Backpacking and Lymphedema

Living successfully with lymphedema is a balancing act between being active without overdoing and making the condition worse. The following are the steps I took that made it possible for me to successfully go backpacking with my son's the Boy Scout troop!

When I developed lymphedema as a result of breast cancer surgery, I thought that I would not be able to backpack any more because of this condition.

As I learned more I became more confident with my ability to manage my lymphedema. Last year I decided to go on a short, overnight trip with the troop. We hiked 7 miles the first day. My pack weighed about 25 pounds. The second day was only a few miles hike back to the truck, but it was all straight up to get out -- so it felt a little longer than it was.

I did not have any increased swelling after the trip. (I know this because I keep a measurement diary and measured several times a week.) I would like to offer some tips that I think helped me.

• As always I wore my compression garment on my right arm.
• It was not a hot, humid weekend when I took the backpacking trip. I think this made a big difference. It was rather cool and rainy.
• At no time did I really push it hard enough to overheat. I hiked at a pace that was very comfortable, even though we had quite a few big climbs. I also trained for a few weeks before going so I would not overheat as quickly and so I would feel strong for the hike.
• I used a hiking stick so that my hand/arm were always elevated while I was hiking, as opposed to just hanging down and swinging while I walked. I think this helped a lot.
• I did not lift my pack with my afflicted right arm. I always lifted the pack up with my left arm.
• I kept my hand and arm elevated as much as possible. When we stopped to rest, I usually kept hding my hiking stick to keep my hand and arm elevated.
• I slept in my JoVi sleeve and with arm elevated. I put my backpack next to me in my tent and slept on my back with my arm elevated on the backpack.
• I took several doses of penicillin with me as a precautionary measure in case I cut or burned my right arm. That way I could immediately start treating myself to prevent any kind of infection in my afflicted arm.

I did the same trip this year and again I did not have any swelling. This time it was not a hot, humid weekend. Instead, it was sunny and cool, with rain at night.

I think the cool weather, the compression garment, and the hiking stick were the 3 main keys to my success. On another trip it was hot and humid and I noticed that the tissue on the inner fold of my elbow was getting irritated. I didn't know what to do then, but I do now. The secret is to place light padding to absorb the moisture may help to prevent damage to the skin. Here is how to do that:

• To do this, cut a small piece of padding, such as Artiflex padding used in bandaging, to be placed over this area (but not around the arm).The tricky part is to get the padding to stay in place as you pull the sleeve upward. Here are suggestions that help.
• Put the lower portion of the sleeve into place starting from the wrist. Before you get to just below the elbow, fold the top half of the garment straight downward.
• Place a thin layer of padding on the inner surface of the elbow and tuck the lower edge of the padding into the sleeve where you have folded it. Place the remainder of the padding smoothly over the skin on the inner surface of the elbow. (Do not wrap this around the arm.)
• Starting at the fold, carefully bring the upper portion of the sleeve carefully over the padding. (This should be comfortable.) Gently bring the rest of the sleeve up into its normal position.
• If the padding moves out of place or becomes damp, change it as needed.

I encourage others with lymphedema to stay active and not to let lymphedema limit you more than it must. I've struggled with depression on a regular basis. But professional lymphedema treatment, education, self-management, and common sense can go a long, long way in controlling even lymphedema.

Got a question or comment? Post in the 'Living With Lymphedema' forum. Share your stories in My Stories.
Category: Living well with Lymphedema