flying

[kimmi9]

hi everyone i want to go on holiday this summer but am unsure where to go, my point is is it safe to fly with APS or should i stay on the ground or maybe water?? i would appreciate any feedback thanks kim x x

[fussyfoodie]

Hello Kim

Being recently diagnosied with Hughes I have asked a couple of Dr's this.

None were concerned other than following normal guidelines.

Flight socks, flight excercises, drink lots and wall about when you can.

With this in mind I booked a trip and have 4 flights on the cards in March. We are going to Guatemala via New York. I did this so we can break the trip up a bit and reduce the length of the flight times.

Also intersted in others experience of flying.

Miranda

[kimmi9]

oh miranda that sounds great i hope that you have a good time and thank you for your advice kim x x

[Hidden]

I was told by doctors that for me, 4 hrs was a cut off as at the time i wasnt on any medication, despite my diagnosis. It was suggested under a four hour flight i should take aspirin in the lead up to flight day and for the day after (applies outbound and return) and for over four hours i would be prescribed heparin. All other flight guidelines of water, exercise and flight socks apply.

The only time this caused a problem for me was when we flew to New York which sadly was just after the 9/11 attack and i was very nearly stopped from flying home as i had asked the staff at the gate where i should put my sealed injection and showed them the letter written by my GP confirming that i would need the heparin during the flight. Everyone freaked out which i could understand (in the circumstances) but stressed me out with worry about how i was going to get home. I would suggest that if you do need heparin and can time your injections outside of flight times then that might be more helpful and lesd hassle for you!

[tim47]

How long is your intended flight?

I have been in touch with the Civil,Aviation Authority over related issues I have when flying, mainly the problem with seat allocation because of my height and predisposition to DVTs and the fact that most airlines, as soon as I mention anything about illness/disability they opt for the easy way out and refuse me most of the appropriate seats that are by emergency exits. In the course of our 'debate' they referred to the consensus from studies that under four hours it s not an issue. I have asked them if any Hughes patients were in the studies and they haven't answered that one.

I have had a stroke in an aircraft coming from Athens to UK. The crew thought I was drunk and didn't help at all despite my wife's please.. A British Airways stewardess spotted something was wrong at Heathrow and rendered assistance.

I fly but hate the hassle, even under four hours, as I insist on a seat to accommodate my height. I never touch alcohol before or during the flight, drink lots of water, exercise my feet and legs when sitting down and often stroll about. I usually tell them why I need to stroll so they don't think I'm plotting a take over! I now carry heparin for injection, along with a ton of medication that I will not trust to the hold.

I honestly think my real issue is only the complication of getting an appropriate seat for my height, if you are comfortable and not bent double and are sensible, short haul shouldn't be a great problem. Family with similar clotting issues but not Hughes- can't recall the name- mutated something gene, are advised to have a heparin injection for long haul which they take frequently and have no issues.

I don't use suppression socks but was advise by my nurse to wear certain tights. Not wishing to be found wearing them if I had a pull at customers, I went to the loo once we were airborne to put them on and apparently nearly caused a riot amongst those waiting for ages to use the loo who had no idea of the struggle I was having inside

[justlymostly]

Last year I did a six week tour of Australia consisting of 11 flights in total. I wore flight socks on all flights and had my INR checked 3 days before the main long haul flight to get there(to allow for any adjustments to kick in) , twice while I was there and 3 days before I came home again. My INR was always 3 or above and thankfully I had no problems related to Hughes. Just sciatica from falling asleep and trapping a nerve!

[k7pbx]

I fly weekly for work. Out and back. Usually west to east coast of the US. They keep the cabin pressurized to 10K feet. That is

100K miles per year flying. All following 5 strokes. I do walk the isle often.

Maybe that has caused me being so tired.

Take ear plugs for the engine and children noise.

[kimmi9]

thank you everone for all of your story`s and advice i now feel alot easier about flying and look forward to going away. Thanks again kim x x