Sticky Blood-Hughes Syndrome Support

My brain (or lack)

I've had a bad few weeks with brain fog. I saw both Haematologist and Rheumy today and explained that I had a small surgery about 3 weeks ago so had to stop the Rivaroxaban 48hours before and start 12 hours after. (I had a couple of Clexane shots but had to stop them on day of surgery) I keep not finishing sentences, and I watched a recorded program on TV and my husband asked me why I was watching it again. I told him I hadn't seen it and he said we both watched it a couple of days ago! We had a bit of an argument but I really couldn't remember even bits of it.

Haematologist asked what I was doing later in the day and I told him I had an appointment with Dr "Whats his face" (couldn't remember Rheumy's name!) He had a chuckle and filled in the blanks as he knew who I was talking about. I was offered an MRI but it wouldn't really change the course of treatment-so I declined.

My Rheumy looked at last bloods and said if I ever have to have surgery again I'd need to be in hospital, bridged by IV heparin that would be stopped 4 hours before and would I please make sure I don't miss any doses of Rivaroxaban and aspirin! (it's the one med I do not forget!)

It appears my sticky blood is here to stay........

I hope my mind comes back by next week as I'm flying to Hong Kong :) My Rheumy said he will quiz me about the trip when I see him next!

8 Replies


Something is wrong with your anticoagulation or this has to do with the op 3 months ago and stopping of the Rivaroxaban.

I do not know why you do not take Warfarin (I thought you were on an INR between 3.0 - 4.0).

You shall absolutely not be satisfied with this state of things and sticky blood is not here to stay. No way!

Talk with your Specialist about anticoagulation especially if you are going on a long flight to Hong Kong! How many hours from the US?

Best wishes from Kerstin in Stockholm

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The operation was 3 weeks (not 3 months) ago! Also I'm in Australia not US :) However it is a 9 hour flight (relatively short vs the 24+ hours to Europe) I started on Warfarin when I was first diagnosed (very unstable INR's) then Clexane got a big DVT after about 12 months and have been on Rivaroxaban and Aspirin for nearly 2 years now. Its worked very well for me up to now but it does make me aware of how sensitive I must be, to be properly anticoagulated.

I have a week before I fly out-my compression stockings are clean and waiting and my meds are definitely going with me and not in my luggage!

Thanks for your great work ( and Mary's) on the forum - I always get some great info from here.


Thanks! I always like your infos also. Australia that was something else!

Take good care of yourself now before you fly away.



HI, I am sorry you are feeling so off kilter, it is very important that your anticoagulation performing well before your long flight! I hope things improve over time, but do get in touch with your medical team again if they do not, this is very important. MaryF

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If I were me I would be having a conversation with your Dr about how you are before your trip and about if you need to be adjusting medication during your flight. As you know anyone on warfarin or LMWH would be adding a extra heparin shot 6 hours into their flight on a 9 hour flight so I can't believe that on your medication regime you don't have to make an adjustment either.


Sorry you're having such a yucky time of it. xx

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Thanks! I *think* It's getting better. There's still a few holes in my memory but I'm hope I'm back to *normal* (for me at least!) in the next few days.


Thanks for letting us know your experience. I may be having sinus surgery and am taking apixaban. I have been wondering how that would be done.


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