A bit of a titter and also a sombre statement!

[wilsond]

Some of you will have read my post on being concerned at being discharged from Proff Osman at UHCW,and subsequent email to him. As he was by then on leave,I contacted the arrythmia nurse on same subject,but also to report an AF episode a few days after sending the email.Subsequently, she has put me into clinic today and back on list

Imagine my surprise to get an email today from the Proff ,saying ' AF is not able to be cured,and usually worsens with age. However, as you are stable ( not really having had 3 AF in last 3 months and said so) my colleague Tom (???) was correct to discharge you to GP care. If there are any problems,I'd be happy to see you through referral through them. All the best'

Just thought members would appreciate knowing I feel in capable hands haha. I expect pressure of work but I was surprised he forgot or didn't whizz over my notes!

Also the sombre statement which we all suspected is there

"Af cannot be cured ."

Managing this daft condition is the best we can do.

Anyway ,off now to spruce myself up for my outing. I go out to medical appointments more than socially these days ,it feels!!

Upwards my friends.

Brief resume later.

Xx

[BobD Volunteer]

Reminds me of that face book clip of a lady putting on her glad rags to take the wheely bin out during lockdown,

I think he is right though. There is no cure because we don't really know what causes it is? Treatment is for symptom control. It s a bit like being short sighted I guess. We know the mechanics and we can treat it (with glasses) but not why some people get it and not others. Thats always the problem with conditions. Diseases are much easier to cure.

[wilsond in reply to BobD]

He is right , I'm sure too. Yes I recall that clip!

[JOY2THEWORLD49 in reply to BobD]

Hi

Well, we ladies want to look good when we go out!

Her only outing of that day!

I don't see the line of thought Bob D.

She might find Mr Right also dressed up on this special occasion. Ha ha!

cheri JOY 75 (NZ)

[Ilovedogs12 in reply to JOY2THEWORLD49]

This made me smile, thank you Joy😁

[wilsond in reply to JOY2THEWORLD49]

Lol! Made the most of the day trip haha! Thanks Joy xxxx

[Bagrat]

I am convinced Consultants cover their ears and sing lalala when it is explained how long and tortuous the path to a re referral is via GP. Couldn't really like your post. Maybe they should call it AF Syndrome. Definition"People also ask

What's the difference between a syndrome and a disease?

A disease usually has a defining cause, distinguishing symptoms and treatments. A syndrome, on the other hand, is a group of symptoms that might not always have a definite cause"

It won't make us feel any better or worse but seems to fit. On the other hand we know it manifests as an electrical malfunction so we do know what it IS but not the cause.

Don't you just love rambling on....

Still think best definition is one I first heard from BobD a mongrel condition.

[wilsond in reply to Bagrat]

Exactly so Bagrat! Could not put it better myself! Xx

[JOY2THEWORLD49 in reply to Bagrat]

Hi

But some of us do know what caused it. Thyroid problem.

Mine Thyroid cancer. So remove it and the my heart should return to normal you would think.

Nah! Byt 4th year Neck Scan check shows some still there. So perhaps when that goes by ablation - yes ablation through Radio Active Iodine infusion it may go, Fingers crossed. But why does bpm go down to 47bpm avg at night! ????

Here's hoping one morning I awake to a sensible heart obeying what normal sinus is!!

I can only hope and pray eh!

I was one of those who was rushed to base hospital with Stroke Embolic, Rapid & Persistent AF and Day 4 Thyroid Cancer. The Scanner of carotid arterteries found a shadow on Thyroid.

cherio JOY. 75. (NZ)

[Outsidethelines]

When I had my ablation follow-up with a senior consultant recently, and told him I had started having AF episodes again since the operation, he calmly told me that ablation is “not a curative treatment”.

He's right, I guess, but nobody said that to me BEFORE I decided to have the op.

He also told me that a second top-up procedure is necessary after 30 per cent of ablations. And they definitely didn’t tell me that before the operation😂

[DawnTX in reply to Outsidethelines]

I have known from day one that it cannot be cured, and that the things that they do for us or to us are simply Band-Aids and sooner or later they fall off. I have noticed there are people on here who state that there AF has stayed under control after an ablation and that is terrific but I have a feeling the numbers of people who have that happen are very low.

