Saw an EP after waiting so long….

[Slidingdoors99]

I hope that someone can help?

Finally I saw an EP yesterday at Bristol Heart Institute. (The AFib nightmare began in September 2020)

I have persistent AFib and very symptomatic. So far three electric cardioversions and one chemical.

The ECG yesterday showed a problem with T waves (they’re going up, like a hill and it should be the opposite he said)

I was hoping for the ok to have an ablation but he suspects cardiomyopathy (family history not encouraging) and said that he doesn’t want to do an ablation if I do have this condition because the success rate is only 20% rather that 60%)

He mentioned twice that he usually treats people with paroxysmal AFib and seemed to be saying that with these people the success rate was much better?

Since then I have read that AFib can cause cardiomyopathy so if I am in permanent AFib then surely this problem will just get worse more quickly?

Next, it’s a MRI of my heart…

I have had countless ECGs and these T waves haven’t been mentioned before. Maybe missed? I think that’s unlikely, or a new and very unwelcome development?

Has anyone had a similar problem?

Thank you in advance to anybody who replies.

PS Last week I learned that the arthritis in my spine is now severe so was hoping for better news from Bristol yesterday.

[mjames1]

How are you defining "persistent afib"?

I have been in afib for as long as 7-8 days, so technically I might be persistent, however my ep said it should not effect an ablation outcome because of the short time frame and that I always convert back naturally. And that not to be too concerned until I stayed in afib much longer and could not convert naturally.

Another ep said I should be concerned and get an ablation soon. The opinions, while different, are not surprising since afib is a progressive condition and hard to predict how fast it will progress. But yes, at some point, persistent afib, sometimes referred to as long-standing persistent will have lower outcomes than paroxysmal.

I know you don't have heart failure yet, but two interesting articles on heart failure and catheter ablation. They seem to differ from what your ep says, but then again, you are his patient and he knows your history. If he won't ablate and you are not comfortable with that decision, best to seek another opinion.

Jim

acc.org/about-acc/press-rel...

ncbi.nlm.nih.gov/pmc/articl...

[Slidingdoors99 in reply to mjames1]

Thank you for your reply. Unfortunately I never self convert. I stay in AFib until I’m cardioverted.The longest time I had to put up with AFib was six months (no let up) until the amiodarone kicked in.

How would I get a second opinion, I’m wondering?

Privately?

Thank you again.

[mjames1 in reply to Slidingdoors99]

I'm not in the UK so have a different medical system, but I read here that some go private for 2nd opinions and/or to speed things up. Not really qualified to analyze, but six months in afib without naturally converting could mean a lowered chance of ablation success. Someone here, "MummyLuv" recently had a more aggressive Hybrid procedure that may work better for persistent.

Jim

[Slidingdoors99 in reply to mjames1]

PS I will look at what Mummylove had to say.

[Slidingdoors99 in reply to mjames1]

Thank you again! 😊

[BobD Volunteer]

All sounds a bit confusing to be honest. Inverted T waves are usually ectopics and they should go up above the line not under it. Not sure you got all the info correct?

[Slidingdoors99 in reply to BobD]

Hi Bob and thank you. I really think that’s exactly what he said! I will ask my local cardiology team to explain again!

[JOY2THEWORLD49 in reply to Slidingdoors99]

HiAlway get a copy of your ECG.

cheers JOY

[Slidingdoors99 in reply to JOY2THEWORLD49]

Thank you! I’ve never asked for that, but such a good idea! 🤗

[Jay10]

Hello, sorry that you are having rhythm issues at the moment. Could I ask which EP you saw at Bristol Heart Institute as I am also having bouts of AF and am waiting for a monitor ( referred in Feb,) to Southmead) but my case wont be reviewed until June. I would like to be sorted out asap.I hope you get back to Sinus soon.

All the best x

[Slidingdoors99 in reply to Jay10]

Hi Jay, thank you for your reply to my message.I saw a Dr Duncan on Friday.

He was really nice, but is just concerned that he may not be able to help me because I never ‘self convert’ and I may have some structural problems with my poor heart.

I hope all goes well for you. 😊

[Jay10 in reply to Slidingdoors99]

Thank you, I may try to get an appt to see him

[Slidingdoors99 in reply to Jay10]

I wish you all the best! My goodness, so many people just don’t understand how awful this condition is, do they?

I just pray that my children don’t have to go down the same path… xx

[Ppiman]

Life's pathway can certainly be a weary and sometimes lonely feeling one, that's for sure. I do hope things work out well for you. I suspect they will.

From what I understand, cardiomyopathy is a general term and quite large numbers of people have it. It doesn't seem to be known if it results in AF or is a result of AF. The MRI will be useful as, I gather, it is able to differentiate between healthy and other cells in the body in uniquely useful ways, so it can be used diagnose the state of the heart much more precisely than, say, an echo-cardiogram or ECG.

Steve

[Slidingdoors99 in reply to Ppiman]

Dear Steve, that was so helpful and has made me feel a lot better this evening!

My mum died of cardiomyopathy at just 48 and my sister died at 60 with AFib and other health problems too…

I’m not so concerned about myself really, but if it’s a genetic issue ( which the EP said that was a probability) I worried for my children and grandchildren too…

Thank you so much for your message.

I went into AFib, completely out of the blue in September 2020 and this forum has been a God send to me!

[Ppiman in reply to Slidingdoors99]

You sound the kindest of people. That’s such an important quality!

