Hello everyone I hope you are all keeping well and safe. I need your support please, I’m having a difficult day today. It’s now four months since my PVI ablation and two weeks since my CV for atrial flutter. I am still waiting to hear when I will see my EP to sign the consent form for another ablation, this time to hopefully sort out the newly arrived atrial flutter. Everyday now I am experiencing flutters, short lived but they make me feel very tired, and my blood pressure is dropping at the slightest exertion (90\68) now. I know we all are having to deal with very difficult situations and I am trying very hard to take each day as it comes, but today I couldn’t even hang out a small amount of washing without nearly fainting. My BP raises once I have sat down for about 10 mins, but this is really getting me down now, can’t go out for a walk at all now.
I now with the covid situation it will no doubt be quite sometime before I will get the second ablation so I have to deal with it but today I feel so very alone, and when I look out the window at the beautiful sunny, chilly day I just wonder how long it will be before I can get out to what I love, my walking!
Thank you for reading my post, I am sorry to be so down but just really needed to say out loud how I am feeling today - I know it will pass and fingers crossed eventually I will get better but can’t quite see that at the moment.
Take care everyone and keep safe,
Thank you again for reading my post,
Shirley x
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Remember Shirley, this lockdown is shorter and not so tight this time. You will still be going up that list for your Ablation. I had mine last week and I had been told that it wouldn’t be till at least next year.
Today is maybe just a bad day. You’re allowed some! Tomorrow can be better!
Cup of tea and a good book? Takes your mind off. ❤️
Thank you so very much for your reply it has certainly helped me ‘see’ a bit clearer. I am glad to hear you had your ablation, hope you are feeling well and take it easy on your recovery.
These are hard times for us all - I can fully understand how you feel.
You wrote
"I know it will pass"
Hang on to that thought and know that it WILL pass. Better days are ahead and you'll be able to start your walks again. It will be spring and summer again before we know it. I'm sure you'll have things sorted by then and have something to look forward to.
Thank you for your kindness and support, it is a great comfort.
Just had the post delivered, have received draft copy of my will from the solicitor, I forgot I had instructed them, needed to get it done out of the way! Oh the practicalities of life!!
Thank you again I really do appreciate your kindness, keep well and safe.
Not a lot of help I know Shirley, but we all get down days but invariably we get back on track to fight another day. I also know that we cannot believe everything we are told by thems that tell us what is going on, but all the signs are suggesting that by spring we will start to see improvements so we have to believe in that and try to be optimistic about the future.
I wasn’t going to mention this, but today is my birthday and nobody is allowed to feel down on my birthday.......😉👍😉
Sorry to hear you are low today.I think every one of us has felt like this at times . It's a frustrating condition!
Think positive though, this shorter lockdown should not impact too much on surgical lists .
Also enjoy your view!
I get atrial flutter and at times it is draining I agree,going upstairs is an effort etc. I never suddenly get up and go ..stand up slowly and take my time. Raising your arms for washing does it for me too. Can you lower your line or twirly thing?
Thank you for your reply and virtual hug, it is such a comfort knowing you understand what I’m going thru today, all this kindness has helped me so much. I will look at lowering my twirly gig washing line, never thought of that !
This time last year I was 3 weeks into recovering from my 1st ablation & I felt quite poorly & down as I also developed flutter side effect according to cardiologist of Flecanaide. I had a cardioversion 2months later which lasted just 2weeks & 2nd ablation in Feb this year. This morning as I sat in my car drinking a coffee with the sun shining down I thought back as I do very often & felt so grateful for the care of my ep for giving me a quality of life a year ago I never thought possible. Each day then was a struggle - af/flutter/ectopics changed my life in many ways. I was afraid to go for a walk as my heart would speed up & even walking up a slight slope would make it worse. I had to sit with a hot water bottle no matter in order to help stop shaking after heart rate slowed down - sometimes for hours or days. I didn't think twice about 2nd ablation because for me personally I felt I couldn't feel worse & couldn't wait to get it done. I can look back on the last year & see how far I have come - some days it still feels like heart wants to speed up & go into af - but never to 180-214 beats as it was before 2nd ablation. I understand how you feel as will so many on here. make sure you let us know how recovery goes - because with the help & guidance from your cardiology team you will get the ablation done & be on here telling us about it.
