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So worried

honey1958 profile image
20 Replies

Hello all

As you may know I had an ablation 3 months ago for uncontrolled fast AF which had caused severe HF and valve leakage. Prior to ablation could hardly do anything apart from rest.

Since ablation thought I was doing well. Much more energy able to do daily walking, nausea gone appetite back . Have had periods of feeling nearly normal. Had awful headaches for first few weeks after ablation but now alot better.

Have had brief AF episodes since ablation and ectopics but none for last 2 weeks.

Echo and EP appointments this week was really hoping for good news re heart function and valves.

Now been back in fast AF for 2 hours. No reason I can think of. Is there no end to the AF rollercoaster? Had even started to consider a few days away.

Feel hopeless and back to square one. Sorry for ranting. How has anyone else coped feeling this way?

Thanks

A

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honey1958 profile image
honey1958
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20 Replies

We all know how difficult it can be but unfortunately an ablation rarely provides an immediate solution or remedy to AF symptoms and this is because it takes time for scar tissue to heal sufficiently to stop the rogue impulses which cause AF. I’m sure you will have seen the factsheet (link below) which says that in reality, the blanking period can be up to 6 months, sometimes longer. This is why EP’s rarely arrange reviews until 6 months have elapsed. Try an be a patient patient 😉 because added anxiety only makes the situation more difficult which I know is easy for me to say!

heartrhythmalliance.org/res...

honey1958 profile image
honey1958 in reply to

Thanks FlapjackI know in my head I should understand and be a patient patient.

I just find it so hard to do! I have even had counselling as I can't cope with accepting being ill and needing to be cared for as I was always the carer and strong one.

Really thought after 2 weeks AF free I had turned the corner. Sadly not x

in reply tohoney1958

I’ve had 2 ablations, the second was in September 2018. Everything went well with a few minor blips but 7 months later I had several episodes within a 2 month period. Things started to settle again and this year so far, I have had only one mild episode which was quickly stopped using Flecainide as a PiP. All this really means little because we are all different but an ablation is a procedure, not an an operation which is another reason why success is rarely instant or total. Now off to bed and get some shut eye…..😉

honey1958 profile image
honey1958

Thankyou for your support Flapjack sleep well

TracyAdmin profile image
TracyAdminPartner

Good Morning, how are you feeling today? If you would like any help or support, please do not hesitate to contact our Patient Services Team at info@afa.org.uk, you may also find it helpful to join our "on demand" HRC2021 Patients Day, if you register today, you will have access to the entire event over the next 12 months too heartrhythmalliance.org/afa...

honey1958 profile image
honey1958 in reply toTracyAdmin

Thankyou Tracey

Still in AF today unfortunately and very disappointed.

Will certainly register for the Patients day and may contact patients services. Although they may get fed up with all my questions!

TracyAdmin profile image
TracyAdminPartner in reply tohoney1958

You are very welcome to contact us anytime ! I am also sure the Patients Day would be a huge benefit to you too ! Take care, Tracy

Ducky2003 profile image
Ducky2003

I'm in a similar spot. 5.5 months post ablation. Have chased my echo and MUGA scan appointments on Friday and waiting to hear back. Hope things settle for you.

honey1958 profile image
honey1958

Thanks Ducky2003 for your reply and sending my sympathy.

Hope you get on OK Friday. I see my EP Friday too. Can I ask what is a MUGA scan?

Let us know how you get on.

Honey, if it doesn’t revert soon, I suggest you contact your cardiac nurse. They may suggest a CV or PiP but it’s worth making them aware…..good luck

honey1958 profile image
honey1958 in reply to

Thanks FlapJack Back in rhythm sinus rhythm! Has reverted on its own like previous occasions.

I just get so anxious when it starts up again as its damaged my heart.

Had allowed myself to believe that it was sorted after two AF free weeks.

Will see what EP says Friday

Thankyou for your support

Excellent news!

Lucymoo profile image
Lucymoo

I had my ablation mid May 2021 and find I have some episodes of AF but numerous episodes of ectopic. Still on beta blockers 2.5 mgs and apixaban. WS given flecainide as a pill to take as and when but only used it twice. I’ve decided to take the attitude to carry on with life and ifthe AF kicks in (highest so far has been 180 ) I slow down TIL it settles and then carry on. Have had a number of short breaks away without problems even when AF incidents have kicked in. I’ve decided it cannt controll my life I just try to manage it when it happens and it’s working for me. You have to make a plan that works for you and keep going it’s not going to go away. I’ve had mine over 15 years but it’s only been an issue in the last couple of years

Jenmay profile image
Jenmay

Main thing is that you are on blood thinners

honey1958 profile image
honey1958 in reply toJenmay

Thanks Jeremy have been on edoxaban since first diagnosed.

honey1958 profile image
honey1958

Thanks for your reply Lucymoo..

I agree with you that the right attitude is to just get on with it. I need to learn to put it into practice! .But sometimes feel so awful after an AF bout get scared to do anything.

Still on all my meds bisoprolol digoxin furosemide and edoxoban. Were reduced after ablation but put up again when I went back into AF 5 days later. Will see what EP says Friday

Good for you for not letting it beat you!

barge5 profile image
barge5

Hi honey. I had an ablation six weeks ago. I feel terrible too. I'm breathless, bad heartburn and still having palpitations. When I breathe it's like sunburn in my chest!!

honey1958 profile image
honey1958 in reply tobarge5

Hi Barge5

Sorry to hear you're feeling rubbish.

For the heartburn were you given tablets at the hospital? I was given omeprazole as apparently the procedure can irritate the oesophagus.

Would be worth checking with the pharmacist as you may be able to get something from there.

barge5 profile image
barge5 in reply tohoney1958

Hi honey. I did reply just but I don't think it went through.Anyway yes I was given only one month's worth of lansoprazole and wasn't advised to take anymore. I also still have soreness in the oesophagus. Can't explain it. Like burning... and a stupid cough. I thought I had covid but test was negative.

Since your reply I've rang my GP to get more. Thank you

Mandy

👍

honey1958 profile image
honey1958

Hope you feel better soon.

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