Update ablation

[Lilypocket]

Hi

The yo-yo continues!

Just over 3 weeks after my RF ablation I am having more and more crazy rhythms - Flutter has now joined the party. I managed to get a rdv with new cardiologist and as luck would have it she knew my EP ( he was her interne at the military hospital near my home that takes civils)and rates him highly.

She confirms I have Afib and Flutter and after an echocardiogram that I have some liquid round the heart . I have been put on Amiodarone ( not happy as I have thyroid nodules and don't want to upset them) and Furosemide for 4 days. She said my heart " was tired" so thank goodness I saw her( she's on holiday tomorrow for a month) and didn't wait for the 3 month checkup! Also so happy that she works with my EP so I now have a good team. So I'll be having a second ablation looks like but I half expected that when I started to have loads of different arythmia during the blanking period that seemed more than should have been usual!

I have also dropped 10 pounds in 3 weeks

Anyone taking Amiodarone 200mg? Any tips?

So behind every thunder cloud is a glimmer of a ray of sunshine ( my new cardiologist).

Take care and I hope my other ablation buddies are doing OK 🤞🤞

xx

[jeanjeannie50]

Hi Lily, you have my sympathy it must be awful having AF and flutter so frequently. Sorry to hear you have fluid around your heart and hope that the medication prescribed soon clears that up. Has she referred you back to your EP or is he on holiday now too? Who do you see if you need advice now?

Jean

[Lilypocket in reply to jeanjeannie50]

Hi Jean

Everyone is away for the whole of August. All the Dr said is if I get very breathless to go to ER as it might be that the liquid has increased. But forewarned is forearmed. I'm glad I didn't wait for my 3 month check up!

Anyway since I took my first Amiodarone at lunch time my heart has pretty much settled down. What a wonder drug! A bit of respite is welcome after 6 days of Flutter and Arrythmia I have to say. However the Dr wants me to take 200mg × 2 a day for 7 days. That seems like a lot. Then to drop to 1 a day for a month. Then 1 a day for 5 days a week for 3 months. Then I suppose an ablation. Not exactly what I had planned but I'm just in the % that the ablation doesn't work for - indeed it made things worse 🙂 .

Was it you or Bob who said one of their ablations made things worse before the next ablation sorted it?

x

[jeanjeannie50 in reply to Lilypocket]

My first two ablations made things worse.

The third one helped a lot, although I had to stay in hospital an extra day as my heart took off big style the day after the ablation. then I had to go back for a cardioversion about 4-6 weeks later. Had several cardioversions in the years afterwards. Then just over two years ago I was told I wouldn't be offered any more. so now in permanent low rate AF. Heart rate a bit up and down since (on the advice of a cardiologist) stopping my Flecainide a few weeks ago. Still taking Metoprolol, but may need to up my dose of that.

Jean

[Auriculaire in reply to Lilypocket]

Mince! You must be pretty pissed off though it looks like the new cardiologist is helping. I have been following your reports with baited breath as I have been thinking about an ablation . I really hope it all settles down soon. At least you are only on the higher dose of Amiodarone for a short while. Rest up next week - another canicule is looming .

[Lilypocket in reply to Auriculaire]

HiI think I'm the exception to the rule. I only had Lone Afib so I had a good 80% chance of it working according to EP. But the ablation has opened a bit of a Pandora's Box for me. Big mistake not to have been given meds after in my humble opinion. I think that set off AFib and Flutter joined in last week. But I will wait for next appointement with Cardiologist on the 14 september to see how things are. And when I finish the 4 months of Amiodarone will be able to see if all has calmed down ( the scarring worked or not worked) and have another ablation or hopefully not.

I still think an ablation is worth trying as my Afib went from once a month to every 2 days fairly fast and I think persistant was just around the corner.

And I still self convert which is positive.

Lets have a rain check after my cardio rdv.

[DawnTX in reply to Lilypocket]

So glad that the meds are working for you. I could not take that one but it’s exactly what the Multaq did for me. I had both persistent and flutter and on the table during my second ablation I hit 300 beats a minute. Obviously they fixed me lol but no one bothered to tell me until I asked about the rash on my chest in the shape of a rectangle. Yes they had to zap me. The way I look at it I’m here to tell you so that’s a good thing. i’m trying to believe that as each day passes they find new answers for all of us. It sounds like you are on a great path

[dedeottie]

Hi Lilypocket. I am in the same position as you. After 2 weeks of mostly NSR I went back into my normal AF/tachycardia/flutter 24/7. Had an ecg last week and now waiting for my EP to say what he wants to do. I know I need another ablation and also fear another 6 month wait but am concerned that being at 130 bpm for ages will put strain on my heart. So far I have resisted amiodorone and my EP doesn’t seem keen to try dronedarone for some reason. I have been through the other anti arrhythmics. So, watch this space. I will post when I have further info.

Keep posting re amiodarone as It could be the best option for us both short term.

