Traveling with Lymphedema

I know that traveling with lymphedema is a big concern for many people. There has been a lot of discussion over the years about the use of compression and the “dangers” of flying. It saddens me when I speak with people who are afraid of traveling because of their lymphedema.

I am a strong believer that I won’t let anything get in the way of me living my life, especially my lymphedema. I would never want to miss out on the experiences I get from traveling. Traveling with lymphedema is very doable, you just need to do a little extra planning and be aware of situations that might cause you extra stress. As Amy said in her last post, stay in control and don’t sweat the small things!

Here are some of my travel tips:

  1. Compression: Since I have lymphedema and wear compression all of the time anyway, I know that I need to wear compression during after my flight. Talk to your CLT before you fly for the first time to make a plan that works for you!
    • I typically wear my daytime garments (sleeve and glove) through security.
      • Try not to get upset if TSA ask you about your compression garments. I have been pulled out of line and had my garment swabbed so many times that I now expect it and have my answers ready.
      • Try to think of this as an educational experience. If you are asked about it, you can simply explain that you have a medical condition that requires a medical device. In my experience, TSA workers are nice and helpful after that explanation.
    • Once I get through security I go to my gate and bandage my arm (for me that means putting on my bandage alternative). I find that my bandage alternative is more comfortable and provides me with better compression for the flight than my day garments.
  2. Drink plenty of water! I know that many people think drinking water will make them swell more, but remember that lymphedema is a buildup of lymphatic fluid and not water. Drinking water will actually help move the fluid through your system and is helpful for you!
  3. Luggage: If you have upper extremity lymphedema, think carefully about what luggage you plan to bring. You don’t want to have a carry-on bag with a shoulder strap that goes on your lymphedema side.
  4. Food: As Amy so wisely stated in her last post, think about your food options and try to bring snacks from home that you can eat on the flight. You want to avoid sodium filled snacks that can make your swelling worse.
  5. Move around! If you’re going to be on a long flight, you want to make sure that you stand up and move a around a little to help keep things flowing. Don’t keep your limbs bent in one position for too long.
  6. MLD: Especially for long flights I like to do a mini version of MLD while I’m on the plane. This doesn’t need to be a full session, but I like to at least take a few diaphragmatic breaths. It’s calming and also helps my lymphatic system.
  7. Heat and humidity can make you swell more. When I’m traveling somewhere hot and humid, I try and keep my compression on as long as possible before getting the pool or ocean. Water has compression in it, plus swimming is great for lymphedema, but be aware of how long you keep your compression off. You’ll start to feel it when it’s time to put it back on!
  8. Jellyfish: I would encourage you to try and wear clothing that covers your lymphedema if you go snorkeling somewhere that might have jellyfish. From my personal experience, getting stung by a jellyfish (in two different countries) didn’t cause me any physical issues with lymphedema. It did, however, freak me out both times! It also freaked my CLT out when I emailed her from Costa Rica to tell her about it!

Things to bring with you:

  1. Compression supplies: I always make sure to pack extra bandaging materials, an extra set of garments if I have them, and plenty of lotion. It might seem like a silly thing to point out, but it’s much easier to have these items with you than have to worry about replacing something when you’re away.
  2. First aid kit: I always travel with a small first aid kit with antiseptic, band aids, and a topical antibiotic cream, just in case I get a cut, scrape, or anything else while I’m away. (This also lives in my purse at all times!) You are at a higher risk of infection because of your lymphedema and it’s good to be able to clean and cover any wound when it happens.
  3. Prophylactic antibiotics: This is something you should discuss with your doctor, but when I’m traveling out of the country, into the woods, or anywhere that isn’t close to a hospital, I always bring a filled prescription of antibiotics. In my 9 years of having lymphedema I’ve never had to take them, but they make me feel like I have a safety net. If I were to get a cut or even a bug bite that starts to look red or infected, I can take them right away and then find a hospital. This gives me a lot of piece of mind.
  4. Sun screen and bug spray: You want to try and avoid getting a sunburn in general or getting bug bites on the areas with lymphedema. I always make sure to wear and reapply sun screen and bug spray as often as the package tells me.

The most important thing to remember is that you need to live your life WITH lymphedema! Don’t let it or your fears take control. Have fun, experience new things, and most importantly, laugh! Laughing is also great for keeping your lymphatic system flowing! 🙂

Travel well,

Robin

p.s. Here are some photos from my most recent trip to Mexico.

Robin.lymphedema.sleeve Robin.lymphedema.sleeve.dress Robin.feet.beach.lymphedema mexico.lymphedema

16 thoughts on “Traveling with Lymphedema

  1. Valeri says:

    Thank you so much for the sharing. . . helps me think about traveling more but . . I have left leg lymphedema, and I’m really poor at wrapping my leg, and even when I think I’ve done a good job, on two occasions, for a day road trip, my leg didn’t look too good or like it had been wrapped. So as much as I’ve flown and traveled around the world in my life, I’m still not sure I can travel ‘safely’ so to speak. I’m just glad I’m stuck in Florida . . .

    Liked by 1 person

  2. Carrie says:

    Thank you for this. I am starting to experience swelling in my right arm where I had my mastectomy. It’s really upsetting me. I have not officially been diagnosed with lymphedema (I do have cording and the swelling seems to move to where a new cord develops) but they want me to get a compression garment. Not sure how I feel about this. Any advice?

