Well, I am seeing Professor Ng from Glenfield this evening and my ablation is booked for Tuesday 26th March.Thank you to everyone who gave me a vote of confidence previously .....but ......
I am running scared now. I read too much and have just read an American article that says the risk of death is 1 in 200, now those stats are a bit too close for comfort for me!
I am under an incredible amount of stress at the moment trying to look after my 95 year old mother who has turned aggressive on me and a brother who has severe mental health issues along with Parkinson's.
I fear I am not mentally or physically strong enough and although I know the beast won't go away I don't get episodes (as far as I know) very frequent (between 3 - 4 months but very symptomatic and go on for 36 hours).
It's a wonder I haven't had a heart attack by now as I am ashamed to say the family dynamics lead to a lot of shouting and screaming which is not good for my health
I am equally nervous about the long term use of Sotalol.
I suppose my question is what would you good people do in my circumstances? I have heard horror stories around recovery 😔
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Karendeena
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Gosh you’ve got your hands full.No body can advise you about your ablation. But you can and should get help with your Mother and Brother does he have a community mental health nurse, if so reach out to them if not contact the crisis intervention team. Your GP should be able to put a referral in for your mum for support.
Is Andre Ng at Glenfield, if so I’ve heard great things about him.
Even though I’d had 4 ablations none completely successful, I’ve had respite from my symptoms after each one and I’m still here to tell the tale. You’re bound to be anxious, they couldn’t stop me shaking one time. If you proceed you’re going to need some help afterwards caring for your family members. Good luck with what ever you decide
Thank you ❤️I have tried everything with mum and brother. The problem is mum tells the social workers she can do everything because she believes she can and is hanging on to her independence.
Brother is mentally destroyed and this has impacted on my mental health as it's all around me all of the time. I really don't know which way to turn now as I have no other family 😞
Yes, Professor Ng is at Glenfield. I found hrin through an article he wrote some years ago in the Sunday Times.
I can only imagine your home situation but it certainly sounds very stressful. I have quite alot of stress at times with my situation and can get very sweary I'm ashamed to say 🤔 (if only my mother could hear me....).
As far as having an ablation goes it really isn't so bad . I've had 4 and didn't find the recovery a problem at all. I certainly wasn't mollycoddled at home. Chance would be a fine thing !
I also tend to read too much about procedures etc and it can be rather off putting. I'm due to have a total knee replacement soon but to be honest I don't think my pain is bad enough and I don't relish the thought of my leg being cut in two ( the bones) plus all the things which can go wrong. As for 'Recovery' at home......it doesnt bear thinking about. I have husband with Parkinson's. I shall probably defer it. I'd sooner have another ablation.
Can your GPs surgery point you in the direction of some help?
Although the recovery is supposed to be more painful for knees than hips I don't think what is actually done to you is any worse. Your thigh bone was cut and the bit that joins to your pelvis was ripped out to allow for the prothesis - yes it really is a brutal op! You have had the hip op - why be so wary of the knee op? Also if you defer you might not be able to get it done when you really do need it.
Thanks Auriculaire. To be quite honest , if I lived by myself I could manage with just friend or family calling in. Unfortunately I'm caring for my husband with Parkinsons and he's gradually getting worse. It's 2 years since hip replacement and he wasn't so bad then. I have pre op assessment on Fri & will decide after that.
That's tough. I'm amazed that it's two years since you had your hip op! It doesn't seem that long. Do you feel the hip op has been a complete success? My left side has left me with pain in my thigh due to the metal cable tie round the femur. The surgeon pooh poohs that the pain is due to this but my GP has no doubt and rolled his eyes when I told him what the surgeon had said!
Thank you. You must be dealing with a great deal yourself ❤️It's tough, very tough and the person I was had gone as a result. I used to be so full of life and going everywhere, now I feel it's been bashed out of me. I am surrounded by illness (my partner has had one thing after another for the last 9 years) and it has destroyed me. I used to be a positive, energetic person, always doing things or going somewhere.
GPs don't seem to help, all they say is ignore mum's behaviour. I feel I have nowhere else to go now and the ablation on top has really scared me.
Professor Ng said I need to be in the right place but also said that if I don't have it done now I will be off 'the belt' and then waiting again after which time the afib may have progressed and be very difficult to treat
I can only reiterate and say that ablations are really not that bad at all. It's the thought of it. You will wonder why you worried so much. I can assure you that I wouldn't have had 4 if they were that bad. Not to mention my 26 non elective DC Cardioversions.....
You need to get this out of the way. It will be a weight off your mind.
OMG-you sound like me!! I have two dependent family members living with us -one with schizophrenia and the other with severe bipolar disorder -the intensity in our household is through the roof, unimaginable and extraordinarily sad. I wonder if chronic stress is behind this afib. I am scheduled for an ablation in three weeks but first I am flying to see my 91 year old mother across the pond who has a blood cancer. I quite simply cannot afford for anything to go wrong otherwise the family unit will not survive but my husband said I need it done because he can’t handle me having a stroke on top of this. I do have my husband to help-do you have anyone who can step in? I will probably go through with it so I can strike that off the list of things that keep me awake at night with worry. Do you have a mindful app like Calm or Headspace? Sometimes we have to put our own health first otherwise we can’t take care of our loved ones…
Thank you. Yes, I used headspace. I find it good for me to help me sleep.I have got yo the stage now where I can't really be bothered with anything, it's all too stressful and I feel myself giving up as I am surrounded by negativity.
