To Fly or Not To Fly: Hi everyone and I... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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To Fly or Not To Fly

JimmyandPaddy
JimmyandPaddy

Hi everyone and I hope you are all keeping as well as possible. Just a quick question . . . we have been lucky enough to have been invited to a wedding in the Philippines - as my partner has APS (currently on warfarin) what is the best advice on flying - as it will take about 17 in total to get to the island that we need to. He has never experienced clots since he was diagnosed but I am just worried about the long haul. Thanks so much in anticipation :-)

10 Replies
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I fly to Australia most years and am on warfarin amongst other tablets and find if I balance the time difference ok then there are no issues. I do self test and self medicate my dose levels so your partner will at least need to be self testing and have a practice nurse or haematologist to support the doses via email or phone. I tend to take a half dose at the UK time that I normally take my tablets and the other half on the foreign time. Although be careful if it’s other drugs as I forgot the time difference once took my tablets about an hour before landing at Dubai and was out of it and not at all compus mentus for most of the time!

Nearly everywhere I fly is long haul! I was on Rivaroxaban last flight a year ago (27hours each way) but currently on Clexane twice daily. Can't fly anywhere right now due to a seizure diagnosis :( but I would imagine that if your partner is stable a set of compression stockings wouldn't go astray. if you self test maybe a couple of LMWH syringes?

I fly on warfarin every year 2-3 times. I was worried too but Dr Beverley Hunt a top blood specialist said being on warfarin I’m the safest person on the plane. I keep hydrated and do move as much as I can get up once an hour and do foot excersises sitting down. Not quite done a 11 hour flight but since flying on warfarin nothing has happened yet flying undiagnosed it triggers many clots .

Would it be possible to cut the journey by having a stop over somewhere ? I only dare fly upto 7hrs but I wear compression stockings and drink plenty of water plus walk around a bit.I did ask about long haul as would like to visit friends again in New Zealand and was told would be ok and no other injections would be needed but would rather not risk it.

After a bad experience flying across the pond, I now always come equipped with a signed letter from my doctor explaining my condition and need for leg room. I also try to have an aisle seat so I can get up and walk back and forth without disturbing fellow travelers.

As my son says and have no idea where he got it from, prior preparation prevents p**s poor performance!

So, go ready prepared for flight, compression stockings, drink plenty of water, get an aisle seat, move around a bit also keep watch on home time so can take meds when needed adjust it little by little.

Go and have a good time life is too full of ifs and buts.

J

You have got very good answers I think.

17 hours is a long flight. Also back only some days afterwards?

The most important thing is that he asks his Specialist of APS what he thinks.

He or she knows he is on Warfarin and those problems and how many lung/heart issues he has got from his APS etc etc. Quite different symptoms we get from this illness and how severe the illness is in each case.

MaryF
MaryFAdministrator

Your partner should be fine, but do seek medical advice off your consultant and GP and ask about surgical stockings being fitted if you feel that would be a good thing? MaryF

Great question... My entire family is in the Philippines my mother wants me to see my grandma while she is still alive and I havent gone because I'm prone to clots... I had my first clot when I was 16 when I was diagnosed I'm now 33.. the last time I was on a plane it was for 3 hours and I had terrible vertigo for days.. the length of the flight just concerns me.. no matter how high my INR or controlled it might be..

Thank you all so much for your replies - much appreciated 😃😃

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