Steve

[Slidingdoors99 in reply to Ppiman]

Thank you. 😊

[Palpman]

I think we are both under the same Dr 007 in Bristol Heart Institute.

I have always had a negative T wave but on the day of my ablation it was flat and stated that it was an "anomalous Patern and also that it showed Coronary Artery Disease and Bradycardia at 46 bpm.

The procedure went ahead and was successful.

I understand your T wave is positive but peaked and I have no idea about that other than possible electrolyte problems. Perhaps too much potassium.

[SuziElley in reply to Palpman]

I saw Dr 007 in April last year. He decided against an ablation, on the day I was being admitted for one, due to «too many ectopics from too many points » He also rediagnosed me with atrial tachycardia instead of atrial fibrillation. He put me on Flecainide instead, which together with Diltiazem seems to have got me more or less controlled. I was due for a follow up last month but have been told they’re running well behind, so no idea when I will be seen now.

[Slidingdoors99 in reply to SuziElley]

Thank you so much for that. It was so very helpful Suzi. Thank you!

[Slidingdoors99 in reply to SuziElley]

PS I did ask him about Flecainide, but he just said that wouldn’t help me!

[SuziElley in reply to Slidingdoors99]

I did have to hide a big grin when introduced to him. I mentally added the 007! He was very thorough going through all my tests with me though. Now still waiting for the follow up 🙄

[Slidingdoors99 in reply to SuziElley]

Fingers crossed for you Suzi! I’m glad the appointment went well!

[Slidingdoors99 in reply to SuziElley]

Sorry! Just done some rereading!Do you mean that you haven’t had a follow up appointment since April 2021? 🤨

Am I being a bit thick, but where does the 007 come from?! 🤨😊

[SuziElley in reply to Slidingdoors99]

Lol…. 007 comes from his real surname. A few of us here have seen him in Bristol. Apologies for getting you confused with Palpman. No, I haven’t been seen since April 2021……

[Slidingdoors99 in reply to SuziElley]

Oh dear. That’s a very long wait…I’m still puzzled though! My EP is called Dr Duncan!! So unless that isn’t his real name?!!! 🤨🤨

[Slidingdoors99 in reply to Palpman]

Wow! Oh my goodness! Thank you so very much! On doing a lot of reading into AFib I have been taking a potassium supplement for two years.. (magnesium too)

I may be your biggest fan, if that’s the problem!

Thank you! 😊

[Palpman in reply to Slidingdoors99]

Too little potassium (hypokalemia) causes a flatish T wave like mine.

[Slidingdoors99 in reply to Palpman]

I see. Thank you.

[Bronte23]

You could arrange to see the consultant Dr Boon Lim privately in London. I have recommended him before to others. Google him and you will find his website. He provided excellent advice, also documented in a letter he wrote for me which set out a treatment plan. If you do see him, make sure you provide him with full information ( results of medical investigations and tests you have undergone ).

[Slidingdoors99 in reply to Bronte23]

Many thanks Brontë. I will look into it!

[JOY2THEWORLD49]

Hi S.

Its too long to remember the typing of it!

I now believe that INFLAMMATION has a lot to do with AF.

Why I say that I am a victim of this JOHNSON AND JOHNSON mesh. Another horror story.

Since I have had the TVT kit removed all the inflammation gone my Dr can't feel the AF. That was 2 weeks ago.

Friday again Dr said only 1 beat different and she thought it was an ectopic beat.

Hooray.

Is the AF leaving me alone?

AND of course with ENERGY restoring itself.

Exercise because I can now for longer!!!!

cheers JOY

[Slidingdoors99 in reply to JOY2THEWORLD49]

Hi Joy. So sorry to hear about your issues. I have read a lot about the mess thing… oh my goodness me…It’s interesting, what you say, because I have awful arthritis which has meant that there’s loads of inflammation in my body.,,

Wishing all the best, for the both of us! 😊

[Slidingdoors99 in reply to Slidingdoors99]

Sorry. I was tired last night Joy (not sleeping much at the moment)I meant mesh not mess!

I’m glad that your energy levels are coming back now. That’s great!

[Slidingdoors99 in reply to JOY2THEWORLD49]

Are you on the mend now Joy? It sounds like you are and I really hope so!

[DawnTX]

I am so sorry it is that difficult to see a doctor and get treatment. It doesn’t seem right that you’re being told sorry not much we can do. Some people can go through life just with meds. My PE took a more aggressive approach and I had an ablation almost immediately following discovery that it was a fib that made me blackout. The one thing that I know may be different for me than others is that I have no other heart issues no blockages or valve etc. my paternal side had serious heart issues so I know it’s out there and there’s probably more I will never know . Every day there is some thing no have you read mummy love here? She had the maze done and I just had the vein of Marshall done in the past month. She is doing incredible of course I have 20 years on her. I’m not sure if that’s playing a role but also I know that what I had has a longer recovery time to see results it’s for the long-haul hopefully. I don’t know what to tell you if you were here in the states I would say find another doctor. If you have that opportunity then I would get a second opinion. Best of luck going forward

[Slidingdoors99 in reply to DawnTX]

Hi Dawn. Thank you so much for your message. It has made me feel so much more positive and less stressed this evening, so again, many thanks.. 😊

[Slidingdoors99 in reply to DawnTX]

PS I have a strong feeling that the AFib caused my structural changes in my heart, but I suppose I’ll have to wait and see what the experts say!