Good luck and best wishes

Jane x

[Lilypocket in reply to dedeottie]

Hi JaneI was wondering how things were going for you. I think my problems are because the EP took me off all meds after ablation and it was all downhill from there. I think the unchecked Afib post ablation finally provoked AFL which I never had before. I had rates of 145/50 on and off all last week. The cardioligist was adamant I go on Amiodarone for 4 months. I have complied because I can't carry on being out of rhythm for 20 hrs a day - the heart needs help.

I'll let you know how I get on with it.

X

[Lilypocket in reply to dedeottie]

Just reading your post again. All that arrythmia 24/7 seems tough. When I had my echocardiogram yesterday she said my heart was getting tired . Probably meaning my poor left atrium has altered in size temporarily with the fast HR.. Sitting here I feel like a new person back in a steady 60 bpm ( for now) as the Amiodarone starts working. I didn't want to take it either but she said my heart needs to rest. I shall be the scout Jane and report back in 7 days to say how things are going. 😉 xx

[dedeottie in reply to Lilypocket]

Thank you. I would really appreciate that. X

[wilsond]

Sorry to hear flutter has joined in,that was the worst arrthymia for me.It sounds as if there is a good plan of action in place for you,be well soon xxc

[Lilypocket in reply to wilsond]

Thanks! I must admit I hadn't expected things to be so bad after an ablation for PAF.A right Pandora's box! So no holiday with the family this year am just sitting tight at home ( not tight drunk you understand lol) as I'm a bit breathless. I hope the drugs start working. I get the impression things have slightly improved but then it gets bad again. A bit of a struggle between the Amiidarone and the Afib me thinks!

One positive outcome is the 10 lbs I've shed in 3 weeks.

How are you? Still in NSR? I'm so happy for you ☺

Take care xx

[Gowers in reply to Lilypocket]

My cardiologist said if I have to take Amidarone it has to start with a high dose, gradually reducing over time as you mentioned. I had 4th ablation 3months ago as I was determined to try & get better. Like Jeannie I have also had few cardioversions which only worked a short time. Cardiologist said weight loss was due to the high heart rate, like running a marathon for a few days - & that's just how it felt!

[Lilypocket in reply to Gowers]

HiYes I am taking a loading dose for 7 days then halving it for a couple of months. I believe taking it for a short time doesn't cause all the terrible side effects. 🤞

Four ablations wow! How are things going for you?

I think my weight loss is mainly due to being bloated and having no appetite after the ablation as well as the speedy heart rate.

[Gowers in reply to Lilypocket]

I read somewhere that The speedy heart rate seem to change the metaboluc rate. I've gone through 4 ablations because the 1st three failed so following 3 have been to re-isolate different areas. I went into af the following morning after 1st one & was quite poorly so had 3 night stay in hospital. The 3rd touchup ended being three and half hours long so last one has so far got rid of af & flutter. Not easy getting used to a HR of 60-72 after months of HR over a hundred!! Each one a different experience & recovery time. Found this site very helpful

[Lilypocket in reply to Gowers]

Are you saying that you have been in NSR since the 4th ablation? Are you still on medication? Sounds as if this one has worked for you 🤞I think I'll need at least 1 or 2 more - I don't think I'm an easy nut to crack. I go into Afib just standing up or leaning forward sometimes.

[wilsond in reply to Lilypocket]

I hope things settle down for you soon. Bonus with the weight loss yes,see happened to me with extended flutter episodes. I lost weight but it found me again haha!

Fingers crossed for a calm heart.

Yes I'm still in NSR,still taking all meds until told not to,so we will see what happens then. I feel it's not a true picture really,being on the drugs still but happy anyway

I'm going to ask if I can reduce the Bisoprolol as heart rate is just around 50 , drops bit below sometimes. Makes me feel sluggish etc .

Keep your chin up xx xx

[Lilypocket in reply to wilsond]

HiThanks for your message. I'm in NSR so it feels nice to give my heart a rest after the basket of fireworks last week. What a shame Amiodarone is so bad for the organs in the long term. It really is a wonder drug. However I think as I said that letting the heart run wild with no drugs after the ablation has probably created new pathways for arrythmia. So I know this is temporary but it feels nice.

How much Bisoprolol do you take? 50 bpm is a bit limit and if you are feeling so sluggish it is probably dropping below 50?

Take care xxxx

[wilsond in reply to Lilypocket]

So glad amidarone is doing the trick for now and you are feeling better.Yes,I was told to continue with all meds ,to retrain the heart in correct rythym.

I take 2.5 Bisoprolol,it's not a high dose but it is for me.

Take care now xx

[Lilypocket in reply to wilsond]

I spoke too soon!After à good start with Amiodarone I had no sleep last night due to Bradycardie alternating with extrasystoles and fast spurts of tachy or flutter. I would like to take 1.25 Bisoprolol but these rhythms are perplexing. My next rdv with cardio is 16 September so I' ll just try and chill out. Been in afib pretty much since but not too fast.