You have a lot going on too but I admire your confidence in just getting on with it. I am so terrified of the ablation that I am seriously thinking of not having it done
Who advised you to have one? They must think you need it. I am nervous, of course, but I have one of the best doctors to do it, Dr.Natale, and it sounds like you do too. Just before I had afib(and I haven’t had it since but my heart is a little erratic now at times) I met an acquaintance in his late forties who had recently had afib followed by an ablation. He was so happy he’d had it done and called it a little procedure.
Regarding your brother, it sounds like you may have caregiver burnout. There are online support groups for caregivers. There is also a platform called togetherall, (formerly big white wall). It is British and provides all sorts of mental wellbeing support and you may be able to join for free if your area is covered. Please give it a look, you may be able to talk to someone. I live in the US and we have no support for our loved ones and every day is a huge stress bucket, so I understand. Wishing you the best …
Sometimes we need to concentrate on ourselves. This is one of those times! Can you not get some respite help with your home problems to give you a chance to relax and recover in peace. I will add below our two fact sheets on preparing for and recovering from ablation. These were compiled by patients for patients so are a realisitic account .
Thanks Bob. Always appreciate your help.I cannot get away from the fact that I think I will be the 1 in a 1000 that will die from the procedure. I think it all stems from the health anxiety and mental problems thay my brother is having.
It's do bad, I am not even out of bed this morning and that's not me.
I was told last night that I may have to have a GA as technology has improved and it allows them to do the ablation in a shorter period of time and be more precise.
Thanks for that vote of confidence, really appreciated. I just can't help thinking I am going to be the 1 in a 1000!!
The fact that I have now been told it may be a GA makes my fear even worse. I am terrible 😔
Professor Ng told me last night that technology has improved and the procedure takes less time and can be more precise. I suppose I should be grateful that he will be doing the ablation. If I cancel the afib may become more difficult to treat and I may not get him next time
Karendeena is that Dr Ng in London? If it is I would hop skip and jump there! He is the nicest, most competent, doctor I have ever met. You are in extremely good hands. You are a very lucky woman to be in his hands. Good luck.
Hi there, Professor Ng is at Glenfield teaching hospitals which is supposed to be the best heart hospital in the Country. I understand Professor Ng is known Nationally and internationally so probably is involved in London but not sure
I was on the same dose but my heart rate went too low so it’s now 40mg x 2 . I’m also under glenfield. I find the af nurses are very kind and helpful there. I hope you can sort things out with your family. Without the stress of AF it will be one less thing to worry about.
I am now gradually coming off Sotalol. Dr Sandilands said to stop it, when I had my follow-up appointment. As they work together, your Dr will probably get you to stop it after a while too. I am stopping it very slowly, at 20mg at a time. I’m now down from 80mg to 60mg and at the weekend will start to reduce to 40 mg. I’ve been on them for a long time, so was worried about stopping them. Hopefully I’ll be ok. I’ve been told I will have to stay on Anti coagulants for life though.
Hi Karendeena. Have you tried to get help with your mother and brother.? By the sound of it, you should be able to have some help with care. It would be a shame if you didn’t go ahead with your ablation. It will help you to not to have to worry about AFib anymore. There is always a risk with most things, but the risk with ablation is very small. It is not 1 in 200 , that is not correct, it is more like 1 in 1000 or so. They are very experienced at Glenfield.They put me at ease and I had a successful ablation and went home the next day. Just had to take it easy for a while.Get some help from social services for your Mum and Brothers care and you’ll be fine, I’m sure.
Thanks Sixtychick, I remember your post prior to your ablation. So so pleased for you that you are doing well ❤️Professor Ng is a top EP and I know I am in the best hands with his team and the best hospital.
He did say the recovery is different for everyone some sail through it and some have a bit of a rollercoaster ride for up to 8/10 weeks.
Did you have a GA? I was originally told it would be sedation but last night Prof Ng said it may be GA as technology has improved and it allows them to be more precise and the whole process takes less time. I am so scared as I think I am going to be that 1 in a1000 and to be asleep during the process gives me the fear of uncertainty'.
I have tried many times to get help for mum, she has been assessed and because she tells them she can do all these things they believe her. I tell them it's because I am doing everything in the background and all they say is she is able to make her own decisions and the only way I can bring it to a head is to step back and let them fail which is a very difficult thing to do. Mum was my best friend and we travelled the world together, it breaks my heart.
I let my brother stay with her for company after his stroke, that was over a year ago and he has now got his feet firmly under the table. It's mine and mum's house so you can see how difficult it is for me. I have had to move to my partner's house and we can't successfully live together as we have different ways. It's quite volatile all round 🥺
How is your recovery? Do you get any problems or pain?
