At last, after 6 months waiting, I've been given the date of 26th June to have my second heart ablation.
I have Atrial Fibrillation with Tachycardia (6 years) and Atrial Flutter (new 6 months ago) and was in hospital for a week just before Christmas when my heart refused to stop racing.
After a failed cardioversion I ended up being put on the dreaded Amiodarone. Which I really don't like taking! Even more so the last few months as it appears to be damaging my thyroid.
The last ablation made me feel so much better, so I'm hoping for that same result this time.
Jean
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So happy to hear you got a date. I know the fear of being on amiodarone and the damage it can cause. I hope to hear that you had it done and are AF and flutter free.
I did reply to your good wishes but my response appears to have disappeared. So if you get two responses you'll know why. Thank you for your support, it is very much appreciated.
I'm taking Amiodarone just now, in preparation for cardioversion. 2 a day for 10 days. I did look on the internet and also read the leaflet provided (in Italian so may have missed something). I wasn't too pleased about it but must admit didn't think of it as being so terrible, would like to know more about it and why it's "dreaded". Can't be worse than rat poison! (joking)
Amiodarone just has a list of side effects that are really nasty. Most drugs also have a long list but with amiodarone we see a much higher percentage of people who experience those side effects. Most EPs will only use it for a short term because of those. Drugs com has a warning attached to the description of it.
"Amiodarone is for use only in life-threatening situations. This medication has the potential to cause side effects that could be fatal, and you will receive your first few doses in a hospital setting."
My daughter is nurse that specializes in dialysis and when I told her about the drugs that can be used for AF she yelled at me when I mentioned it. They do kidney and liver tests often with those using it. Here is another statement about renal problems caused by amiodarone.
"In a series of 30 consecutive patients started on amiodarone and followed for 12 months, 28 (93%) developed a mean increase in the serum creatinine of 11%. Two patients were excluded from analysis."
It is just a drug that most want to stay away from.
hi strand I have been on amiodarone now for the last two yars (100 mg daily) so far I have had no poblems I did read the leaflet that came and I did think it was scary. but my consultant assured me that is okay as it slows the heart down. have to see him again in 6 months and I will ask him if I am to stay on it long term
Hi Paolina - I don't think it's harmful if taken for a short period. I was told before Christmas, at my local hospital, that I would only be taking Amiodarone for a few months. Well I've been taking it for 6 months now while awaiting my ablation. It is worse than 'rat poison'. I'm being monitored as it appears to have damaged my thyroid function, thats one of the problems with it, it can damage internal organs. I was told it's not usually given to younger people - me I'm a young 62!
If you are in Derriford I guess your EP is David Tomlinson? I hear great things about him and met him once. Seems a good man.
If you are in West Country would you be interested in our occasional lunches? We meet near Exeter (as the most central point south of M4) at The Diggers Rest, Woodbury Salterton and generally have up to ten AFers Only social but good fun. Next one likely to be mid to late July whenever I organise it..
In Derriford my consultant is Guy Haywood. I will give some thought to attending your lunches, will have to look on a map and see how far Woodbury Salterton is from Brixham.
Jean
Hi Jean
Great to hear you have a date. Your story seems very similar to mine and I'm only in Paignton. Would you like to meet for a chat sometime?
I had two ablations at Derriford with Dr Tomlinson who was excellent and I know he trained Dr Haywood so he should be just as good.
I too dread amiodarone - who wouldn't? It's known as a "dirty drug" in the trade but it really does work and is OK in the short term. I woldn't want it long term.
Thank you Nikki, yes it certainly would be great to be AF free. Then I can resume my walking, cycling etc with full force. It's strange you know, when walking up hills in the past my heart used to hammer in my chest - really bang, I thought everyone's heart did that but now I know different. My first ablation two years ago cured that.
When my AF first began about 6 years ago I was convinced that I could cure it myself by healthy eating and losing a little weight, but that was not entirely so!