Anyone who could give me their experience of starting Amiodarone and tell if it's normal for the beginning to be do bumpy please let me know.

I think I'll go to Bordeaux for the next ablation lol

Xxxx

[wilsond in reply to Lilypocket]

Oh so sorry.very frustrating for you. Yes Bordeaux would be great eh

[Lilypocket in reply to wilsond]

Well I already live in France and with all this Brexit business I took french nationality last year so am Franglais haha! Xx

[wilsond in reply to Lilypocket]

Great thinking on both counts! Good luck xx

[DawnTX]

I had the same issue with fluid even though externally it didn’t look it. I was given the same diuretic and within days felt the difference. My PN who works with my IEP told me pretty much the same thing. The fluid causes your heart to strain and work harder. I’m so glad you have your new doctor that’s wonderful. I didn’t know what the blanking period was which is why I asked here. It made perfect sense and I do have light at the end of the tunnel but not perfect yet. Because of what I had done for me it can take up to a year to heal. When you know that’s normal it’s not as scary. I am still popping back-and-forth into a fib strangely when I first get up from bed. I have been on a strong medication for pericarditis so it could even be a side effect of that. This is my last week finally on it so once it clears my system hoping to feel even better.

You’re going to have to be patient and it’s horrible to be LOL I would think it’s too soon to talk of another ablation. That congrats on the new doctor and one who can work with your EP. My cardiologist and EP is the same person and I love it.

[listerines]

Hi Lilypocket, if it is any consolation I have had 2 ablations over the past two years and both times afib has come back after coming off the meds (around 3 months post ablation) - the silver lining though has been that the meds I was on before the ablations that were not really working to keep me in rhythm are now doing a far better job keeping me in NSR for longer periods (now that I am back on them again). The ablations have definitely changed things for the better I just took a while to get there. Hopefully things stay relatively stable till my 3rd ablation in the fall.

Hopefully the combination of your recent ablation with the amiodarone dosing will stabilize things until your next procedures. Keep safe

[MummyLuv]

Goodness that sounds quite the arrhythmia party 🎉 one you didn’t want to be invited to! Pleased for you the amiodarone is working, I was on a similar dosing with my mini maze although I started 6 weeks before in order to help hold the rythm post maze.

You prob know Amiodarone works differently to most drugs, it is not in your blood stream, it clings to the protein in your body and is then released as the protein cells renew, hence the need for loading up front and also why it has such a long half life when you stop taking it. The nurse at my hospital described it as ‘domestos’ as it kills all known arrythmias’s dead 😂

Even though you, like me, are only on short term use, I suggest they should still be checking your bloods for thyroid, liver and kidney. Mine was checked at week 3 and week 8.

Hope your new team can keep you in NSR 😘 Alison

[Lilypocket in reply to MummyLuv]

Hi AlisonHow are you getting on? Everything still running smoothly I hope. 🙂

Did you carry on taking Amiodarone after the ablation ? How much were you taking each day?

Yes I'm seeing my cardio on the 16 September and I have a prescription for bloods to do before I see her.

I think I have a very twitchy heart- just moving can set Afib off sometimes! But not a glass of wine ( before ablation - of course I won't have one while taking "Domestos 😅).

Take good care xx

[MummyLuv in reply to Lilypocket]

Great to hear your bloods are being monitored 👍

I was on 200mg once a day for 8 weeks post surgery. So over 3 months in total.

All good here still,having the odd bout of PVCs but no afib 👍👍

[Lilypocket in reply to MummyLuv]

I'm on a loading dose of 200 x 2 for 7 days then 200 x 1 day for 2 months then 200 x 1 à day 5 days with the week-end off. Then stop and wait with baited breath to see if the ablation has lessened the Afib. To be honest Instead of 200 mg last night I took 100 mg ( 300 mg yesterday instead of 400) as I had had 2 very miserable nights previously with thumps and racing heart and then HR of about 35 bpm which frightened me . What a difference! Got a good nights sleep at last! Anyway tomorrow I change to 1 × day. Did you get any side effects? My stomach is sore ( has been since the ablation) but I wonder if it isn't the PPIs but also all the other stuff I take ( pick me up I'll rattle 😃 ) and lack of appetite so not eating much.

Long may your results last Alison normal HR is so precious and makes us feel so good when we have it!

Xx

[MummyLuv in reply to Lilypocket]

Totally. And we all know we may not have NSR for ever but to enjoy it when we do 💕

Amiodarone increased my liver toxicity and made me feel sick. The mix of post op drugs made it worse. I managed to stay on for what was needed but I found travel even in the car difficult, bus impossible.

It didn’t decrease my appetite but I have heard others say that was a side effect for them.

Long May you have peaceful nights 🤗

[Lilypocket]

Thanks Alison! x