I would not be surprised if sooner than later ablation is ruled out as a treatment. My first ablation lasted six months my second about a year and a half the third one was a total failure, and I ended up with so much scarring that my new EP would not even consider doing another ablation on me except when I had the AV node done for my pacemaker. I am always surprised reading on here the number of people with numerous ablations. my EP stated quite clearly that you have a minimal chance of getting the right spot. it seems to me that many EP’s seem stuck on certain treatments, such as meds, ablations, and cardioversions There are other options and combinations of options. The trauma that the heart takes when these things are being done over and over again really makes me concerned. My EP does not believe in continuing to try things that fail, especially considering the fact that yes it’s true. There is no cure.

in my head, my view of a fib is a string of Christmas lights when a bulb shorts out and you replace it then a few hours later, another bulb and another and another up and down the string. You just can’t keep up with it and you don’t know which one is going to fail next, my EP nurse gave me a great way to remember my two doctors. My EP is the electrician anything having to do with my pacemaker and my a fib, etc. belongs to him. The rest of it goes to the plumber my cardiologist now this is in regards to the heart , the body that’s why we have a GP but we have specialist for a reason

I never had a cardioversion until just before I got my pacemaker. Because my tachycardia was so bad it was done to try to buy sometime as they prepared my pacemaker for me. It lasted 3 1/2 weeks Christmas week. They tried one more and it was a total failure, it took three shocks just to get me going again it was very hard on my body. I even had bruising. And marks like a slight burn I’m glad I wasn’t awake. They had done the cardioversion and we’re going to attempt to try one more medication which involves keeping me in the hospital for five days being monitored constantly. None of that ended up happening because of the failure of the cardioversion. if I had a doctor that wanted to keep giving the same thing over and over again, I think I would question and get a second opinion you don’t have to be a rocket scientist to know that there are other options. They may not be right for you, but you have to at least ask about things and your doctor should explain why if you can’t get it why it is not right for you.

I learned to ask questions because I let my fancy doctor and the way he was treating me to go on too long and I ended up in heart failure I was emotionally overwhelmed and exhausted as well as physically at that point if I felt like I do know, I would’ve come up fighting wanting to know what is going on. I don’t mean question your doctor on everything. Most of them are pretty wonderful, but just remember it’s your. Body.

[secondtry in reply to DawnTX]

Amen! Gone are the days when you take a medic's words as gospel, approach with care, do your own research, keep an open mind, ask questions firmly.

11 yrs ago I was told by the medics ablation is the only way and not just one. I requested an increase in my Flecainide dose instead which gave me AF free for a decade. I turned down the offered anticoagulant.

I am now approaching another stage of AF/Flutter and at 70yo I just hope I have enough energy to take a similar approach 😂.

[DawnTX in reply to secondtry]

good for you. They do seem to want to do ablations much too quickly. That was the case when I first had my initial a fib attack or whatever you call it. I was put on medication immediately, and that did help the only thing I worry about with you is not taking an anticoagulant, I don’t know if you seen as many people on here as I have regretted not being on one. Unless you are a person that really has a problem with them. I have had no issues. when I first started them, I did bruise easily and quite ugly, but for whatever reason within a month or so that eased up. It depends on what is causing the bruising. My dog can give me a paw print of bruising if he stands on my leg when I’m sitting lol don’t ask he thinks he’s a Chihuahua. He actually is 69 pounds. I took one fall and actually only hit my shin but later that night I had spider webbing bruising all the way to the top of my thigh. I also landed hands and turned my palm purple now it’s very rare except when they take my blood lol I do wish you would reconsider and get yourself on an anticoagulant having someone in the family with a stroke. I want nothing to do with having one if I can avoid it I am two years older than you. Xarelto. was the first thing I was put on.

good for you about questions as I said, it may have been the only thing they had at one time I don’t know, but it is overused as far as I am concerned, considering the odds of it being any type of success. The third one that I had created such a mess was done by the pier pioneer of it and was supposed to be amazing. he came from research and that’s where he belongs and he should still work on what he did. I don’t know if my new EP ever let them know what happened. I’m pretty sure he knew because he abandoned me. I could not get a phone call back from him or his staff and he is with a world renowned hospital. Maybe I’m wrong but I feel that because his procedure failed. He just wanted to wash his hands of me if I had been stronger like you at that time I definitely would’ve gone for a lawsuit although I have a feeling all the paperwork they throw us , something in there to keep them protected. It was after the procedure that I began to be unable to walk among other things most of the time if I stood up, I was borderline blacking out yet I could not get a call back. Don’t ask me why I did not want to go to the hospital, etc. , and I sat it out much too long according to my EP now it could’ve been the end of me. Then again my heart not pumping the way it should. My brain definitely was not working and no one else really knew what I was going through it was a very scary time . I looked back at that and I can’t believe that was me not acting on it.

