Feeling disheartened: Almost 5 weeks... - Atrial Fibrillati...

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Feeling disheartened

Surreyhunni profile image
10 Replies

Almost 5 weeks since my cryoablation. I suffered phrenic nerve damage as a result, so breathing a problem. Any exertion leaves me gasping. I cannot sleep lying down. I have lost any independence I had, as I cannot walk more than a few feet without dizziness and breathlessness.

Before the procedure I used to get af episodes every 8 days, lasting 2 days. Since ablation I now get this and more episodes in between lasting between a few hours and half a day.

Am I wrong to presume the ablation hasn't worked?

Feeling very disheartened at the moment as I know I couldn't face another ablation, especially in light of the phrenic nerve injury. Am I likely to be left worse than before I had the procedure or am I judging too soon?

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Surreyhunni profile image
Surreyhunni
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10 Replies
BobD profile image
BobDVolunteer

It really is still very early days yet. Three to six months is about average for full recovery.

I do understand your worry but just take every day as it comes and I am sure you will et there in the end.

It took me over a year to get to my present state post cancer surgery six years ago and know how one can easily think it not worth it but trust me it will be.

Surreyhunni profile image
Surreyhunni in reply toBobD

Thanks Bob - I just don't feel I'm making any progress but as you say in the scheme of things its probably too early to say. I hope you are well x

Fastbeat profile image
Fastbeat

I know how you feel ,I have phrenic nerve damage, my ablation will be 8 weeks ago this Friday.Had a follow up x-ray about 10 days ago on phrenic nerve result no improvement, but early days so I am still hopeful it will heal I am avoiding all slopes ,inclines and stair where possible but know that is not the outcome we wanted,try to look forward and be patient it will get better with time.As for the AF I know it's difficult to judge how that's going when you have other problems to cope with, but I do feel better than I did at 5weeks post ablation where you are now,so try to look forward to better times.

Surreyhunni profile image
Surreyhunni in reply toFastbeat

Thanks Fastbeat - I was feeling pretty low yesterday and really fed up of not being able to breath properly.

I went to see a GP in the evening, she had never heard of phrenic nerve injury from ablation, so didn't fill me with confidence. She even asked me what she should put into google to look it up!

She diagnosed a chest infection and prescribed antibiotics and says she cannot hear any air going in or out of the lower half of my right lung. She has ordered an urgent x-ray that I am going to have this morning because she thinks it may have turned to pleurisy and is sitting at the bottom of the lung as I have also had a terrible pain in my side/back since coming back from the op. I mentioned this pain immediately after the procedure as I woke up with it and although at first they considered it might be internal bleeding, after examination from a Dr this was dismissed and no other suggestions. So I have lived with this awful pain for nearly 5 weeks.

I just want to be better and get on with life ..... hopefully getting the infection treated will help with the breathing. The increased AF episodes will settle too. Trying to be positive.

It's good to find someone with the same problem (not that I would wish it upon my worst enemy) but to know you are feeling better than at 5 weeks is reassuring. It is such a debilitating situation. Good luck for a speedy recovery.

Fastbeat profile image
Fastbeat in reply toSurreyhunni

Hope x-ray will give a definite diagnosis only then can you deal with it properly and move on with more confidence,will wait to read your next post when diagnosed.

Jane

Surreyhunni profile image
Surreyhunni in reply toFastbeat

Radiologist did x ray then asked me to wait while she phoned the district hospital, saying they may want me to go there. They had obviously seen something on the x ray. After 15 mins came back to me and said the District Hospital will be send my x ray result to my GP within the hour and someone will contact me. Usually its a 3 or 4 day wait. So I wait .... wondering and worrying :(

Fastbeat profile image
Fastbeat

Keep calm,you don't know anything yet, worrying will not help, not good for you or AF

Surreyhunni profile image
Surreyhunni

So ... long story short ... from my hospital bed... x ray confirmed phrenic nerve injury - pneumonia and clot on the lung! Feeling very sorry for myself.

Fastbeat profile image
Fastbeat in reply toSurreyhunni

Do hope you are beginning to feel a bit better, at least you now know what the pain was and they are treating it.None of this is good but you will get better and hopefully have better quality of life and nsr.Look after yourself and post your progress when you feel up to it.

Wishing you a speedy recovery.Jane

doodle68 profile image
doodle68

Hi Surryhunni what a horrible experience for you.

Try not to get too despondent, from what I have read of ablations it is early days yet. Some people seem to sail through ablation others are not so lucky, just keep telling yourself each day that passes is a day nearer feeling well.

Having 'phrenic nerve damage' sounds scary doesn't it but I was interested to learn the other day that crushing the phrenic nerve used to be a routine form of treatment for people with Tuberculosis . Knowing that made it sound less scary somehow.

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