any experience of strokes ?

beccam

~daisy~ wrote: »

thx beccam - trouble is hes still on a horrendous asessement unit / halfway house type thing - that is so busy that patients arent getting the proper care they need
sort of place where you read about ppl being left on trolleys in a corridor for 6 hours
whilst i understand about ppl in bed developing clots i thought because they were so aggressive on the stroke unit and having him up and around so quickly this wouldnt be the case but yes i guess its a consideration
im certainly no doctor just want to try and arm myself with enough laymans knowledge so i can ask the questions i need to to make sure cliff is getting ALL the tests and treatment that can and will help him

all opinions welcome xx

Eeek, the assesment wards are a bit of a nightmare and not much you can do until a bed becomes available somewhere else or they send him home.

The stroke unit definately help prevent clots by getting people up and about quick smart although there may have already been a little bit broken off from the original clot or like I say just him being normally so fit and healthy tends to mean a higher haemoglobin so blood more likely to clot.
All things to be discussed with docs and to be honest they may never be able to give you a definate answer for why this has happened.

His routine bloods should show anything very worrying (like blood disorders linked to cancer etc), family history obviously plays a big part too....clots are more common in the legs etc in younger people, maybe he was just "unlucky" that his presented as a stroke.

Things I would ask is about what tests they have done, what they intend to do to rule out any underlying issues. Scans to rule out any other clots that may be lurking, intended length of treatment with warfarin and heparin...what is their goal/target.
Enquire who is "looking after him" at the moment as in is it still under stroke care or does haemotology take over now (sometimes when left in assessment unit it's just under general medicine rather than specialist care)

Like I say it is not an uncommon problem to have another clot somewhere and hopefully it will be treated quickly and resolved then for good.

~daisy~_2

few things we do already know - his care at mo is under general medicine doctor on asessement unit but should transfer to a specialist doctor tomorrow morning - am hoping and assuming its hematology - stroke unit has no input as his admittance wasnt due to a stroke
stroke unit hasnt totally discharged him - they are going to be treating him as an out patient - how well 2 teams work together in cases like this - i have no idea ?
general medicine doc said warfarin treatment could be up to 6 months but i guess that will depend on any underlying reason for this happening possibly ??
will def ask whether CT scan was just chest or full body and chances of more clots - tho if any were hopefully be be addressed by all the anti coagulants he is already on ?

beccam

Re clots and treatment......yes warfarin etc should be treating any clots no matter where they are. My thoughts (without worrying you) is that worst case scenario, he has some strange underlying "thick blood" condition (should have been picked up by now with blood tests) then the anticoags may not work effectively to treat them.
This is only in my head as I know a girl who has been having these problems with recurrent clots on lung/legs/abdomen BUT THIS IS VERY VERY RARE!!!

Personally I would probably like a haematology referral even just for assessment incase they spot anything that medical team miss and to give you peace of mind, plus they should really be doing follow up on this when he is discharged.

If he is going to be in for a bit then may be worthwhile letting stroke team know so they can try and continue with rehab (if this isn't already happening).

Sorry it's so hard to try and think of everything when I can't look at his notes!!

~daisy~_2

stroke team were called to bed next to his this morning so popped there heads in to say hi - his notes were still on stroke unit and need to be returned there so questions were asked when they were requested
they aslo said his stroke rehab could continue wherever he was in hospital if needed - but at the time was on hold until this was diagnosed
will add haematology refferal to list of questions - really thx so much for taking time to answer my posts i do appreciate it xx

BRIANCARSON

Hi Daisy - I know how you both feel as I survived two strokes/heart attacks ten years apart - I was paralyzed on my left hand side on both occasion but over time did recover although it takes longer to unscramble the brain. { my memory was deeply affected so could not place events in their correct order }

Just to keep me on my toes I am currently being treated for prostate cancer although the NHS is now far better than it used to be.

I live on my own so at least your husband is lucky that he has a caring wife to look after him.

I know its a long process and I know that the future may be uncertain but there is a lot of people like me who if you ran into in the street you would not have a clue that we survived a stroke .

All it takes is time and taking each day as it comes.

my best wishes to the both of you.

brian

shegar

~daisy~ wrote: »

because my hub is going t be getting paid as normal - thankfully - i suspect i wont be entitled to anything - he earns around 50k ??

will they issue blue badges for stuff that may only be temporary ?

Hi Glad things are coming along nicely , Well thats so good that you dont need to rely on benefits to get through. When my husband had his stroke he was self employed we were absolutely weeks before I got any money come through , and he was in a hospital 160 mile round trip for me to travel for 10 months. !
! Being self employed youve not got a employer to pay you SSP.

LoopyLinz

Hi Daisy

Sorry I couldnt just read and run. Not too sure how hepful what I will have to say will be but hopefully it might give you some perspective from your kids point of view.

I was 11 when my daddy had his first stroke and I think the scariest part of it all was not really knowing what was going on. I know my mum tried to protect us from it but looking back it actually just made things worse. I remember imagining the worst possible cases and resorting to the internet..........which we know is a big no no cause generally you only see worst case scenario! Fast forward 10 years and my daddy had a second stroke. This time was very different, not only was I older but I was also there when it happened. My mum when to pieces and my sensible kicked in. I was able to follow the instructions on the phone, etc unti the ambulance arrived. On arrival at the hospital it seemed to be me who took charge with trying to understand/get to grips with what was going on. When it was explained to me what a stroke was, what caused it and how it was treated both short and long term it seemed no where near as scary.

I also found that one thing that definately helped was getting invoved in my daddys rehabilitation. I was there with his physio, speech therapist, occupational therapist and I was able to 'help' I guess. It made me feel like I was doing something worth while and stopped me from feeling so useless.

My daddy was badly effected down his left side, had no speech, no mobility and a shocking memory. I will never forget that feeling of my daddy saying his very first word and knowing that I had somehow helped gave me that little bit of hope that my daddy would be ok.

Fast forward once again 14 months exactly and my daddy walked me down the ailse. No walking stick no nothing! Its hard to tell who was prouder that day.........him or me!

Dont get me wrong there have been hard days and frustrating days and days I fet like screaming but every little milestone was worth that fustration 10 times over.

I guess what Im trying to say is that you know your children best, you know how they are likely to react to the truth and being kept involved. For me it was the best thing ever. My daddy also said that in a way it helped him to feel more 'normal' because we werent tip toeing around him.

Sorry this has turned into the longest post I have possibly ever made!

Linz xox

~daisy~_2

thx everyone for all your posts and experiences - it all really helps xxx

FerretloverUK

hiya. I totally sympathise with you. My father had a stroke in my car.

When i took him to the hospital the staff were awful.

To cut a long story short, WE done everything for him and Im sure that why he recovered as much as he did.

The hardest thing to cope with was the depression & frustration he got (common in Strokes) & not knowing why he felt that way. Luckily, he doesnt feel like that often but you must pepare yourself for a long recovery and persuation!

I wish you all the best & keep us updated xxx

mercedes125

My grandmother had a stroke on friday she had been laid on the floor 9hrs after having it before i had found her it has left her with no feeling in left arm and leg slight slurred speech but otherwise shes aware of everything remembers everything. We dont know of any of her scan results but we have been asked to go to the hospital on thursday to a meeting with the doctor nurses and ocupational therapist has any one else had to do this its just not knowing what to expect. I would imagine because of her age she might no recover from this. She was a fit active 87yr old before this so i cant imagine how shee feels.