The EP I have now thinks outside the box. He doesn’t do everything. The hospital wants him to do which includes continued ablations, etc.. bottom line he made it clear to me. They want him making money for them sometimes he’s not the most popular but he is with his patients. The procedure he created for me. He actually presented at something he attended in Dallas. They requested he return to teach the EPs there in an attempt to help to save more people like me. what he did for me was not easy and was over six hours maybe more I forget now. He thought of a plan, but until he was actually working on my heart, it wasn’t fully put together because he had to see exactly what he was working with. I was such a mess. I’ve had people say it was risky to me. It was brave of him and if he hadn’t done it, I wouldn’t be here most likely. He could’ve just thrown his hands up put me on a pill and called it a day. He could’ve ignored what he saw in there for scar tissue , and tried another ablation. Instead, one of the first things he said to me after we met was you’re not going anywhere I’ve got this. I’ve got you. He said it again when I woke up from the failed cardioversion. I opened my eyes to see him, holding my hand, patting it saying that to me because I had tears running down my face when I was first waking up.

some people just need to realize questioning things doesn’t mean talking down to your doctor and not listening to him at all. It is talking to him about things that concern you. I still do it if something doesn’t seem right in fact when I see him next month I will be doing that. I mentioned previously I had a couple of weeks where I swore it was a fib feeling, but nothing was picking it up. At this stage, I believe I know the difference between a fib and flutter and other things. it wasn’t a one time deal it continued as I said for several weeks after an extremely unusual day that I knew took a lot out of me physically. I will make sure I don’t repeat my mistakes that day, but I would still like to know why all of that happened for so long and no one could see it

best of luck you sound feisty and sassy, as I can be, and yet smart enough to know to respect your doctor.

[secondtry in reply to DawnTX]

Agreed. I am actually on a DOAC for 6 months now although I sometimes wish I had insisted on warfarin, I may still swop.

I have an uncomfortable feeling that anti-coags have been pushed onto all patients as convenient and as 'an accepted protocol when those fit with no comorbidiies just AF may not need it. York Cardiology on YouTube refers to this in his video 'Why I don't believe Afib causes strokes'. Almost everybody here quotes a small study with a questionable sample done many years ago that you are x5 more likely to have a stroke if not on anticoags; personally I don't think that data is sufficiently reliable to adopt it as a mantra.

[Auriculaire in reply to Outsidethelines]

It is the job of surgeons to do operations and EPs to do ablations. They only tell you the worst of what could go wrong as they are probably constrained to do so otherwise "informed consent " is not informed. Nearly all open abdominal surgeries result in the post op formation of adhesions. These can be extensive and cause a great deal of pain. They stick your organs together and cause problems with future ops. They are particularly common with total hysterectomies . I was certainly never informed of the possibility of this happening before my hysterectomy let alone that it was probable.

[Singwell in reply to Auriculaire]

Same here re abdominal surgery. Causes me significant muscular skeletal issues and digestive problems as the repair was to the stomach wall.

[Cavalierrubie]

Never mind Wilsond. Everything is a battle these days, especially with NHS. You are not abandoned on here and definitely not alone. Chin up and go treat yourself. 🥰

[wilsond in reply to Cavalierrubie]

Going away next weekend to our favourite bolt hole,Llandanwg North Wales, terrible phone signal. How awful can it be haha. Thank you,appreciated xxx

[Cavalierrubie in reply to wilsond]

Had many holidays in Wales. Enjoy. Xxx

[Teresa156]

I think we are damned if we do and damned if we don’t have an ablation - that’s how I have felt about it for some time.

I’m sorry you had to have all this confusion from them….hopefully it all come good in the end.

[Ppiman]

What I like most is the sense of a person behind that missive. I warm to that since, in the future, when ChatGP becomes our doctor, god help us. 😶

Steve

[Cavalierrubie in reply to Ppiman]

Yes, make the most of it while you can. The future could bring robots with an analysis and diagnostic computer and we might even have to go private for that. 😫. God help us.

[Ppiman in reply to Cavalierrubie]

O brave new world, that has such people in’t!

This is one reason I am very forgiving of doctors and their foibles. The future's bright. The future's Orange!