Hello Gowers, thank you so much for your reply, I am glad to hear that you are now well. I will indeed let you know how I get on, I really do appreciate your kindness, understanding and support. I may be living alone but with the wonderful support of you and the other kind folk on this forum I realise I am not alone.
Thank you for sharing; I know about those washing line arms.......and feeling exhausted because of the meds and the flutter.
I hope all the virtual hugs and caring words help you, as much as they have me over years' of dipping into this lovely supportive forum. Add mine and, if you can, look forward to better days to come.
I’m jumping on this post a bit, could someone tell me why so many of you have had ablation done. I’ve never been offered anything like this my AF is kept under control with medication, I also have fibromyalgia and COPD or is this why I’ve not been offered anything maybe. It’s very confusing that nearly every post for AF has some sort of heart destruction therapy rather than control.
Hi try again Leonardo. Sometimes posts slip down the page and could be missed.
Briefly ,ablation is usually suggested when drug and lifestyle regimes can't hold the AF in control.If you are,like some people,assymptomatic,(your quality of life is ok)you may feel it is not necessary .Other options include pace makers.
Techniques are changing for the better all the time and who knows what night be on the horizon ?
Someone did reply and you said you didn’t feel ill in spite of unstable HR during night (Apple Watch?) so I don’t think anyone felt another reply was needed.
When I had flutter I could not stand without feeling faint and having to lay down, on the last occasion (Dec 2018) it did not go away, eventually blue lighted to hospital, when wired up went to toilet but went faint again, they thought I was going into cardiac arrest (monitor shown such activity), within 2 minutes the crash team were there putting pads on me (to give my an emergency CV), and I was just as quickly taking them off saying this always happens when I am in flutter and get up (looked a bit like a Monty Python sketch). Good news is they gave me a "proper" CV 4 days later and whilst it took some days to recover, I did not go into flutter again. Went to the top of the ablation list and got ablated 2 months later. Again a long recovery but now as good as new (nearly - I still get MAT occasionally but it does not last for more than a few seconds), only on 1.25 Bisoprolol with more energy than I have had for 20 years on drugs and living life as I should.
I write this as you may well be in flutter (some cannot feel it so much until they stand or do something energetic), and to say that flutter is one of the easiest to fix and most reliable ablations to get. Keep us informed of your progress
Thank you Shcldavies for your reply and support, will let you know how things go, fingers crossed I will get my ablation done as soon as my EP can get me on his list. Worried now though that with the rising covid situation it will be quite some time yet.
We are all in difficult times, take care and thank you again for your support.
Sending love and virtual hugs. Yes, things will get better although it might not feel like it at the time. I am recovering from my second abalation (a week ago). Covid has had a ripple effect. 6 weeks ago I was put on waiting list for second ablation and EP warned me it would be 6 months or more. 2 weeks later I received a telephone call offering me one in 4 weeks time so it worked in my favour.
We are all here anytime you need us and can empathise very much with the difficult days.
Hi Shirley, I hope this morning finds you feeling a little better than yesterday. It must be very difficult for you not being able to get out for at least a short walk, I know how I would be feeling if that was me. Strangely I'm just listening to a song on the radio with the words, "this storm will pass if you hold on tight...tomorrow is another day" Please do that, hold on, as each day that passes will bring your ablation closer to you. Always here if you need a chat.
This sounds most debilitating and I totally empathise with not walking; I quarantined for two weeks on my return from Spain with an increasingly wired dog and was ecstatic when I finally was free. But it sounds as if even normal everyday activities are having a really detrimental effect on you. If you have another ablation in the pipeline I would email or ring the EP's secretary to alert them to how bad you feel and say that you are prepared to take a cancellation at short notice. Very best of luck, and take care.
Lovely blue sky here - sun everywhere around here, not a drop of rain to be seen. The path that the EP takes to feed his wires and gubbins into your heart is very straight forward and not all kinky, For this reason it is usually very straight forward and successful. Flutter is quite common after open heart surgery and is a day case.
The hard bit is sitting /lying still for a few hours while the puncture they made heals over. You get a free cup of tea, sponsored by the NHS and a quick chat along the lines of "Are you feeling all right", "Yes, what about the pills I take"? "Throw them in the bin " he said and sauntered off".