TIP FOR EVERYONE - What I did discover though, was that by excluding all forms of artificial sweeteners from my diet made me feel so much better and my permanent abnormal heart rhythm returned to normal. I thought I was being health conscious having sugar free bio yogurts, sweeteners in my tea, diet lemonade, chewing sugar free gum after meals and so many other things contain it. My poor body was overloaded with these sweeteners! For a while I did think I was totally cured. On the whole my heart rhythm is quite normal, it's just the blips when it races for days. Unfortunately that appears to be happening much more since Christmas.
Hi jean - I'm under Guy Haywood at Derriford - he is one of the top EP's amd has been carrying out ablations for over 10 years. He's got a great website - you may want to take a look. I'm in the early stages of the waiting time so some way to go I think. Good luck. Xx. BobD - I'm keen to link up with other AF pals as I live in the West Country too - are the occasional lunches an open invitation?
Yes, I think Guy Haywood is brilliant too. He did my first ablation 2 years ago and improved my life so much. Before then I was so extremely tired that if I went out for a walk I would come home and have to sleep, also anything requiring effort wore me out. Today I'm pretty well, just getting heart racing episodes every few weeks which last for days. I don't know about you, but when I think back now I realize I'd had the heart problems for a long time and been unaware of why I felt so odd. I couldn't keep up with other cyclists that I went out with, nor when I started cross country - always struggling to keep up, with my heart banging away.
well Jeanne , it's bit of a long story . My husband was diagnosed with terminal cancer the same week as I was finally diagnosed with AF.I will leave it to your imagination which medical condition took centre stage, I'd seen a Professor at Manchester hospital who said I was an ideal candidate but because of the stress factor he wouldn't do it. he gave me an assurance that when my life was "better " he would do the ablation.
Now I live in North Wales and the contract between Manchester and Bangor hospital was changed - cheaper bid from Liverpool - so I had to change to Liverpool. After my husband died ...5 years later... I asked to be referred for ablation. during the 2 years after his death my stress levels soared owing to the bank losing his will.
To cut a tedious story short when I saw the consultant( in Liverpool ) the first time, I was told there was no evidence of my heart ever being in atrial rhythm & was told to go home. This led to my local consultant at Bangor taking charge! Eventually I saw him again but he wanted to do pace & ablate....leaving me with no chance of an ablation later on. I declined the offer .
If I had the money I would go somewhere else but as things stand I'll wait & pray.
Hi Nikki - Sorry to hear what you have been through over the last few years, life can be really hard at times. How often do you experience your heart problems?
It varies; at the moment its ok but can be pain in butt . My heart can suddenly have a race with itself.... leaving me feeling so darn tired; unfortunately being on bisoprolol
makes it worse but it does help heart slow down too.....bit of a catch 22 situation. Tried Dliteum but that caused me lots of problems...so it was back to old faithful.
The stress factor is one I really try to watch out for , there is no doubt in my mind that it causes heart to go AWOL more often . Life can throw you a curve that you can't change but I now know that I'm gaining more control now..... AF is still the boss but it has a challenger now !
Hi Jean do you know your health journey sounds just like mine! I'm sure I've been flipping in and out of AF for a number of years as my hear t's been bumping around for a long time. I am so pleased that you have got a date and will be really keen to hear how you get on. I live in Saltash and work in Plymouth so you never know we may bump into each other. All the best Heather x
Hi Heather - I've heard from a few people who live not too far away from me. I don't know if there's a local AF group that meet up in our area - will see what I can find out. I was invited to join the Exeter area group at one of their meetings which I may well do, but it's held outside of Exeter I think it was at Woodbury Salterton.
I gave up work at Christmas after being in hospital with my heart racing for 7 days. I just decided I didn't want the stress of it anymore. I wanted to live and cut out any triggers!!!
I know exactly what you mean about cutting the stresses and triggers in your life - I feel a bit the same and have just gone back to work after 4 months sick leave. It's made me look at my life differently and makes me appreciate that a work driven life doesn't fulfil me but will only damage me. i now have to change my mindset, start enjoying life more and be kinder to myself! Thank goodness I found this site otherwise I don't know where I'd be xx
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