STROKES. : through the af forum i have... - Atrial Fibrillati...

Atrial Fibrillation Support

31,049 members36,651 posts

STROKES.

makeawish profile image
37 Replies

through the af forum i have gained lots of little nuggets of advice from different people and so i would like now to offer some advice to anybody who may read, this.last thursday a man of 56 yrs had a session of af with 168 on the richter scale!which only lasted 40 minutes.on the friday he visited his gp as his face didnt feel right.within the hour a ct scan and blood tests were done and a stroke was confirmed along with 5 days in the acute assesment ward and now a long journey ahead.so if your in any doubt,please go to your gp or hospital asap. i know this is true as some of you may have guessed,because it was me,but im still here so please learn from my small mistake and if in any doubt,GET IT CHECKED ASAP,good luck

simon

Written by
makeawish profile image
makeawish
To view profiles and participate in discussions please or .
Read more about...
37 Replies
BobD profile image
BobDVolunteer

Another salutory tale and aanother good reason to make sure you are all anti-coagulated.

Hope you get back to normal very soon Simon.

Best wishes

Bob

jeanjeannie50 profile image
jeanjeannie50

Good advice Thank you.

rosyG profile image
rosyG

Hope you have made a good recovery Simon- take care!

Hope you make a good recovery Simon, thanks for the post. Nothing like hearing it from the horses mouth. Koll

CDreamer profile image
CDreamer

Best wishes for your speedy recovery and thanks for the great post.

makeawish profile image
makeawish

thank you all for your kind words,by the way bob in one of my more clearer moents i did raise the subject of anti co,ags up,bearing in mind that i had seen the cardio on three occasionsin this year and was told it is was about the balance of probability!!! guess what im on now?? suspect some may not like it but im not going to let it rest yet,dont see why as,i kept telling them it was getting worse as i posted months ago,sorry for some of writing,laptops ok but spell checker in the head is broke temporarly simon

RobertELee profile image
RobertELee

Can I just confirm makeawish, you were not on anticoagulants when you had this stroke but you are now?

makeawish profile image
makeawish in reply to RobertELee

no i was only on 10mg bisoprolol,simvas,and an aspirin,but they had upped the prolol 3 times cos of episodes earlier!

Hello Simon , This is indeed a salutary tale. I have read your previous posts and the absence of an anticoagulant is really bad.I hope this post is read by all who are on aspirin. Sending my good wishes for your quick recovery. Sandra

Tobw profile image
Tobw

Best wishes for a full recovery makeawish.

MammaCass profile image
MammaCass

Sorry to hear this, hope your recovery is speedy. Cass

get well soon and thanks for trying to save others from what has happenned to you

davery profile image
davery

Thanks simon for your advice. The forum is a good source of advice on AF and I am a regular user . I wish you a full recovery .derek

Sorry to hear about your stroke Simon, like everyone else I hope you recover fully and fast - this is a grim reminder of why anti-coagulation is a good idea, even at a 'young' age.

Lis

Sorry to hear this Simon and I strongly support a complaint going in about not previously given anti-coags. AF patients, even possible AF ones, need to be on some sort of blood thinners. I had a drop attack (along with other bazaar symptoms like I could only walk backwards at the time (yes really!) right sided weakness and being unco-ordinated, balance probs etc etc (which I still have)...... 11yrs ago now and it took me half an hour before my brain would function properly to phone for help. I was miles away from home walking my two dogs at the time!.I was taken to hospital and kept in over the weekend, had 2 lumbar punches and other tests....I was told by the consultant on Monday morning I was far too young (46 at the time) to have had a stroke and he wrote on my discharge certificate that it was nothing more than a migraine and to go away and get on with my life.... .Anyway, long story but prior to this attack I was having episodes of palpitations lasting hours at a time and my GP told me it was just stress!. The crux of the matter was I had had a Brain Stem CVA and was told this privately 4 weeks after the event by a Neurologist. BUT as soon as I started the complaint procedure...guess what? ALL of my paperwork was lost by the hospital and I was treated like an idiot and a troublemaker....So even after 11yrs, (which ruined my life in that I lost my job and my home) the Neurologist still refuses to acknowledge 'in writing' my diagnosis he gave me verbally, which my GP has followed and yet my Cardio team agree with 'ME' hoorah! .....I couldn't sue for negligence by the way as I just wasn't well enough and you also have to pay for the insurance up front, which was £25,000.

Interestingly I have just relocated in the UK and recently saw my new GP and on the computer from my notes..... This patient has had a Brain Stem CVA!!!! (bangs head on the wall lol!)

