Hi Ladies
Last evening I was asked to take part in a trek/hike up Mt Kilimanjaro next yr ( for a charity of my own choice no prizes for guessing who the charity would be) I am really excited about the possibility of this. BUT I had WLE x2 and ANC in 2010. I currently have not got lymphoedema. When I had my first hols after all active treatment the Specialist LE nurse at my breast clinic saw me and did measurements of both arms and provided me with a sleeve and gauntlet to use on the long haul flight.
I am wondering whether it would increase the risk of lymphoedema if I did this climb?
Any info would be gratefully received
Many Thanks J x
Bump
Hi Libby,
I suspect this is an area where no-one really knows for sure. Even when I flew long haul in 2009 the nurses at my lymphoedema clinic had to dig out an article in a medical journal to read about it for themselves.
If you google ‘lymphoedema risk high altitude’ most things that come up are related to flying rather than treking although there are one or two references to treking - interestingly one to a thread on here a few years ago.
The consensus seems to be that there is probably a risk associated with high altitude treking, but nothing definite.
My husband did this trek last year - it was very tough but he enjoyed it and would go back to do it again. So best of luck!
I have stage 1 lymphedema, i.e. my arm can swell with certain activities and/or in hot weather, or recently as a reaction to a bug bite. I find when “hiking”, that on both arms my fingers feel a bit “sausagy”, especially if wearing a backpack. I’ve just been provided with a glove and sleeve at 20-30 mmHg compression.
I live in Calgary, Alberta, so I’m at a highish altitude (4,000ft) to start with, and mostly hike in the Rocky Mountains, although haven’t been up there much recently. (Edit: I’ve just realised Kilimanjaro is 19,000ft, so WAY higher! 
) I’m looking forward to a proper hike now I’m getting to the end of my treatment: two surgeries and 6 months of chemo done, and only rads to go!!! Unfortunately our region has just been hit by major flooding, and many of the beautiful trails have been totally destroyed! 
I would suggest you ask your local lymphedema therapist/nurse for advice, but I should think it’s a good idea to plan to wear your sleeve while you are walking, as a preventative measure, and also to protect the arm. Maybe it would be a plan to take antibiotics with you, or make sure you’d have access to them during the trip, just in case of an infection developing?
Hi Roadrunner and Morwenna thanks for your replies. Very helpful. I do have a sleeve for use when flying long haul. It also been suggested that if walking poles are to be used I practice with these first, so that my ‘at risk’ arm doesn’t get a big jolt. I do have a supply of ‘emergency’ anti-biotics from my GP in any case.I will use the google search too. Hadn’t used those specific words.Thanks again ladies x
Libby-2010,
In case this helps you with your decision:
I’ve found a really good US website (National LymphedemaNetwork lymphnet.org/home.htm) with “Position Papers” on all sorts of topics like exercise, risk reduction, and flying.
lymphnet.org/pdfDocs/nlnexercise.pdf
lymphnet.org/pdfDocs/nlnriskreduction.pdf
lymphnet.org/pdfDocs/nlnriskreduction_summary.pdf
lymphnet.org/pdfDocs/nlnairtravel.pdf
It doesn’t seem to mention high altitude, but 18,000 feet is a lot higher than the air travel air pressure equivalent height 6,000 to 8,000 feet
The NLN does not specifically recommend prophylactic compression garments for air travel (for people who are only at risk), but they should be considered - see their air travel paper. At risk people should make their own decision on this based on information and their own risk factors. People with lymphoedema are advised to use compression garments.
The NLN say that if you do decide to use prophylactic compression when flying get one fitted by a specialist and also wear a glove or gauntlet with the prophylactic sleeve.
In the NLN Risk Reduction paper (see above link), they say that wearing a compression garment during exercise is probably unnecessary for At Risk people unless swelling occurs during exercise, if exercise is more intense than usual or in cases of signficant over-activity. (There is different advice for at risk people and those with lymphoedema.)
Based on the above, I would seriously consider wear a glove and sleeve and also seek professional advice from a lymphoedema specialist about the trek and the altitude.
You also need to get advice on altitude sickness and how to reduce its risk for mountains as high as Kili.
Good luck with your big adventure!
Thanks Black Swan
I do have a sleeve and glove for long haul flights from the Spec LE nurse at my clinic although I do not have LE but am at risk
BTW I had found those American sites too
I had also arranged a phone call from my GP ( who has done 14 charity climbs) over the years to talk through loads of this too Unfortunately I had already found that I have an allergy to the drug needed for anti altitude probs ( Diamox) MY GP was very informative too The LE stuff was seemingly very minor in comparison to the other stuff . I am disappointed but am looking at lower altitude climbs eg Manchu Pincue (sp) xx
Hi Libby
Sorry about the disappointment for you.
Interestingly, it seems that hyperbaric chambers are being used to treat lymphoedema with some promising results but the evidence isn’t strong yet. Logically (?), this might also imply that it would be better not to go to high altitudes where oxygen uptake is more difficult - so perhaps from a potential lymphoedema point of view it’s better to keep to lower altitude climbs.
Elinda x