I had a GA for both my ablations. Both EPs said they preferred GA to sedation for anxious patients …. which I was. Maybe thought I might jump off the table!
Hi Karendeena, reading this post and the next one, you really have to toughen up. That lodge in the backwoods sounds ideal, go there and turn off your phone! If there’s a crisis it will prove you need help and if there isn’t it shows you can step back a bit xxx
Wise words, this is what the professionals say too but I think the problem lies with detachment. I know I am older but my mum was my best friend for many many years. My dad died when she was 60 and I was 31. Newly divorced we went everywhere together and travelled the world. Suppose she was like a partner to me and I miss those times. It breaks my heart 💔
Hi, I had sedation. When they took me down to the cath lab, it was very dauntng in there with all the equipment etc. Quite a few staff in there too, but they were reassuring. The jabs made me feel a bit weird, but after a bit it went off slightly. As you’re having GA, you won’t have that. I took it easy for a couple of weeks. just had palpitations afterwards for a few months, but they’ve stopped now. Apart from that, I was ok.
I should think you could contact social services again and explain you need to have help for a short while, as you’re having a heart procedure and need to rest for 2 weeks, so will find it hard to look after your Mum and brother and you could get a letter from the Doctor to back you up. If you can afford to pay, you could get a care agency to help your Mum and brother. . I worked for 3 care agencies over the years. I started SRN nurse training , did a year and left. I didn’t like all the theory and exams.It was like being back at school, so I went into Dental Nursing instead. When I had my kids in the seventies, I went to work for a care agency, as I could choose the hours I worked. I did that for several years, working for 3 agencies, (not at the same time) and worked as a dental nurse again, when my kids grew up. You didn’t need to be refered by social services then, if you were paying for care yourself, I think that’s still the same now.
I suppose I’m lucky in that I’ve lived a pretty good life and have been married for 52 years and have a good social life, being in 2 WI groups and on the committee for one of them. There’s always something going on and I’ve lots of friends and also have my family.
Hope everything goes well for you and AFib stays away when you’ve had the ablation, at least that will be one thing less to worry about. Cath
Hi Sixtychick again, just to tell you I've edited my response as I was mortified it read "So no pleased for you!" I meant SO SO PLEASED FOR YOU X ❤️Sorry, must proof read before I post!
Hi - Look I recognise your anxiousness as the date nears and the risks that are associated being a factor - Felt similarly and questioned what I was doing but as my AFib had become so regular and symptomatic I knew I had to accept the risk and go for it - had mine December and whilst my experience wasn’t quite plain sailing post Op, the procedure itself was fine and after a few weeks of Blips which were challenging but no more challenging than the aFib tbh, I’m about 9 weeks since all settled and No AFib since so fingers crossed - Good luck with deciding
Hi there, what was you frequency of episodes and how long did they last?Mine are around every 3/4 months but last up to 36 hours. My EP says I am on the cusp of them becoming persistent.
I still think my times in-between episodes are pretty normal and having read a lot (perhaps too much) people seem to have a bumpy ride and symptoms are often worse, this is exactly what I don't want to happen.
I am uncomfortable during an episode but I can go about a normal day and my heart rate doesn't escalate to the 170bpm it used to, it hovers between 70 -100
Before my ablation it was every 2 days generally, sometimes daily for a few days and episodes would last between and hour and 8 hours but would always go back into NSR without any action - rate would be anywhere between 140 and 180
That's more frequent than mine, although the length of my episodes are exhausting 😞 The rate stays pretty much below 100bpm but my BP drops significantly. I always revert myself but Prof Ng says I am bordering on becoming persistent, my episodes have always been like this since I was diagnosed.
Wow -- you certainly have your hands full. Only you can decide what's best, but my feeling is that you come first; if you're not feeling up to par, how can you possibly handle external forces up against you. With so much stress in your life, a-fib certainly can't simmer down on its own. One thing at a time -- you come first though. Best of luck to you.
Yes, it's tough, very tough, but the ablation is just another worry I can do without. Nothing convinced me that there will be major improvement. I am reading that the heart gets really upset. I want this to improve heart function but stories tell me otherwise. Is it worth it? I don't know, that's the dilemma I have Will the worry and phone calls stop from mum and brother, I very much doubt it and I won't be able to help
I know it's tough. I, for one, have been through a very stressful period in the past -- not similar to your situation, but maybe as traumatic. It only worsened my a-fib to the point where I almost begged for an ablation. It helped very much, though as you say, there's the healing process where your heart will protest for a while. I hope this stressful cycle in your life eases up soon.
I've had 3 ablations. The first was botched by a mediocre EP. The second and third ones were done by an EP at Cleveland Clinic. He fixed what the first EP messed up, and the second one done by him was a "touch up" of new connections that grew around an ablated vein. Since then (Dec. 2022) I've only had a couple episodes, very mild and short in duration.
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