[Cavalierrubie in reply to Ppiman]

At my age l don’t really want to know, or even care now. I have reserved myself to taking each day as it comes and very grateful l am of this generation. Have a good weekend Steve. 😀

[Ppiman in reply to Cavalierrubie]

You might appreciate this poem!

GETTING OLDER

The first surprise: I like it.

Whatever happens now, some things

that used to terrify have not:

I didn’t die young, for instance. Or lose

my only love. My three children

never had to run away from anyone.

Don’t tell me this gratitude is complacent.

We all approach the edge of the same blackness

which for me is silent.Knowing as much sharpens

my delight in January freesia, hot coffee, winter sunlight.

So we say as we lie close on some gentle occasion:

every day won from such darkness is a celebration.

ELAINE FEINSTEIN

[Cavalierrubie in reply to Ppiman]

Wonderful. Puts it all into perspective. There is a great peace in those words. “Be still.” A contentment that only comes with old age and a feeling of life’s work well done. Now it’s “Me.” time. Thank you.

[mjames1 in reply to Cavalierrubie]

I think I'd take a robot over half of the doctors I've had. A robot won't make you wait. Will not start walking out the door backwards if you ask too many questions. Would be up-to-date and evidence based. Would not limit treatment options to those offered any one particular hospital. And a robot can fake empathy, which many real doctors don't even attempt to do. 😊

Jim

[wilsond in reply to Ppiman]

Yes agree!

[wilsond in reply to wilsond]

Lovely words

[JOY2THEWORLD49]

Hi

Well, as I posted I had the same treatment and statement "You are stable." Yes but with persistence AF and the Diltiazem keeps my rapid npm down to 60s Day and my normal Night stays at 47avg bpm. Bisoprolol 2.5mg controls my BP.

I did get in "what if my bpm fall low during the day?" He said after thought stop the Bisoprolol.

Well that means my Systollic BP will rise and no med for Essential Tremor in left hand and feet.

Now after a COVID jab and had UTI untreated I had 3 jolts to my heart. 2 day 3 and 1 at day 4. Who can advise for that. Chemist said probably jab but the Dr said UTI. ??????

Also these Thyroid Cancer further tests that include no thyroxine for 21 days and low iodine 21 days I ask what about my rapid heart and past stroke.

I feel more confident about having a session every year even on ?s.

I'll ask Dr next appointment.

I know how you feel. But like me you have a leaky valve bicuspid? And results in regurgitation. Overall a severely dilated left atrium. But you said you were under a specialist for the leaky valve?

cheri JOY. 75. (NZ)

[Outtheresinger]

My commiserations! I contacted Arrythmia nurses in January and was told I was off the list and see my GP to be put back on. It’s now September and no sign of any clinic appointment despite me and GP chasing. I have AF for 3 to 4 hours mostly at night several times a month. This week my bpm’s were jumping from 37 to 180 in the space of a couple of minutes. Impossible to function when heart is so erratic and to makes matters worse I have been forced to halve the amount of anti coagulant because of excessive bleeding. I just want to talk to someone who can tweak my medication so I can reduce the frequency of my episodes and reduce my stroke risk! Maybe we could set up a protest group wilsond at least it would get us out of the house!

[wilsond in reply to Outtheresinger]

I'm up for that! I'll knock up a few banners! Seriously, I've found that contacting the relevant secretary for various medics over the years has been very useful. Ring main switchboard and ask to be out through to Cardio secretary, have your nhs ,hospital.number ready.

Best of luck!

[Singwell]

Yup - it's reality check isn't it! Perhaps the mini maze gives a better outcome as others here have reported. I think one of the big issues is - as we get older natural fibrosis of scar tissue from previous ablations means that we're more likely to see AF the return. This is what my EP told me. Sadly I also think in the NHS it's a matter of resources - we're older, hopefully retired (I am not and cannot yet afford to be although I definitely want to work less), and therefore younger people with families and worklife ahead of them are prioritised for repeat procedures. I wish it wasn't so, but there it is. Reality check. Hope you're doing well.

[Peacefulneedshelp]

I can agree no cure but I don’t agree it gets worse with age, I have made many lifestyle changes which has helped greatly. Don’t let them put wrong ideas in your head. Our minds are powerful and to tell someone you are going to get worse is the biggest piece of crap that one could say. Ugh! Rant over!

[mjames1]

Sounds like the Professor moved on from you, so I would move on from him and seek a different opinion. From a literal point of view, a fib may not have a cure, but there are certainly a lot of us afib free for years. However most are not in this forum, because they went on with their lives.

Jim