Hope you make a speedy recovery Simon and take care.

in reply to

Wow fairy lights, NHS Has treat you wrotten. My experience with them has not been good either. I lost my job too but managed to sell up before loosing our house. NHS needs a wake up call, let's hope what goes around, comes around. I hope life is better for u now xx

in reply to

Thanks poppyseed, I agree totally about bad treatment but sadly I know I am not alone. It seems that unless you are famous or very rich (because NHS would know you could afford to sue successfully!) out hands are tied :-(. Life is still a struggle as i have been fighting for my employment pension for 8yrs as I need some money to live, but all we seem to do is fight for what is rightly ours....heyho! xx

in reply to

I have been trying to get my pension too, also without success. It's odd the time when you need help you can't get it. I must say though, after having my recent mini stroke the aftercare I am getting compared to other times is very good. Good luck on what u do next xx

in reply to

Well, I am glad to hear you are getting much better after care but sorry you had another mini stroke. Look after yourself. I have taken my complaint to the Ombudsman now so waiting for a decision from their office....keeping fingers and toes crossed! xx

Fussyface profile image
Fussyface

Get well soon, Makeawish, Chris

Offcut profile image
Offcut

I was in severe Taci some years back and did not notice until I had a feeling of a Cricket ball go though my chest while driving. I went to A&E and was 178 they admitted me and I peaked at 218. To be told that I had had a heart attack because my heart was so erratic that my blood was vortexing in my heart but I was not getting any O2 to it so it stopped beating.

The fact that I was on Warfarin was probably why it did not convert to a clot which could have been a whole different story.

I wish you well for the future.

Be Well

I think you are very courageous to inform everyone makeawish, it is a very sad state of affairs when you are not treated seriously at the time of a visit. I had intentions of raising this stroke probability, when I get my 2nd opinion for an EP in Mid June now I will most definitely raise it. I asked my GP how could they check to see if your blood was thick or thin her reply was when you get a blood test? Maybe someone can tell me on this forum what that actually entails.

I thankyou again Makeawish and hope you are managing.

Beancounter profile image
BeancounterVolunteer in reply to

Hi Ultramarine

OK well actually there is no such thing as "thick" or "thin" blood, just anti-coagulated. And there are different methods of being anti-coagulated, for most of us it's warfarin, which is tested via a blood test it's called an INR test (International Normalised Ratio) and if you take 1 to be an average non anticoagulated person then they usually set a target of 2.5. So you will bleed roughly 2.5 times longer than usual if you cut yourself, but more importantly it will assist to prevent any blood clots forming inside you.

The new anti-coagulants do not need any blood tests just taking them is sufficient, they work in a different way but with the same results.

All blood whether anti-coagulated or not is the same "thickness" or viscosity, it makes no difference at all.

Hope this helps

Ian

thanks for your reply ectopic....yes it's absolutely shocking the way NHS carry on. I have seen two other Neurologists, one was fantastic and noted my cognitive problems due to past stroke.....the other I saw only last year because my GP said I had possibly suffered another small stroke, he actually 'shouted' at me seriously! you couldn't make it up...he told me I was suffering from some form of neurological condition where my brain believes there is something wrong with me!!!! that I could never ever have any kind of stroke whilst taking Pradaxa....what bulls*** they talk lol! geez, and these consultants are looking after our welfare.. ....

In 2005 my step-father aged 77 yrs went into hospital after a fall at home, he had been on the floor for 2 days bless him. Meals on wheels found him (he lived 100 miles from me) luckily. He was in very poor condition and wasnt' expected to survive with having got pneumonia, but he made a full recovery. He was then sent to a small 'cottage hospital' for a short time prior to being sent home, where he caught 'chlostridium difficile'...hospital bug! He was sent back to the main hospital where he also developed septicemia within days. The consultants refused to tell me what was wrong with him, despite knowing my frail health state and the fact i could have caught this bug too, I sat with him for 8hrs every day for 5 weeks. I was appalled at his treatment from the nurses, he couldn't even swallow his saliva so he wasn't being fed, so i told the sister to put a feeding tube into him. He had to have his throat cleared manually by the nurses who one actually told me she 'hated doing this job as it made her heave'....I was completely speechless. He sadly died a very painful and long drawn out death and it was only when i got his death certificate that I saw the cause. I didn't know at the time what this diagnosis was so i phoned a Professor in Bacteria and he explained what it meant. I then phoned the police to report mistreatment and refusal to offer the care my father deserved, but they said they couldn't take the report as i was clearly just upset and bereft? I told the funeral company that I wanted a second autopsy done to prove negligence. They came and saw me at my dads house and told me it would be too distressing for me to go through all of this, it was best to get the funeral over and done with and then I could get on with my life. They were basically just assuming I was going over the top with emotion. I then went to see my solicitor who told me to get the hospital to send his notes, but not to tell them it was for a negligence case. I spent £50 on this and the hospital phoned me and asked me what I was going to do with the notes...I lied and said ' oh nothing'. My solicitor told me how much it would cost for the case and insurance and that if I lost, I would end up with nothing, that the hospital would destroy notes to cover their failings. It was all too much for me to deal with as only 2yrs after my stroke, so i didn't pursue it. But i dislike the NHS so much and hopefully one day, somebody will expose their lies and show them up for what they really are!