Great success all round . The flutter went and has not come back. Get a pair of walking poles, stand up straight and adjust your poles so that your forearms are parallel with the floor and practice in your living room. Four points of contact you will make you much more stable. Have a bit of practice and you will be zipping along like a well fed rambler.
Thank you for your reply and advice.The walking poles sound a great idea, will certainly get some once ablation has been done. I really do miss terribly not being able to go for my walks, but I need to keep positive, and I am trying very hard to look to the future and many more happy days in the great outdoors. Just need to get this darn flutter sorted!
Hello Shirley, I think at times like these this wonderful site comes into its own and more so if you live on your own on top of which the restrictions of COVID-19 don’t help. I also have had a nightmare 2 weeks, after 3 months without af and suddenly many long episodes (24 hrs plus) with 2 hospital stays for af heart beats over 185 at times. The morning e mails were such a comfort. Thankfully I’m home and have managed to speak with my cardio. The hospital were wonderful and the nurses work so hardThe magic of this site is the outpouring of understanding and kindness and that feeling of support which makes one feel not alone. I do hope you will be feeling better for having shared with everyone. This condition is horrible and although we all have our own journeys I know that I would find it harder to cope if it were not for you all. Thank goodness we found it. At times like this we need to make a cuppa, read a good book and have a choccie biscuit. Meanwhile we just have to believe we WILL get sorted.. Sending you and anyone who reads this a great big hug x
Thank you so very much for your reply and kindness. I am so sorry to hear of your recent dilemmas, I do hope you are feeling better now. Yes, this site is truly amazing, the kindness and support from everyone can certainly work wonders! I don’t know how I would cope at times without you all. I have just made a cup of tea and now reading your kind reply has made me feel much better, thank you.
Take care and I hope you continue to be well.🙂
Thank you for the lovely hug, here’s some flowers 💐 for you.
Hi Shirley, I'm pretty much in exactly the same position as yourself.
I had my ablation in late June and I am actually worse now than I was before the ablation. I'm having attacks every other day and they are lasting from anywhere between 30 minutes to 7 hours and am also on the list for another ablation and just waiting to be called in.
When I get AF it is actually quite violent it seems a lot of other people can't actually feel much, for me it's horrendous. I describe it like their being a horrible storm outside with howling winds and driving rain and I get pushed out the door and have to stand in it for a random amount of time and between 30 minutes and 6 or 7 hours later the door opens and I'm allowed to step back into the calm and quiet of the house.
Fingers crossed we both get some help very soon...
I am so sorry to hear you are also struggling. Yes this horrible condition is so overwhelming! I hate the way it makes you feel so helpless at times. It can be so scary, especially in the wee small hours. I have always being alone and have managed to face life’s challenges full on and moved on, but this demon is certainly testing me to the limit!
I will 🙏🏻 that we both will get some relief soon.
Please feel free to PM me if you want to chat further.
Thank you so much Eastwick, I really do hope my EP can get me on his list as soon as he can, but realise it may well be sometime. The support of you all is such a comfort thank you again.
Hoping to hear that you are getting that ablation! For me it has made a great differenCoVid does add an extra dimension but here, patients are kept totally separate...going for a shoulder replacement next week with that thought in mind!
Hello Shirley. I hope you are having a better day today. I’m sending you a virtual hug from the U.S. We are all having trying times this year. I too have had a very tough year. When I’m feeling down I spend a while talking to the Lord. One of my favorite quotes when I’m feeling down is:
“But I know, somehow, that only when it is dark enough can you see the stars.” Martin Luther King, Jr.
Thank you so much for your support and hug from all that way across the pond.
I do so much appreciate it. I am so sorry to hear that you have also had a difficult time, I do hope things are better for you now. Please feel free to send me a PM if you would like to.
Thank you for the beautiful quote.
Please take care and keep well and safe.
Shirley x
For your blood pressure keep well hydrated and possibly add some extra salt to your food IF SAFE TO DO SO. Ask your Doctor. Wear support stockings to keep blood in upper body.
My 39 year old son takes many meds and his pressure can drop to 64/48 ! Doctor gave us only these suggestions I mentioned. Do talk to your doctor. Good Luck.
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