Hi
I was diagnosed with lymphodema last year, 18mths after surgery and after I had cut my affected side hand.
It is considered mild at 7% and doesn’t seem to have got any worse. I was prescribed a sleeve and guauntlet for my hand which I found very uncomfotable and I was very conscious that people would know why I was wearing it, and so I didn’t wear it much.
My question is about flying. We are going to Mexico and I believe the flight is about 9 hours. Should I wear my sleeve for some or all of this flight? And what about over there, do I need it for the hot and humid weather, could my arm swell up?
Feeling a bit anxious about this.
Thanks
Irene
Hi Irene
I have lymphodema at around 6% and detest my sleeve so only wear it for gardening. I flew to Miami in January and was advised by my BCN to put it on an hour or so before take off, keep it on for the whole flight and for an hour or two after landing. This worked for me. Apparently we can get huge percentage increases if we dont wear it.
Have a fab trip, best wishes Judy x
Hi
Sounds like you had good advice from your bcn there, Judy. It’s fairly generally recognised that if you have lymphoedema, you should wear your sleeve/glove for the duration of the flight and for a little while afterwards, too.
Irene, as I understand it, much in the same way that some people get puffy ankles on long flights lymphoedema can also worsen (or even triggered), due to the reduced cabin pressure inside the aircraft. I always also try to take a small cushion or similar to make my own arms more comfortable. I find the armrests painful to use on their own. I think the other precautions are basically the same as for ‘economy class syndrome’, drink plenty of non-acoholic fluids, move around as much as possible (that’s a laugh, that, isn’t it?), do the inflight exercises they show you.
Heat can also aggravate lymphoedema, but if you are on holiday and not using your arm much, this might not happen. It’s a good idea to pack some long sleeved T-shirts/tops use high factor suncream, take insect repellant, antiseptic spray/cream, moisturiser for your arm and also to ask your GP for some prophylactic antibiotics for you to take with you just in case of a bout of cellulitis. Swimming in the pool/sea is really good for your arm.
The sleeves are hideous and conspicuous, it’s no wonder none of us want to wear them!!! Perhaps you have a couple of tops with really long bell sleeves or similar that would hide your arm and much of your hand if you arm starts to ache?
Finally, if the sleeve they have given you is horribly uncomfortable, it might not be that good a fit - might be worth investigating.
Anyway, hope you have a lovely holiday despite your misgivings (I’ve read your other posts) and without any lymphoedema related problems either.
Have also sent you a pm.
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Hi Irene,
I have just bumped up a thread I started a couple of months ago about this. I will definitely be wearing my sleeve on the flights, and as we are going into a malaria area (safari in the Kruger National Park in South Africa) I also plan on wearing it in the evenings when the mosquitos are out for extra protection.
Enjoy your holiday!
I can always rely on the good advice given on here. Really not looking forward to wearing my sleeve in hot weather, but will wear it on the plane. When I said it is uncomfortable, apparently it fits perfect as had it checked, it’s just me, I HATE it!
Someone on here did say that in her hosp they don’t consider treating under 10% as in some folk there is as much as that naturally i.e. larger muscles if it’s your dominant hand.
As this is pretty well a holiday of a lifetime, we have booked premium seats with free alcohol all flight so avoiding alcohol is a bummer! Think I’ll just try and be careful.
Irene
Hi Irene
I wouldn’t say you’d have to avoid alcoholic drinks altogether… I certainly don’t when I fly! (And I’ve never had any problems with my lymphoedema) I just take it easy and have plenty of non-alcoholic ones, too. It IS a holiday, after all. Make the most of those premium seats!
(Slightly off-topic, but when they often don’t tend to measure the size of your soon-to-be-at-risk arm pre-op, and only compare it to your good arm when it starts to give trouble post-op, means that a valuable piece of info’ is lost - for ever.
And I suppose that the trouble with having a dominant arm with lymphoedema is that it’s harder to rest it and train yourself to use the other one more…)
Sorry, Irene, rambling on on your thread.
If you have the time/money you could think about getting a colured sleeve; they’re slightly less hideous…
Take care
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bahons
Thanks for the email regarding lymphodeama but not sure you sent the right sheet, very little info on this, mostly about the charity at the Royal Marsden.
Irene
Hi Irene
Just checked my outbox.
I sent three files, two Word, one jpeg. One of the Word files was very big - was it too big for your inbox, I wonder. Will resend anyway!
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