Flying--Gauntlet vs. Glove with established LE

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OneBadBoob
OneBadBoob Member Posts: 1,386
edited June 2014 in Lymphedema

Okay, I have been dealing with LE, bilateral, chest and thigh, for close to six years now.  Things are pretty much under control.

Have been wearing night sleeves and day sleeves and gloves when exercising, together with compression bra and compression hose when flying.  Thought I knew what was best for me.

Took a recent trip to Hawaii from NYC and figured since all was well, and my fingers have never swelled, I would just wear gauntlets instead of gloves on the flight.  WRONG!!!!

Into the LAX-Hawaii portion of the flight with only gauntlets on, my fingers swelled like sausages!  And the pain was just incredible.  I was shocked at just how bad it got.  Tight shiny painful fingers.  Throbbing.

Not being totally stupid, I had packed gloves and wrapping supplies which came in quite handy after we landed to get the swelling down.  Wish I would have worn gloves with me on the flight as I usually do.  Next time for sure.

Just a warning to all.  An ounce of prevention is worth a pound of cure.  Flying really wreaks havoc with our lymphatic system and please, we should all be proactive and protect ourselves, no matter what any experts or studies may show.

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  • Estel
    Estel Member Posts: 3,353
    edited March 2014

    OneBadBoob - Thank you for the reminder and the advice.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2014

    Im sorry for your horrid episode but great post OBB. I agree. Prevention is better than cure any day.

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  • Estel
    Estel Member Posts: 3,353
    edited March 2014

    And I'm sorry that your fingers swelled up.    

    Is everything back to 'normal' now?  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    OneBadBoob, thanks for the heads-up. I too am inclined to "forget" what a rot LE is when it's been in good control for a while. I think it's just hard to believe, and we keep on hoping we were imaging it. All I have to do it let things go even just a little, and LE is only too happy to remind me it's still here and still wants all the attention.

    Grrrrrr!
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2014

    OBB, Thanks for the experience. I would love a experiences with flying thread.

    My fingers in my new custom glove have to be stretched out with big fat markers and leave me with a slight cold fingers and tinged blue. This seems to work for me and have been wearing them for 3 weeks now.  My gloves are made about one inch down from finger tips to avoid the freezing cold, squeeze and tingles which I got in a full custom glove. Do you think that the exposed fingers would swell in flight?

    I have been thinking of taking a 6 hour flight for the first time with LE. Do you think it would be better to take a 2 hour flight with a night over and then continue?  I am also thinking just maybe a 2 hour flight instead. Me big chicken to fly with LE. I have trunk, hand ,arm LE,

    Also if you were in flight and swelling, could you take off sleeve, glove on the flight and wrap right away or would you balloon even more while wrapping for 45 minutes?

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  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited March 2014

    Hugz there are different opinions on this.  I was told by my trusted LE therapist that the more ups and downs in pressure changes the worse it is for LE.  Binney, Kira, any opinion?

    Just me personally, I would not remove my sleeve/glove during flight to wrap.  Was always taught to clear nodes and MLD arm before donning compression garments or wrapping.  Better to plan ahead and wrap in the first place.

    Thinking of when you take off your shoes on a flight and your feet swell to the point you cannot get your shoes back on.

    I would think you might balloon even more after removing sleeve/glove.

    Everything is back to normal for me now, thanks for asking

    Binney, Kira, could one possibly wrap over a sleeve and glove if swelling on an sir flight?  Or put a night garment on in flight over your sleeve and glove?  That would seem preferable to me rather than removing sleeve and glove in flight.

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  • Estel
    Estel Member Posts: 3,353
    edited March 2014

    One time while traveling (driving) I wrapped over my sleeve and when I took everything off that night I had the worse flare I've ever had … my hand was as big as it has even been.    But that may be an instance where it is just me and it wouldn't affect anyone like that.  But for me, I couldn't do it … that is wrap over my sleeve.

    I flew for the first time since I was dx with LE in February.  I had forgotten how small and how tight the seats are placed.  I don't think I would have room to wrap myself in flight.  I'm not very good at it anyway … and with the tightness, the bumps of flight it would be difficult to wrap in flight … but again … that is just me.  

    My left hand/fingers are my worst LE problems.  And I flew with that hand wrapped.  My right hand, I wore a glove.  When I land, my wrapped hand looked better than the gloved one.  If and when I ever fly again … I will fly with both hands wrapped.

    But again … who knows … this may be yet another instance … that what works for one … won't work for another.  So hate that aspect about LE … all trial and error.  

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  • Estel
    Estel Member Posts: 3,353
    edited March 2014

    O.B.B. - Glad everything is ok now.

    Have to say I was terrified to fly with LE in February … but with all I've learned from you ladies on here … I did OK.  I took all the precautions I read on here … I don't normally wear a compression shirt … but I did that too on the flight .. and I did OK.  I had a connecting flight … so one flight was 2 hours, the other 2.5 … so I wasn't in the air that long at a time … my next big step would be take an overseas flight.  

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2014

    We drove out of the valley we live in yesterday, not real high, but enough to cause problems if I don't take precautions. So I wear my regular day garments until we start to ascend, then remove my gloves and slip on my night garments. I wear my night vest right over my clothes, since I take it off once we arrive at the area where we're planning a picnic and hike. Same thing descending, though I leave the night sleeves on awhile once we get home. But for flying--I always wrap. It's the gold standard and I have to worry less, and I end up not having to "repair" flares at my destination.

