep us posted ๐Ÿ˜˜โ˜•โ˜•

Ducky2003 profile image
Ducky2003โ€ข in reply towilsond

Hi thereThanks for the suggestions. Have added to my list.

They picked up some dodgy valve activity when I had my ablation so I'm nervous about what the recent echo results are going to show.

Definitely up for a fluffy coffee after the cardioversion so will PM you after to sort something out.

I will try and keep all the chins up,๐Ÿ˜„

wilsond profile image
wilsondโ€ข in reply toDucky2003

Good luck for today and hope you get an action plan of some kind together asap. A focus will help,as everything is swirling ATM I expect.I know I would be like a headless chicken!

Yes indeed when the dust has settled,just PM and we will arrange a meetup.

Fingers knees and elbows crossed ....,๐Ÿคž๐Ÿ‘

Tricia239 profile image
Tricia239

Good luck Ducky. Please keep writing, you make my day. I thought my first ablation had been a success until I needed a G A for a mastectomy, then you begin to think if one thing doesnโ€™t get you another will, which I suppose is true, but Iโ€™m not prepared to surrender yet!

Ducky2003 profile image
Ducky2003โ€ข in reply toTricia239

Oh no, so the GA triggered the AF again?You are going through the mill with ablations and mastectomy but you seem to have a positive state of mind..............I try to be but sometimes, as I'm sure you will know, you just think "Arrrrrrrrgh"

Mrsvemb profile image
Mrsvemb

Oh Ducky itโ€™s always good to read your amusing posts and I am pleased to see that with all of your problems you havenโ€™t lost your sense of humour.

I canโ€™t help regarding your potential procedure or ablation I am afraid. I just wanted to wish you all best for your appointment and whatever option you decide to have.

Hereโ€™s to a happy, healthy and safe new year and may 2022 bring you better health.

Please let us know how the appointment goes.

Val

Ducky2003 profile image
Ducky2003โ€ข in reply toMrsvemb

Thank you Val.Will keep everyone posted.

๐Ÿ˜€

SuziElley profile image
SuziElley

Oh Ducky, Iโ€™m s9 sorry to read this. And yes, I got to the end, no trouble! As with others, Iโ€™m no expert but sounds to me as though youโ€™ve got a very sensible EP so be guided by him. See the Nice Man and quiz him with hundreds of questions. Make sure you write down his answers! Nothing worse than getting home and then wondering what heโ€™d said to number 87!In the meantime, untangle the knots in your knickers, put your feet up, find something completely silly to put on the gogglebox and try to relax. I know, easier said than done. But at the moment you just need to rest and get writing that list!

Take care and let us know how it all unfolds xx

Ducky2003 profile image
Ducky2003โ€ข in reply toSuziElley

Thanks SuzyPants are unknotted.

I'm more nervous about what they may have found on the echo and whether that will impact on further treatment.

I will keep everyone informed.๐Ÿ™‚

SuziElley profile image
SuziElleyโ€ข in reply toDucky2003

Everything here is crossed for you Ducky. Letโ€™s hope they get you sorted xx

johnMiosh profile image
johnMiosh

Hi Ducky, sorry to hear this. I had the hybrid in April and October 2017. The two parts had to be between 3 and 6 months apart. The surgical part is much more invasive than a catheter ablation. I was devastated after the first part. Abslolutely knackered, unable to walk 20m unaided and still in AF. I discovered I needed more patience and within four days, I was AF-free and walking a mile round the block. I have has no AF since then, now up to four and a half years. When I went for the second (RF) part, I was toldvthey had dealt with some flutter and a partial reconnection of one pulmonary valve, neither of which was causing me a problem at the time.A few months after the procedure I was pleased, but said that due to the level of debility it caused I would be reluctant to recommend it to others. Having spoken to the surgeon in charge of the research project, the results seem so good and as I appear to be completely back to Jordan, I am now wholeheartedly (!) recommending it.

Check back through my posts and feel free to direct message me if you want any more information/reassurrance.

Ducky2003 profile image
Ducky2003โ€ข in reply tojohnMiosh

Hi JohnI have seen your name mentioned on other posts.

I will look back at your old posts, thanks.

When you mention the level of debility, do you mean the first 4 days after the first part or did you have any further issues after?

Was your AF very stubborn for you to be offered the procedure as that is why my EP is saying its being offered to me. Had you had previous ablations?

Sorry, I should just read your posts rather than bombarding you with questions.

Thank you so much for replying and you may well regret saying I can ask for further info .๐Ÿ˜€

johnMiosh profile image
johnMioshโ€ข in reply toDucky2003

The first day was in intensive care, the second they taught me to walk again. The third I left hospital with a bag of drugs that looked like a weekly shop. The fourth day I managed an exhausting walk around the block, but improved very quickly after this. Was back at work and cycling along the canal after 14 days.

The catheter ablation was easy, I felt brilliant as soon as I came round from the anaesthetic.

I had no previous ablations, but had one cardioversion that worked for ten days My heart was slightly enlarged, but I fitted into the criteria for the clinical trial being held in Sheffield, so I jumped at the chance.

irene75359 profile image
irene75359

Ang, I can't offer any advice whatsoever, everything you are going through is way outside my experience. But in spite of all you are going through, you have retained your sense of humour and ability to make me laugh out loud - thank you for that!

Hoping you get all the information you need and that the route you choose gives you a peaceful heart.

Ducky2003 profile image
Ducky2003โ€ข in reply toirene75359

Thank you Irene.๐Ÿ™‚

Poochmom profile image
Poochmom

Good day to you Ducky! Iโ€™m so sorry you are going through this mess. I sure understand you though.

