ET & Long Haul Flights: Hello Everyone - I wonder... - MPN Voice

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ET & Long Haul Flights

cavery
cavery

Hello Everyone - I wonder if you could let me know your experiences & tips when flying long distance. I'm going to be seeing my haematologist in the next month for my routine appointment and I'll discuss this with him then, but thought I'd also tap into all your knowledge. I'm 43 and have ET. Currently I'm not on any medication/treatment other than aspirin. I'm hoping to travel to Australia next year to visit family. I used to travel a lot long haul so I'm used to ensuring I stay hydrated, walk around as much as possible and wherever possible break the trip up by having over night stays rather than flying the full distance all in one go. What have all your experiences been like? I understand that my consultant may recommend some type of injection an hour before the flight, has anyone else had to do something similar? I'd be really grateful if you could share with me any of your experiences in travelling. Very many thanks. Caroline

14 Replies
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Mazcd
MazcdAdministrator

Hello Caroline, have a look at the information on our website, it might give you a few hints and tips

mpnvoice.org.uk/living-with...

Maz

cavery
cavery in reply to Mazcd

Many thanks Maz. I should probably have done a bit more research on the forum before hitting the "send" button, sorry about that!! Thanks again.

I flew earlier this year from Australia to the UK and back again. 53yo, ET JAK2 and just on aspirin twice a week at the time. I took aspirin before the flight even if it wasn't due that day and did the usual moving ankles etc as much as possible and drank lots of water. I wasn't seeing a haemo at the time so didn't get any advice there but I asked my GP who said I should be fine and I was. :) The new flights between Perth and Manchester are great as they split the time almost in half so something like 11 hours from Perth to Doha or Dubai and then another 10 to Manchester. You usually can get around a couple of hour stopover - time to have a good stretch and walk around etc.

cavery
cavery in reply to Merry6

That's brilliant many thanks. I'll look into flights from Manchester. All the best.

I have art Jak2+ On aspirin and hydroxy . On long haul flights I had to inject. Just to be in safe side . It is not as bad as it sounds . Good luck

I've got ET and PV and on anagrelide. I went to America in 2008 and just wore compression stockings and walked about a lot, it was fine. Jealous of you going to Australia :-)

cavery
cavery in reply to Hmmm79

Many thanks. I can actually get some stockings from my hospital, they actually measure you for them so that you get a better fit, sounds brilliant. Yes, it should be a good trip. I lived there previously so I've done a lot of the tourist stuff already. I can't wait to see my family though. Hope that you're keeping well.

I have ET JAK2 and before I was on Pegasus I flew to Mexico twice. I take clopidogrel not aspirin. I wore flight socks and took pycnogenol, which I find really good for air travel. I was absolutely fine. Lucky you, going to Australia, my son lives in Sydney and I haven’t been for a few years, I love it out there!

cavery
cavery in reply to tessa46

Many thanks for your reply. I'm looking forward to the trip. It's hard when family are so far apart...thank goodness for Skype. All the best. Caroline

Hi, I'm only on aspirin. For long haul flights my doctor prescribes me a blood thinning injection x

Hi Caroline. We were given Fragmin 500mgs to inject on morning of flight both ways. Injection just below skin. Needle doesnt hurt but solution stings a little as it goes in. I am trained to give injections though so not sure if this made a difference. Enjoy your holiday. Good luck. Joy

Hi Caroline. Just remembered prior to his late 50s we travelled long haul twice annually and were never given any injections. Just used common sense flight socks, leg exercises and hydration. Joy

I’ve flown long haul many times since being diagnosed with ET 14 years ago. In addition to all the common sense measures you have mentioned I used Tinzaparin injections prescribed by my GP to reduce the risk of DVT before my platelets were reduced.

Now I’m on Pegasys and my platelets are back in normal range I don’t need the Tinzaparin any more but still take all the other precautions.

Enjoy Oz..!

Andy

Hi Caroline

I've got ET too. We travel regularly and I've not noticed and difference in my experience of jet-lag except that my legs ache a bit more than usual on a long-haul flight. I'm on 1gm hydra - I make sure I pack enough for the trip and also put the same amount in my husband's luggage in case mine gets lost or stolen! The other point that might interest you is that it hasn't increased my Travel Insurance ( with HSBC).

Happy trails!

Lesley

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