Sorry this is long, but i've never told anyone before and it feels good to get it off my chest lol!

So Simon, if you can, go for the complaint but very good luck and don't tell them anything.

dedeottie profile image
dedeottie in reply to

This is so sad. I too have a long list of horror stories along with some lovely ones too 're the N.H.S.

I try not to talk about mine as it winds me up all over again!

The saddest one involves my elderly father who has since died. Whilst in hospital for a twisted bowel had a bladder cathetar put in so he wasn't a problem going to the loo all the time as he also had Parkinson's and was unsteady on his feet. This was left in when he went home and a nurse came to change it every three months. We all just assumed it was necessary. Eventually dad got fed up and demanded to see a consultant 're having it removed. The consultant said"It shouldn't have been left in they must have forgotten to take it out!!!" Sadly his muscles had weakened though and he had little control over his bladder. I can't believe they were even sending a nurse to change it every three months. My horror list goes on and on. However I have always found N.H.S. care to be good in emergency life threatening situations. It can only be as good as the people working in it so it's often a lottery. Lots of my family work at varying levels in the N.H.S. and they are so frustrated that uncaring thoughtless individuals let the good guys down.x

in reply to dedeottie

I am sorry to hear about you father and what he had to go through. My step-father had Parkinsons so am aware of the bladder problems but leaving the catheter in that length of time, was absolutely disgraceful. How can anyone forget to take out a catheter, as if your dad didn't have enough to deal with. I dread getting older, I really do, as I can't see things improving within the NHS. Yes the majority of the staff are brilliant but it only takes a bad apple to affect the whole hospital experience sadly. x

dedeottie profile image
dedeottie in reply to

Thanks. By the way I love your profile picture.x

in reply to dedeottie

Thank you :-) x

jeanjeannie50 profile image
jeanjeannie50

Oh no, that sounds awful!!! What a nightmare for you - a total disgrace!

OMG! thats absolutely dreadful of them. That's assault and they should be made aware how you felt about it at least......I am too outspoken now because of the experiences I have had and it does make them think about how they are speaking to their patients I'm sure. I am thinking of writing a book lol! Seriously :-)

Yes, I couldn't agree more. Don't know who they think they are treating some patients the way they do. Perhaps we should wear hidden cameras to prove our point, then they cannot deny it. And yes, they are very quick to use the mentally ill route if you should dare challenge them. My step-father was a scientist and far more qualified than some of these consultants, I only wish he were still here as he would know what to do.

CDreamer profile image
CDreamer

You have a right to have a copy of your records there should be no need for bailiffs. I ensure I am sent copies of all correspondence between hospital, specialist and GP. Letters were missing from my file so I smiled sweetly and just produced copies for them so they couldn't say they didn't know, don't allow any wiggle room. When I complained to the consultant he blamed it all on the admin which could be the reason but it is not an excuse. Those are terrible stories.

Loquitir profile image
Loquitir

They should have poster of your story up on the waiting room of every GP practice and walk pulse check facility for every patient to have a routine 30 second handheld ECG available any time at the practice.

Thanks Beancounter, no wonder she looked taken aback when I asked her. I agree with a video or poster not only to remind patients but nurses and doctors also that an explanation of anti-coagulation is worth a mention for patients with AF. Of course it depends on the surgery.

Ang3lc4ts profile image
Ang3lc4ts

I have just read all the posts and yours made me cry, makeawish. You poor soul. And everyone else who has had such dreadful experiences with the NHS.

I live in Truro and there have been some horror stories here as well. But, I have to speak as I find, I have been in and out of the hospital here so many times, not only with AF but osteoporosis and I have been treated with the utmost care, courtesy and excellent treatment. Just thought I would let you know how lucky I have been.

Di

sann profile image
sann

Hi there Simon thanks for the post and I do hope you will recover quickly,guess DSL e doctors would do well to read it,take care Sann

Teignfisher profile image
Teignfisher

As someone who also recently had a stroke I wish you a very speedy and full recovery

You may also like...

STROKE

yesterday had unlocked his phone, was smiling and joking about his memory, rang his sister and last...

Annual risk increase for stroke= inevitable stroke?

yesterday it was mentioned that the annual risk of stroke goes up. I have tried looking for posts...

Stroke prevention in AF

fifteen minutes somebody in UK had an AF related stroke. Originally I wrote every fifteen seconds...

Stroke Prevention Day

AF as part of your stroke care. You can find out more about managing your risk of stroke with AF....

Stroke v Bleed risk.

great results in recovery from serious thrombotic strokes. What it did say is that sucess falls by...