Sticky Blood-Hughes Syndrome Support
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Unstable to travel

My cousin is getting married in Thailand and I emailed the specialist nurse last week for advice re travelling. She rang me today to say that they had had a meeting about me and they are not happy for me to travel, she said I am too unstable. She also said I have a son, a husband and am still working and do I want to jeopardise these things!

In addition to this yesterday I had a hypo followed by another do! Confused, didn't know where I was loss of strength to right side of body (blood sugars where normal by this time). Slept for 3 hours afterwards.

Oh I feel so good.

10 Replies

Hi there, you sound like you have had quite a difficult time, I hope you feel a little better soon, and perhaps can have a chat with your consultant/GP as well as the nurse to clarify all positions. Best Wishes Mary F x


I leave in a few weeks for a wedding in Australia. Previously I have asked things of the nurse and have been given both misleading & dangerous information (including the OK for an injection which my specialist said could have killed me).

So ask your specialist and if he says yes, then make sure that you get it in writing and also ensure that you give a copy to your GP. Just in case you have to claim on your travel insurance while you are away.

I hope that you are 'cleared for take off' !


Hi Annie

I think err on the side of caution, speak to consultant and Gp, could be that added protection such as heparin injections to take with you, having letters from consultant n Gp etc with you. Check with insurer etc.

I did have to cancel a holiday booking after a PE 4 years ago! better safe than sorry was my gp's words. I have flown since and been absolutely fine!!

Arm yourself with information and i hope you can go and have a great time..

Sorry if rambling but brain fog awful today.

Take care gentle hugs love sheena xxxxxxx :-) :-) :-)


Thanks for the comments everyone. The nurse already spoke with my specialist (prof emery) she also spoke to the Dr who works for him and who saw me last week in clinic. The three of them together said they weren't happy it wasn't just the nurse, unfortunately.

I have decided to err on the side of caution and not go, it would have pushed us financially to go as well. They are having a party in the UK when they get back so I can go to that.

I am hoping that it was just the length of flight that made them say no. As we're not gong to Thailand now we would like a week somewhere in mainland Europe in the summer.

Have a good day everyone


Hi annie

Always err on the side of caution, I am sure one of the things we have all learnt, is nothing is guaranteed in this life - so enjoy every thing you can, but also taking into account our condition - Keep positive and keep well





Hi hon

Short haul flight to Europe should be ok. Again check to be safe. Sorry gonna miss wedding in Thailand but sure cousin will understand.

My fella and I hope to fly to the US n meet up with friends inside and out of our Hughes family, when health n wealth allow, hopefully new anticoagulants n other meds will come along n make long haul flights safer for us sludge bloods!!!

As you say on the plus side finances May allow a great holiday closer and a crackin wedding present!!

Take care gentle hugs love sheena xxxxx :-) :-) :-)


hi i fly ,carnt drink alcohol 12 hrs before flight, then i inject fragmin 5000 1 hr before i get on plane even if im in range


Why can't you drink alcohol 12 hours before the flight Roy?


dehydration ,ment to be bad for clots, so they say


St Thomas's say I can fly, America probably if we can afford it now I have given up working.

I feel reasured that I have my own machine now to test my INR and if low I am to have a Clexane injection, would rather have one anyway.

not sure how much yet.

This year we are going on a cruise, as I was a bit frightened to fly. I think I will be taking the clexane too as I will probably be very sick.

I think I would have felt better on holiday if I had drunk less alcohol. Not that I was drunk or anything but spent most of the time drinking cocktails mmmmmm

and with the Sun probably got a bit dehydrated

Love Karen

Enjoy xx


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