Welcome to lymphedema!

In England in late September my left arm started to swell up a bit–mostly it seemed like my hand.  This is the arm with the DVT (blood clot) under the collarbone, and thus the arm I’ve been wearing a lymphedema compression sleeve on since early April to try to prevent lymphedema from developing.  Lymphedema is common in an arm when you’ve had lymph nodes in your armpit removed as part of breast cancer surgery, which I have–in 2006–though I never had a bit of trouble or swelling with it before the DVT.  Anyway the DVT is a risk factor for lymphedema too, because it causes venous congestion, which is a different kind of swelling but can interfere with lymph drainage.   You have a whole set of lymph vessels and lymph nodes in your body that collect and drain lymph fluid as part of your immune system–lymph takes away the used-up after-effects of infection and your body’s fight against infection.  Lymph nodes are the stations along the way where your body kills off organisms that shouldn’t be in your system (making more by-products to get rid of).  Then it all drains into your bloodstream at the end.  So it’s kind of like the Gowanus Canal–you don’t want it to just SIT there not moving.

You can check out this image to show the lymphatic system: Diagram of lymphatic system if you’re interested

Anyway there I was with possible lymphedema, but before I knew it I had blood clots in my lungs, and wasn’t allowed to follow up on the arm swelling because massaging the arm/shoulder might loosen up a few more clots.  So I didn’t get to go until I was safely back on blood thinners for a while–Thursday before last.  I learned how to wrap my arm in “graduated compression” bandages and look like a mummy.  This, along with gentle massage of the lymph channels from my hand to my neck including my left side, would encourage the static lymph fluid to move along as it should.  But it might take many weeks.  ARGH! Another self-care thing to do, and this one takes about 20 minutes a day.  Just what I needed.  Then before my next followup appointment I was in the hospital with pneumonia.  So I had to cancel last week’s appointments but it was really working!  So I was excited to go in on Tuesday and show off my progress.  Which was indeed impressive.  (I think it’s because it was only a month of not treating it–not enough time for the lymph vessels themselves to get too damaged, so the flow out of my arm can still happen the regular way rather than slowly through the tissue itself.  (Remember, everything in the circulatory system and lymph system works by differential pressures of different substances, and everything moves toward a lower-pressure area if it can. Veins and lymph vessels don’t pump their fluids themselves at all.)

Anyway, for some geeky reason I thought it would be fun to show how the graduated-compression wrapping works.  So here is a brief photo series.



The prescription is to wrap the arm 23 hours a day!

When it’s time to redo the compression wrapping, first I take all the wrappings off my arm.

Then I shower.  Then I apply more moisturizer than I normally would.

Then I tackle rolling up the bandages again (which are like Ace bandages but you don’t stretch them much at all).





So here are all the things I need, all ready for the wrap job.  (Which I have decided to consider as a craft project.)

3 bandages in different widths, but first: the stockingette sleeve and the foam layer.

Then three bandages, finally secured with those little clips.

It all takes about 10 minutes from here.





First the stockingette sleeve with a hole cut for the thumb.  This protects the arm skin.






Then the foam strip gets wrapped from the thumb around the arm up to the upper arm and tucked in to itself.  This provides more padding and protection for the arm.







Next comes the narrow bandage that starts at the wrist and wraps over the hand 3-4 times, then goes up the arm until the end.  Then a piece of surgical tape secures it (though again, it isn’t wrapped very tightly).

Don’t tape the foam or it rips!




Next the medium-width bandage, which starts below the wrist and goes up as high as it goes, then gets taped.

You’re supposed to avoid wrinkles in the bandages.  But you also wrap it loosely enough that you can move your elbow freely.





Finally I put on the third, widest bandage, which often needs some assistance to get right, because though it starts below the elbow, it goes almost to the shoulder and it’s hard to do it right way up there where I can’t really see.

That bandage gets secured with the clips and then–pro tip!–tape goes over the clips to keep their sharp edges from catching on my clothes.

Then the extra stockingette gets pulled down over the top of the bandage to further protect my tender skin.

Voila!  All done until the next shower.


And it’s working really well!  They told me 4-6 weeks of wrapping before the arm would go down enough to stop wrapping and switch to a new fit and strength of compression sleeve instea, but by next week I’ll be ready for that step.  Yay!  (You should have seen the left arm–on the right in this picture–a couple weeks ago.  It looked like a quite overweight person’s arm–still arm-shaped, but really big and round in all dimensions, and tense.

IMG_1194 What a relief that something is going right!  Even better than expected.

I need that right now because I’m still knocked out by the pneumonia (and blood clots in the lungs) and everything else seems like a big challenge everywhere I turn.

We are receiving so much help and company that it is easy to keep my mood basically positive most of the time, though.

2 thoughts on “Welcome to lymphedema!

  1. Gina Qualliotine

    Cool! Martha Stuart ain’t got nothin’ on you for the craft projects. Only I’m not sure the bandages are cool enough colors for her and maybe you could use my heart hole punch to spruce up the bandage ends? or some rickrack? : ) Actually, this could be a really useful post to somebody trying to figure out how to work with a similar situation. Especially as it worked so well. Your arm looks SO much better! Yay.

  2. Alice Raymond

    Lymphedema – Yuck!

    But you are dealing w/it so well – a craft project, yes!

    May this latest problem be gone soon – so glad you have lots of company.



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