    And this is for Hugz: we picnicked and then started on a fairly gentle hike, and our little Corgi medical alert dog was alerting our daughter like crazy. We brushed it off at first--we'd just eaten and couldn't imagine her blood sugars could be in trouble so soon. Little dog wouldn't quit (that's called "intelligent disobedience"!), so I finally told everybody to stop so DD could do a blood test. Sure enough, waaaaay low. DD doesn't sense lows very well (which is why we have an alert dog), and this time she said she felt a little dizzy but thought it was because of the altitude and the heat (low 80s). So wee Corgi saves the day!

    Whew!
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2014

    Here's my take on flying: for short flights, I wear my Tribute, which I virtually never use, except for flying, and put a short stretch over the hand--a 6 cm which I extend up the forearm. Anything longer than a couple of hours, and I wrap. Flew 6 hours last year, wrapped, with no problems. 

    I don't find that the sleeve/glove combo is ever good for me, so I avoid it. I just wear a glove when exercising.

    I don't know about wrapping mid-flight, but I think if you're really proficient you could possibly do it, but the seats are really tight. 

    I've never wrapped over a glove, and I find that day time compression wear doesn't do a wonderful job for me--reality for me right now is rare use of the custom glove. But I do wrap every darn night. Getting way old, but it works.

    Jane--what a horrible thing to happen. Remember how my wonderful LE therapist called LE "wack a mole": it just pops up....

    Binney--good intelligent disobedience!

    The NLN has refused to acknowledge that flying can be a trigger, but I heard Sheila Ridner speak about it at an NLN conference, and she said "woman after woman said that flying caused her LE" and Jane, as I recall, the grad student told you that you were the 200th person to mention flying as a trigger when you were in a clinical trial--where the principal investigator believed that flying was not a trigger. 

    Stanley Rockson doesn't answer my emails anymore, since I questioned the ethics of his relationship with impedimed, but on the LRF site he says: 

    Prior to my cancer diagnosis, I led a very active lifestyle. Now
    I am nervous that my former activities could cause lymphedema to
    emerge. What do you advise?

    My earnest advice is that once you are a cancer survivor, you must
    enjoy the gift of life. This means not placing boundaries on what your
    definition of being alive. It is true that there is a small, finite risk
    of lymphedema appearing for the first time in somebody at risk, or
    becoming worse in someone who already has it. However, with the
    appropriate precautions, those risks are quite small. It is very
    important, activity by activity, to weigh the risk-to-benefit ratio.
    There is some finite risk of lymphedema with activities like surfing
    rock climbing, to choose two random examples. But you have to weigh the
    importance to your life of those continuing experiences. With or without
    ‘risky’ activities appropriate treatment for lymphedema is essential
    when the lymphedema appears. It is very important to faithfully use the
    garment that is provided to you, particularly during the activity poses
    theoretical risk. It is very important to maintain surveillance for
    changes in the limb-at-risk. Take precautions against infection when
    there are breaks in the skin and seek medical attention early if any
    changes are observed. When you go outside, put on a sun block, because
    sunburn can aggravate lymphedema. When you are working in the kitchen,
    be careful. When you’re in the garden, be careful, and wear gloves if
    there is the possibility of skin trauma. But what you want to lift,
    lift. What you want to do, do. And where you want to go, go. Just be
    careful.

    http://lymphaticnetwork.org/living-with-lymphatic-disease/you-and-lymphedema/

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2014

    OBB,Dawne,Binney, Kira. You girls are fabulous with all your experiences.Happy What would we do without these boards.

    So I would wrap for sure instead of a glove and sleeve before flight which reminds me I need to practice again. I pretty much have it down pat but it still takes me 45 min if I am careful. I still am not sure if I am wrapping too loose. I sure know if it is too tight!

     Also a underarmour tee with a swell spot underarmpit and I wonder if it is overkill to wrap the unaffected side with the prophy mast. I can't imagine what a strip search would be like with all this LE gear!

     Eeeeeks, maybe this is why I don't want to fly. Thank goodness I am done hot flashes, I couldn't do it with all that stuff on!

    Binney, Your Corgi is putting my puppy to shame. I kinda quit training her but she is still eager to learn. I will probably take her to doggy class late spring for recall training.  She still chases cats so I have to have her on a leash always so she won't run away because.......we still need to work on recall..ughhhhhhh.

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  • Estel
    Estel Member Posts: 3,353
    edited March 2014

    hugz - Just to clarify … I flew with my hand and fingers wrapped, not my arm.  I wore what I usually wear to the gym and my time with the trainer.  The only thing I added for the flight that I don't wear to the gym is a compression shirt.  

    Probably because I'm not doing it correctly, wrapping my arm(s) doesn't work for me … I can do it for short periods of time 2-3 hours … more than that … wrapping my arm is counter-productive … causes more swelling than it helps.  Again, I'm probably doing it wrong and doing it too tight.  I got so nauseous the time my therapist wrapped me.  So, no arm wraps for me … just finger wraps and my hand.  Wore sleeves for my arms.  

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2014

    Dawne, Thanks, these experiences are really interesting. No LE exactly alike.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited March 2014

    I am so thankful to have all of you. I am flying 7 hours in a few months, I have flown before and was fine with sleeves and gauntlets, but now I have noticed I was a size 5 wedding band and I had to have it made to 7 1/2...and I am concerned about flying.

    How do you buy a compression shirt? What sort of store? Do you get professional advice for this or just try them on?

    Does insurance cover a LE appointment? I do have a therapist nearby, but I am sure for a 1 time appointment it is very expensive.

    I do not know how to wrap, so should I try to pull this together on my own, or spend the $ and see the LE therapist for professional advice?

    My arm/hand does not look visually bigger, but of course I know it is.

    Thanks to all!

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