Thinking about flying

Cookie, it took me around two years to fly, and it is liberating. I think you should go with what works for you--the sleeve and glove. For me, wrapping works best, so I've wrapped or worn a Tribute with a short stretch over it.

My first trip was two short flights. Next was a 5 hour flight. The irony is that I fly a couple of hours twice a year for board meetings for a Lymphedema organization, and I fly twice in two days and it tends to beat me up.

I forgot, I flew around four hours to the last NLN conference.

My parents live on the other coast, and I haven't managed the six hour flight yet.

I just arranged for a cell phone for my younger daughter who is meeting a friend in Costa Rica, she had some medical issues that were exacerbated by flying, but since she's got them under control, she's been to Europe twice and Israel. Me, not so willing to take long flights.

I used to struggle with sinus infections after flying, but LE brings a whole new level of risk and concern.

I totally agree with Ohio, it's a risk and we need to be mindful, but we need to be mindful of limitations set by LE.

I had a very nasty flare up of LE in my upper arm, trunk, shoulder and neck area two weeks before our long planned vacation taking a plane to our destination.  I was soooo nervous it was going to ruin my entire trip.  By the graces above I got into see a massage therapist a week before our flight and was able to decompress a lot of the build up.

After all the worry, I had no problems.  I only wore a sleeve and gauntlet on the plane (it's all I have, truncal part is new).  Made sure I drank a ton of water, no coffee or soda.  

While on vacation, we did a ton more hiking, fishing and walking than I normally do and by the end of our trip most of the swelling was gone.  So either the lull of symptoms occurred because of timing from the massage or because I was more active than normal. 

Now that I have been back at work for a week, the swelling has started again.  I am wondering if my sedentary work life at a computer is affecting the LE.  Going to try and get more active and see if that helps.

Cookie and others--I am going to fly for the first time since LE in early September.  I have stalled long enough.  The only reason I am nervous is that I always had swelling in legs and hands when flying.  I went to Italy two summers ago and my left leg got horribly swollen for several days.  But I do have a 3 hr domestic non stop.  Will use all of the tools I have at my disposal.  I have lost 70 lbs since then too and hope that makes a difference.  It certainly has made a difference in my LE.  It seems so many others have weighed in saying they flew without problems so I am going to bite the bullet.  What a crap shoot--right?

My PT advised to wear the sleeve at least 2 hr. after landing.  I haven't tried it or gone anywhere yet.

Anyone have any experience with high altitude places, for ex. Colorado?

I would vote for antibiotics, cellulitis can be swift and dangerous. Use it if you develop a red rash, fever, flu like symptoms.

Earlier, there was a question about erysipelas, which is a kind of cellulitis, and I found this great article about cellulitis on the lymphedemablog (thank you Joe Zuther!) Show it to your doctor if you get any grief, and get a script for what ever antibiotic you are not allergic to that works for cellulitis--a lot of women here get keflex or augmentin or cipro.

http://www.lymphedemablog.com/2010/10/29/infections-associated-with-lymphedema/

When I was at the radiation oncology practice, a lot of women would fly just as radiation was over, to celebrate, and one woman really worried me, and I got her a keflex prescription, and sure enough, she got a whooping breast cellulitis in Punta Cana, and they wanted to admit her, and she took her keflex and came home--she brought me medical records in spanish.

The former Soviet Union, not sure about the quality of the health care or accessibility. Best to be prepared. IMO. And have a great trip and tell us all about it.

I have flown recently.  I just wrapped and went.  It didn't seem to bother me.  The Dr. recently told me that the planes are now so compressioned that it shouldn't affect you much. I noticed the problem in hauling the luggage.  Even though I just used a carryon, I am alone and lifted it into the bin etc. by myself. I think that is what leads me to problems.  

piano604, I do know that planes are compressed, but ask your doctor if he's ever seen a half-empty water bottle during a flight--one of the bottles of Dasani, for example, that's thin enough that it won't stay rigid during a pressure change.  The bottle will visibly collapse inward at some point during flight.  I use a rigid refillable bottle so am seeing this in other passengers' seats, and I've not been observant enough to say if the bottle collapses early, during, or late in flight, or if there's any pattern to flight circumstances--only commuter planes vs. large aircraft, or short hops vs. longer flights. But I have seen it many times and that tells me that I should not take cabin pressurization for granted. 

Then there was the time I was in a very large jet, and a cockpit window cracked during flight.  A heart-stopping, rapid descent to lower altitude ensued, and then they purposely reduced cabin pressure to match outside pressure, in an effort to equalize pressure on that windshield.  The captain also super-heated the plane's interior to warm up the inner window layer to make it less brittle, or some such explanation. The result was a very hot airplane with low cabin pressure, for about an hour until we got to a suitable airport for landing and an aircraft change.

For me, the bottom line is that I cannot count on the airplane to give me predictable, steady pressure, so I think it's best for me to be proactive and wear compression.

Carol

vlnrph, some adventures I can live without, like the one in that airplane.  And if the scanners can detect something unusual about our diep boobs, well...that's really too intrusive to think about!  I've had my sleeve swabbed, too, but oddly, only at my little three-luggage-carousel airport, where the TSA people all recognize me and it's practically old home week when I go through the lines.  At bigger airports, I have never once had any special treatment because of the sleeve and gauntlet. (Maybe they're bored in our ho-hum airport!)

Maybe it is safe without compression, but maybe it is safer with compression. Studies on this so far have been so poorly done as to be worthless, with dangerous 'it is safe' conclusions lacking in evidence but apparently believable if all you read is the study title. Until someone proves to me that flying without compression is safe, I will continue to take the very simple step of wearing compression. Crystal, you are so right that they don't understand LE, and it's even worse when they don't have enough knowledge to question a poorly designed study. They don't mean to be ignorant, but they are susceptible to falling for poor information.

I had a blow up pillow that went rock hard during flight.  I don't buy the cabin pressure airline statements or what my doc thinks for a second, and have also heard cost-saving measures are in effect that affect the cabin pressurization.

I will not go through the scanner.  Maybe it's mumbo jumbo, but when the company refused outside evaluation for radiation output, I said thanks but no thanks.  It is a flying ritual, and 99% of the time the extra wait is good. I have always been treated with respect and compassion, particularly when I announce I am a bc survivor.

I think it's important to note that some studies and PTs suggest compression in those without LE may in fact precipitate LE by weakening the lymphatic system.  The truth is, they just don't know, and we all are using some common sense combined with studies, and our gut.  I hate the "gut" part, it's what we do in a vacuum of weak information (for me, a logical Virgo).  I wear a sleeve for flights over 3 hours.