Sticky Blood-Hughes Syndrome Support

getting info

I have just come out of hospital again and have been really shocked by wwhat i was told by the consultant on call. I thought i had 1 clot on my left hand side but was told i have had 'multiple bilateral emboli' for several months. I am terrified that im sitting here waiting for the clot that kills me even though im on warfrin and clexane because my inr is low. What i was wonderling whether any one else has had this sort of half truth and no truth at all and what can be done about it. I feel so confused and let down and feel that we have enough to cope with without being unimformed about our on bodies. In the consultants defense he was quite shocked that i hadnt been told. Sorry for the tirade but i feel so vunrable right now margaret

4 Replies

Hello, not a tirade at all, how awful, I hope the team around you will work swiftly to sort this, with yourself at the centre of any communication going on. Please let us know by update, how things are going. I am sure others will come on now. I have never had PE, just legs! Mary F xxx


You mention being on warafarin but not what level your inr is. What is the theraputic level you should be at? If this is not what it should be then the team should be getting you to the correct level. I dont know where doctors have the notion that because you are on warfarin you will not clot.

Warfarin is a preventative not a cure. It shows how little the doctors understand of a 'clotting' disorder.

Maybe you have an intolerance to warfarin which then means you need an alternative which would be heparin (12 hours). This needs to be injected regularly as it has a much shorter half life than warfarin (72 hours)

lucky1 (Peter)


My theraputic level is 2.5 - 3.5 but at the moment my inr is hovering about 1,7. I am on life long warfrin and have clexane if my inr drops below 2.5. I am going to the doctors on friday and have copied all the leaflets the foundation sent me and am going to show her that my inr range should be higher. To be fair my inr has never really become stable since i had the origional PE last march. Its just so frustrating when you try to tell doctors something about this condition and they dont hear you.


The very best of luck with this, you sound very up beat, up to date and very organized. Let us know how it goes. Mary F


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