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    • ro81nm says:

      Carrie- I would highly recommend seeing a certified lymphedema therapist (CLT) about your swelling. Compression is one of the best ways to treat swelling, but you want to be educated about lymphedema, taught MLD if needed and fitted for the correct type of compression. Plus your CLT should be able to help with your cording. If you need help finding a CLT, please let me know! And hang in there, I know that it all seems scary at first, but getting a good CLT can really help you! ~Robin

      Liked by 1 person

  3. ro81nm says:

    Thanks for sharing! Have you tried to wear a bandage alternative product? There are so many great ones out there that are easy to put on and adjust and will provide you with great compression. I wear one every evening and I would imagine that you would do well with one since you live in such a hot and humid place. I would talk to your CLT and see what he/she thinks might work for you! I hope that you can get some more traveling in!!
    Best, Robin

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  4. Rosalinda Lara says:

    Robin, I have the same question as Valeri. What kind of bandage alternative do you wear?
    or which one do you recommend? I have left leg lymphedema and will be traveling soon. I dont want to take all my bandages with me as I am going to a beach. I wear my compression garment all the time.

    Liked by 1 person

  5. ro81nm says:

    Sorry for the slow reply! I’m thinking that I should probably write a whole post about bandage alternatives! There are so many great ones out there, but it sort of depends on where you have the lymphedema and whether or not your limb fluctuates is size. My arm is pretty stable (the measurements don’t really change) so I wear one that can’t change in size. It’s made with chipped foam to help with fibrosis and sort of looks like a huge oven mitt to me. I wear a Tribute by Solaris (www.solarismed.com) and have also worn a Jovi Pak (https://jovipak.com/), and find them both equally great for me. There are also a bunch of garments made with velcro closures that are better if you have some fluctuation in size. There are a bunch of great ones, but they all have different styles that depend on how much compression you need, shape of your limb, etc. Definitely talk to your therapist about what type of garment is best for you, but I would look at the options online just to know about all of them. CircAid by medi makes a few different products that are great (http://mediusa.com/portfolio-item/circaid-ready-to-wear-and-customs/), FarrowMed makes different fabrics and styles that are great (https://www.farrowmed.com/) and Solaris makes velcro garments as well that are also great. BiaCare also makes great garments, especially for limbs that are larger, or tougher to fit. (http://biacare.com/)

    I hope this helps! I’ll try and write a post with more info about bandage alternatives soon!

    Robin

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  6. Terry Hendricks says:

    I am a elderly man recently diagnosed with lymphedema below the knee s in both legs. Nurses and a CLT have been caring for me but I am being encouraged to begin self-care when ulcers and drainage are under control. I am comforted to read about your success with self-care. It was recently determined that wrapping foam under the Velcro compression leg wraps may prevent my skin from rupturing. Your supplier referrals and personal testimony are helpful. Thank you for sharing.

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    • ro81nm says:

      Hi Terry, I’m glad you were encouraged by our self-care stories. I really believe that lymphedema is something that you can learn to live with, you just need to be patient while you figure out what works for you. Self-care is a huge part of lymphedema and you will feel so much more independent when you are able to care of it on your own.

      Remember that you still have your team and you’re not being kicked out the door and forgotten about it one you move into the self-care phase. You should still check in with your team and make sure what you’re doing is working and that they don’t have any suggestions or tweaks as you get used to your routine.

      Keep at it! I’m happy to hear it is going so well for you!

      Robin

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  7. Adi Arya says:

    Hi Robin,

    Thank you for writing this blog. You are very inspirational.
    My mom had breast cancer lumpectomy and radiation last year. She had 15 axillary nodes removed. She already has breast lymphedema and is at high risk for arm lymphedema. She is traveling for the first time since her cancer treatment. I need advice about air travel.

    I want to know if A) one 8 hours long flight is better for her than B) 2 flights – 3hrs and 6hrs long (with rest for 1 day between her flights).

    I have read the air travel article on lymphedemablog.com. It’s a great article but I am still not clear about which option is better. Is it important to keep the flight duration short and take more flights or is it better to take fewer longer flights ? I’m really hoping you can help me.

    Thank you !

    Best wishes,
    Adi
    aditiarya@gmail.com

    Like

    • ro81nm says:

      Hi Adi,

      Thanks for reaching out! Traveling with lymphedema is super tricky, and I think it can go person by person. Has she talked to her therapist? For me, I find that the more I travel the worse my arm gets. I don’t think that actually applies to the breaking up a flight vs 1 longer flight. I was just on a short tour of Europe so I had the long 15 hr flights on both ends, but we traveled to many countries in a 2 week trip and flew about 5 times in between which is where my arm started to be a little less happy. I had the same thing when traveling to Australia and New Zealand. There were a few smaller flights between the large ones, but I just needed to be more careful about doing self MLD and wearing compression when I wasn’t traveling. It all worked out.

      As a patient, I personally think that you should live your life and make your lymphedema work with it. I always make sure that I bandage/use a bandage alternative before the flights and keep compression on before and after. Have her try to do some simple stretches and/or diaphragmatic breathing to keep her lymphatic system moving while on the plane. Have her ask her CLT for suggestions on those things. Besides that, always travel with antibiotics just in case you see a sign of infection. I’ve been doing it for 12 years and never have issues, but I like to know it’s there. I also always travel with wound care products like bandages, antibacterial ointments, things to clean it with, etc, plus skin care like bug spray, sun screen and lotion or aloe, just so that you always have it it you need it.

      Besides that, have fun! That’s what life is all about. 🙂

      I hope that helps!

      Robin

      Like

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