Sticky Blood-Hughes Syndrome Support
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Stroke ......Strewth!!!

Just read a statistic on an NHS Hospital document that said that the risk of dying from a stroke at one year was 30% for first ever stroke.

Given that its my first anniversary of my stroke last weekend I'm not sure if I should be celebrating or hibernating in case I'm one of the 30%!!!

You would have thought wouldn't you that the longer you went from the event the better the odds got but according to those same stats the risk was lower after 7 days at 12% and steadily rose to 19% at one month.

Im thoroughly depressed now!!

14 Replies


I want to say I must be the luckiest person in the world. I had 4 strokes from 1995 to 1999. I only lost the vision in my right eye with the 1st one, which was from a clot. The other 3 where all bleeds, and other than being in ICU at UNC and 2 other times here in Burlington, I feel like I am the LUCKIEST person!!!


I too am lucky surviving an arterial clot and bleed at the back of the head. In short 10 days on life support (the first 5 in a coma), 4 weeks quadruplegic, and walked out of rehab 5 weeks later. Post op to the first clot I added a large DVT (ankle to knee) and a PE whilst in ICU.

my story is at

that was all 12 and a half years ago.



hi lucky,

If you are happy can i copy your story into a bog with the link you have placed as some members cannot access link?

thank you



Don't forget there are degrees of stroke. You have had a stroke, but are still capable of logging onto here and writing about it. My mother had a stroke just over 7 years ago. I would gladly have seen her die from it rather than her suffer all these years of lying on a bed in a nursing home with a bag for her wee, a nappy for number twos, and fed through a tube. She spends every day just lying there gazing vaguely at a television screen. When she had her stroke, she was given five years at the most. Most people who suffer strokes that make them doubly incontinent die much sooner. It's a bloody miserable situation.

Celebrate your life and live it!

1 like

Celebrate, you are stil here and probably on treatment that will stop you having another.

Don't foget there is 70% that are ok ,Try and look on the bright side and live and enjoy everyday as it comes

Karen xxx


Don't worry Im not really depressed! In fact Ive just spent the morning in a meeting at my local Hospital with the head of the Pathology services and and Ambulatory Care to discuss the state of the Hospitals anticoagulation Clinic. This is despite the fact that I am no longer on warfarin.

I made a complaint to the Hospitals CEO due the awful clinic services and then was invited to the meeting. They are going to look at a lot of what I said including self monitoring. I think they were surprised with the stats I took along with me including the fact that when a patient falls below 65% of their therapeutic range the benefits of their warfarin treatment is abolished.

Also time in the TTR is important and most clinics keep their patients there between 60 - 80% of the time. However if they fall below 60% they are not offering their patients a therapeutic benefit. They could not give me the the stats for their clinic of what the number of patients they have that are kept in range something that they said was a valid point and they needed to know.

I am promised a meeting in two months to tell me what improvements have taken place and what plans are in motion for the future. Hopefully I have at least kick started something!!



Please can you let me have a copy of those stroke stats? I am discussing the possibility of a stroke campaign for Hughes with the trustees shortly and would like to have as much info as possible.

Our wonderful volunteer researcher has looked into all the NICE guidelines, Cochrane library and NHS clinical pathways and nowhere can she find any testing or looking for causes being mentioned.

We would like to see aPL automatically tested for in any stroke and your stats would give more gravitas to the argument.

Glad you're celebrating being alive :) x


No problem. I will gather up as much as i can and email you the links from the references I used today. Surprised what I found once I got stuck in!


I too have survived - its nearly 2 years since I had 6 TIAs and a huge clot -and although exhausted I am alive and ejoying life. However to Hilda G - you are so right about your poor mum - my mum died of cancer of the brain and we wouldn't have let our dog life like she had to - no dignity at all - so my sympathy go to you and your mum.


Hey I had a stroke and a heart attack.

If you can reason and express yourself, you are more than blessed cause you are alive.

Stroke gave me a road to recovery that I never would have known and another perception on life

Learn to be yourself


I am - the problem is my family are not much liking it! Its the saying NO bit they are having a problem with, ha ha ha!! ;-)


Hi HP we all are the problem lol sorry to cast more doom and gloom i had 2 strokes and was on basic blood thinners first in 97 then second one in 08 it seams it can follow you but as i was told i had a very stressful job and life was not its happies when i had my second stroke in 08 and i had not had a very health life style so i do feel that those coupled with a flare up just tip me over. They do say after a life altering event you look at things diffrently well that is true in part as the damage done by my second stroke changed my life beyond all recognition it will either make you stron or break you and while we have people on here fighting the fight and charties who will research and fund support who am i to give up if other are not going to.



Very True Paddy. I knew that I was never going to give up after mine which was why I chased the answers as to why I had the stroke in the first place. I don't take "we don't know" very well!

Like you I was put on basic blood thinners but something was just telling me it was wrong and I wanted more answers. Thank goodness I was persistent and didn't give up and probably more importantly found the right person i.e. Prof Hughes who listens to you above all else. His dx has probably saved my life as he said I would have had another stroke which would probably have killed me.

Lucky1 I think of you often actually. Your story gives me inspiration.

Hilda I am so sorry about your mum, I am thinking of you both. My mum had two types of bowel cancer. She cured one and then had another much more fast aggressive type. She fought every day even when I told her it was ok and she could stop as I felt that somehow she was doing it for me. She told me in a very weak voice but with intense passion in her eyes that she intended to keep fighting every day and she was true to her word. Refusing to use anything but a toilet until the last two days and always making sure she looked clean and presentable. Her dignity was something that never left her and taught me more than I can say.

So in some ways what happens reminds you life is short and precious, you need to do what is important to you while you can.


I have ben mulling over tis for the last few days be intersting to see what the demographics were in relation to age, prior illness etc etc and worth rememebring that 70% survived after the first year. Stats can be read ina variety of ways, as we know from politicians.

As a by the by my first stroke was 16 years age, so guess I am OK


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