Bewildered

[shirlygirly]

Hi everyone, Ive had some news which has really shocked me and Im

finding it hard to get my head around it. When I started getting af I was

convinced that I would soon have it licked and life would go on as normal

no big deal!! that was approximately 10 years ago. How time passeswhen you

are having fun !! So I had the ablations etc etc not getting rid of it as quick as

I expected but still not overly worried. Then came the Pacemaker which I

really didnt want then came av node ablation which I was really loath to

admit I needed but the 15 weeks I waited for that were the longest in my life.

I have not really improved much since then. Having just been to the hospital for a check-post av node op I received a letter via my GP and one statement

stood out ( she is known to have Mild biventricular dysfunction ) well they

mighnt have known I had it but I havent heard it mentioned before.

I looked it up on Google and was horrified. Having now talked it over with

my husband and daughter who was there doing my appointment and they

have made me realise that although serious its not quite the end for me.

Obviously I have to absorb the seriousness of the long term effects and Im

having trouble doing this. Last year at this time I was discussing which walks

we were going to tackle and Im now struggling walking to the bus stop, with

a stick to counter dizziness!!

Im sorry for the rant but I could really do with help to address my concerns

and help me accept that I really do have some useful future. Im almost 3

months post av node ablation.

[meadfoot]

so sorry to hear you have had unsettling news shirleygirl and you don't feel as good as you hoped post your treatment and procedures. When our health is compromised our life takes on a different dimension and the emotional impact is never high on medics agenda sadly.

The shock of finding something out about our health we were not expecting or had been on our eyeline is daunting. Could you speak with your medic to get clarity and support. Hopefully someone here will have knowledge of the issue to help you. In the interim I wish you well and send a big hug. X

[jeanjeannie50]

I think the word to hone in on with your diagnosis is mild, but fancy you only just learning that you had this!

Honestly medics sometimes act as though what you have wrong with you is their business and not yours! Grrrr!

Do you think that you felt better, than you do now, before having had any heart procedures whatsoever?

Now watch this pendulum I'm swinging;

Mild

Mild

Try to turn the diagnosis into a positive and think how much worse it could have been if the word had been severe. It would be nice to know if there's anything you could do to help the condition or stop it from getting worse.

Have you been prescribed medication to help?

Big hug, my friend.

Jean x

[Buffafly]

Hi, what a shock to be 'told' like that! I really know nothing about it except what I just read on Wikipedia which suggests it is a long medical term for heart failure/weakness which is what AF treatment is supposed to prevent or improve. I suggest you go the the BHF site if not already done so, you can also speak to a nurse there. I really feel though that somebody should have spelled out your condition, hopefully in a kindly way, but certainly not to be mentioned as an aside 🙁 I do hope though that as time goes on the help from your pacemaker will enable you to get fitter again and maybe some less ambitious walks will be possible 💕

[shirlygirly in reply to Buffafly]

This reply is directed at the three who kindly responded.

I was dumbfounded when I read it, but it seemed to me that I

went for my check-up expecting to see my EP who had just performed

the my av node op to find out how I was. I perfectly well expect that

at some stage a cardioligist can carry on treating me from then on.

The EP'skills are more valuable elsewhere. But I would have thought

a 'Im passing you on for your ongoing treatment would be expected

and also an explaination of my condition as he sees it. But for no

indication even though I was struggling for breath and lead to believe

an av node op was the way to go. I still think I had no choice and still

hope that a few more weeks may see an improvement, fingers crossed.

I also remember my EP saying on my first visit you probably would benefit from a pacemaker. He said it in terms no stronger than that,

I of course poo poo the idea as up to that point I had af about 3/4 times

and this was about 7/8 years ago. He has always given me choices but

hes the expert!! had he at any time stressed the point I would have taken

his advice. Hes a nice man and easy to talk to and he would give me

options and I would say which and he would say right we will try that

then.

Im going to my GP for a long term conditions mot next week so I hope

to gain a bit more insight into what I can do to help myself. I do feel

a bit let down by not been given more help and information a booklet

even instead of finding out as if by accident.

I forgot to say that instead of my EP I saw a Nurse Specialist who

was very nice, organised an ecg and then called me back in as he

said I had slight odema. He gave me medication for that and he will

see me in 2 months.

As to the question do I feel better after the treatments, after my

ablations the af kept coming back and each attack lasting longer.

Last August it came back with a vengence and wouldnt stop and I

had a 3 line PM fitted in an emergency not by my EP who was on

holiday. It barely improved things hence the av node op.

I dont know the answer to the question. It does say on Google that

af can be a cause of the damage done to heart.

Thank you so much for your kind words I appreciate it and will let you know how I go on.

Shirley x

[Shepheart]

Hi Shirly, you said you have a 3 lead pm. As far as I know that can be part of the treatment for your condition, one lead in each ventricle helps them stay in synch. Maybe it’s a matter of tweaking the settings. And I agree on focusing on the word mild. As we get older our bodies no longer are young and vigorous, we are wearing out. I do hope your breathing improves and you can get more active.

[shirlygirly]

Hi, You are quite right but.... as I said my ep was on holiday and

I had a choice who should do the job and I chose another EP whose

name I recognised. Well he was definately present but I think the

job was done by a student, fair enough we all have to learn. He had

spoken to me outside the theatre to ask about my symptoms and

his voice was the one I was aware of near me and the EP was also

talking nearby. After I attended hospital for a PM check and to see

my EP he was quite annoyed at the job that had been done. One

lead had to be turned off and another not really well placed but working ok. He did mention redoing the job but in the end decided to leave well alone,!!

Not much I can do about that so things are as there are. My EP is

very well thought of and has a long waiting list so Im loath to think hes is at fault. I think Im just unlucky.

Thanks for your interest and thoughts.

Shirley.

[irene75359]

No wonder you were shocked. I think the problem with with experts in any field is that they become so familiar with their work they make the assumptions that a lay person should either understand or doesn't need to be told. But this should not be the case with medical staff treating patients whose lives and wellbeing are so adversely affected by insensitive treatment. A vital part of any doctor's training should be 'communication with the person in your care'. I think it so remiss that no one sat down and explained exactly what was going on and what positive steps would be taken to treat you. Please come back and let us know how you are. My warmest good wishes.

[shirlygirly in reply to irene75359]

Thanks so much for your reply, Im just waiting to see what happens

next week when I have my mot. It is quite a long time between appointments at the hospital, 2 months Im just going to browse the

BHF web site think that should have some good advice or maybe a

private consultation is the way to go. The problem is Ive had to shop

this morning and Im so tired now. My other problem which I know

others have is I think my husband has early stage dementia, I feel

guilty even writing the words, I will mention that at my GP visit as

well. Never rains but what it pours!!

Thanks for your thoughts

Shirley.

[irene75359]

More worries for you. Don't feel guilty, you aren't responsible, but I am sorry this is happening in addition to everything else. Good idea to mention to your GP, in certain cases medication can be used in the early stages of dementia that greatly eases the symptoms.