Light at the end of the long tunnel - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Light at the end of the long tunnel

Budleighgeorge profile image

Hi all .i pray that everyone is feeling well. i have not posted anything lately.. as i am still in hospital since the 30 of august. i am now looking down the long tunnel and i can see a light shine in .which has made me happy . but the doctors are having trouble getting my inr within my range of 3-4 .. i have been taking 10 mgs of warfarin a day now for 3weeks and my inr today is only 1.6 it keeps on dropping at a fast rate ..would it help if the doctors stopped my fondaparinux injections that i have twice a day of 7.5 mgs or should i try someother form of meds .. i have no pauses now in both of my legs.which are badly clotted. my ivc fitler is blocked with a mass of clots. which i am being refered to steve black at st thomas hospital were i see professor beverly hunt and my pes in my lungs have more damage to my body tissues..i am hoping to have my ivc filter removed soon .has anyone else had a ivc fiter removed ?????... all my best wish to all

7 Replies
MaryF profile image

Hello you brave trooper, thank you for your update, I am so pleased you are being referred to Professor Hunt at St T's, they will help you a great deal I am sure, do keep checking in and have a bit of support of this forum whenever you feel like it. In the main time keep as well as possible, sending you very good wishes for recovery. MaryF

Budleighgeorge profile image
Budleighgeorge in reply to MaryF

Thank you for your kind reply.. i wil keep all updated

Oh dear I hope you will get some help and advice from St T''s that will help you on the road to recovery. Thinking of you xx

Thank you x

So sorry you're going through all of this. Try to keep your spirits up, are you able to read, knit, journal, have friends and family come to visit you ... ? Wishing you all the best. Anita

Good luck. As you know, our thoughts are with you.


I wish u the best and hope that all will be well at the end keep a positive mind and u will be fine.

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