I have been doing some research regarding ablations as I am close to one. I am in the US tho, and there is a procedure here called Wolf Mini Maze done by a heart surgeon who invented it. He has been doing it for 18 years with fabulous success rate. It even gets a person off of blood thinners as he clamps the left atrial appendage where clots form. It is more invasive in that there are two incisions where instruments go to the heart through the ribs. It is less invasive because it does not go into the heart. Instead he ablates the nerves on the outside as that is what he believes causes the trouble, not the heart muscle itself. The reason I tell you this is he mentioned a hybrid procedure that others do. Even though you are in the UK you might want to look him up and watch the Dec 7 webinar he put on where he discusses ablation vs WWM. WWM is wolf mini maze. It will give you a lot of information to discuss with your โ€œniceโ€ surgeon. Website is wolf mini maze.com Randall Wolf.

Best of luck.

Marsha

Ducky2003 profile image
Ducky2003โ€ข in reply toPoochmom

Thank you MarshaI don't think that anyone performs the WMM outside the US. I have been surprised, considering its apparent success rate, that no one else is pursuing training in this procedure.

Yes, it was mentioned by the EP that the Hybrid goes in through the chest and ablates the outside, in one session, then an RF ablation follows about 3 months later.

Thanks again.

Poochmom profile image
Poochmom

Also, with the WWM patients have been AFib free as far as 17 years out because he tests the nerves to find out where the problem is, not a crap shoot that the ablation does to โ€œtryโ€ to fix it. Just a thought and as I said even though you are across the pond he will give you loads of information. The guy is a miracle worker and a genius in this area

Bennera513 profile image
Bennera513

Nothing to add,..just wanted to say I chuckled a few times at your word choice. If nothing else your 'missive' gives me perspective over my 12 week post ablation ectopic runs and high HR (albeit in Sinus Rhythm). Best of luck and do keep us informed of what you find out with the 'Nice' surgeon.

Ducky2003 profile image
Ducky2003โ€ข in reply toBennera513

Good luck with your post ablation recovery. The higher heart rate is normal but good that you are still in NSR. The surgeon was, indeed, very nice so I will post about it when I get my head around the info. ๐Ÿ˜Š.

Ablation7 profile image
Ablation7

Great that you can keep your sense of humor! Good luck with your appointments, results and decisions!

Ducky2003 profile image
Ducky2003โ€ข in reply toAblation7

Thank you.๐Ÿ˜Š.

bassets profile image
bassets

Best of luck Ducky.

Ducky2003 profile image
Ducky2003โ€ข in reply tobassets

Thank you.๐Ÿ˜Š.

Shcldavies profile image
Shcldavies

Great post, so unfortunate that your still suffering from this terrible condition, hope you get it fixed soon. Regarding the key questions to ask, I think you have covered most and remember the stats of any surgeon can be misleading as you will not know of any underlying problems that their patients may have had. In general I would go with what the Docs advise, they are not always right but they do know your particular condition better than anyone else. In my experience the Docs will appear more pessimistic (self preservation) and remember they do an awful lot more tests nowadays to check everything is as safe as it can be. All the best in your quest, looking forward to your next post which hopefully will be after a successful "nap and zap" or consultation with your nice surgeon.

MummyLuv profile image
MummyLuv

Hey Ducky2003 , just reading your post and wondered what happened after you saw the โ€˜nice manโ€™, was he nice enough for you to progress ๐Ÿ˜‚

Iโ€™m having the surgical ablation procedure next week and after 3 months if not in NSR a catheter ablation will be performed. I am hoping the surgery will be enough ๐Ÿคž๐Ÿคž

Ducky2003 profile image
Ducky2003โ€ข in reply toMummyLuv

Hi. I will post an update but had so much going on. Yes, I did see the nice man and indeed he was. Unfortunately, the Echo I had the month prior showed mitral valve issues so the hybrid ablation has been shelved. He did say that you had to have both parts of the procedure as I did ask if you were ok after the surgery part, you didnt need the catheter part but he said no, you had both parts as it was unlikely only the surgery would keep you in NSR for a great length of time.Hope that all goes well for you.

MummyLuv profile image
MummyLuvโ€ข in reply toDucky2003

Awe Ducky, sounds like you sure have had a lot going on! Hope the mitral valve can be fixed and you can have the hybrid in due course.

Interesting how different cardiologists/surgeons approach things, I am having the surgical procedure and only if required will there be touch up catheter ablation.

Ducky2003 profile image
Ducky2003โ€ข in reply toMummyLuv

I think the idea is to cover all bases rather than potentially do half a job. If there is a problem with valves, they tend to steer away from the Hybrid as the scarring they create on the outside of the heart makes it incredibly difficult to perform any surgery required on the inside. I'm guessing they will give you an echo to check your valves beforehand. If I have to have a valve repair, there is a possibility of a maze procedure at the same time which supposedly has a high success rate, so would negate the need for the hybrid but we'll see what the nice chap says in a week or so ๐Ÿ˜. Best wishes. Ang.

MummyLuv profile image
MummyLuv

Best of luck Ducky!

Gosh didnโ€™t know that about scarring, will need to ask consultant as donโ€™t fancy needing work in the future that they wonโ€™t be able to do.

Ducky2003 profile image
Ducky2003โ€ข in reply toMummyLuv

Thank you. He was very thorough in his explanation and gave me some literature. From what he told me, he would pretty much "burn" areas in bars across a fair bit of the outside of the heart. That causes tissues to stick together which is what causes the tricky bit with further surgery........ not impossible but trickier.As you're about to have yours, I'm sure that they have looked into all the aspects for you and would not go ahead if they thought there was an issue. Hope to see your update and that all goes well.

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