2 Steps Forward, 1 Step Back

The first time we went for therapy, I asked how long the initial, intensive phase of treatment would take.  Just trying to get a handle on what we were in for. The therapist was a little bit vague with her answer.  Now I know why!  The treatment phase is not a straight line from point A to point B, more like a wiggly, doodle-ish, curvy thing that has no set length.  The morning after the first bandaging, MA had lost three pounds (in 15 hours)!!  Three pounds of fluid pushed out of her leg.  No wonder bandaging is the gold standard of treatment - it really works.  Two steps forward.  Then came the cellulitis.  Since the lymph fluid is trapped in the tissue, it's the perfect breeding ground for bacteria, hence the infection called cellulitis.  It's apparently a common thing among lymphedema patients, and it's easily treatable with antibiotics if caught early.  Untreated it can rapidly spread throughout the body, causing all sorts of scary problems.  So, because MA's foot was pretty red, off to the doctor we went.  She was prescribed a round of antibiotics, and no bandaging for at least 48 hours.  One step back.  After a few days, bandaging resumed.  Moving forward again.  Then, the foot pain started happening and she had to remove the bandages in the middle of the night.  One step back.  Oh yeah, the infection didn't seem all the way cleared up, so back to the doctor to see what he thought.  The foot still looked inflamed, so another antibiotic was added, and once again, no bandaging for another couple of days. Another step back.  This time MA's foot cleared up nicely, and we again resumed the nightly bandaging.  Yay - two steps forward.  Next came the biggest setback yet - a rashy reaction to one of the antibiotics.  The rash, which started on her arms, eventually spread to cover almost her entire body.  Bendadryl helped the itching and kept us from going to the ER that night, but I came pretty close.  So, no more antibiotics and no bandaging for 48 hours.  One step back.  Holy cow, this is going to take forever!  In the week or so that's passed since the rash, we've started moving forward again.  I'm bandaging nightly, and every morning I peek my head into MA's room, looking for a pile of bandages, foam, and cotton on the floor.  If it's not there I know she was able to tolerate the bandage compression all night.  If I see a pile, the bandages are off.  But it's ok - just a small step backward.  I've found myself frustrated at the pace of progress but then I remember that we ARE making progress.  Since beginning therapy in late April, MA has lost a total of 10 pounds (!), and her leg measurements are slowly but surely going down.  While the intensive phase is taking longer than I first anticipated, the treatment is working and MA's leg will NEVER be as big as it was before the lymphedema diagnosis.

Bandaging 101

There's no easy fix for lymphedema, which is frustrating.  Whenever my kids have gotten sick, I've taken them to the doctor, they got medicine, and got better in a few days.  Lymphedema has totally thrown that pattern of behavior out of whack!  The most effective treatment for lymphedema is a multi-pronged approach, Complete Decongestive Therapy (CDT), consisting of nighttime bandaging, wearing daytime compression garments, a special type of massage called Manual Lymph Drainage (MLD), meticulous skincare, and exercises.  Sounds easy, right?  There are actually certified lymphedema therapists who manage this and help patients learn to live with lymphedema.  We are fortunate to have such a person at our local hospital and she has been super supportive!  MA has been seeing the therapist 3 times a week for the past month or so, and during that time I've learned to do the bandaging at home.  It's taken a few times to get it right however!  Here are a few pictures I took of the wrapping process so I had a reference when I tried it at home.

 

The first step is to apply low Ph lotion (Eucerin) to the entire leg, then put on the stockinette.  Next comes the toe wrapping and padding of the ankle joint with cotton.

Next comes padding the knee with cotton.

The leg is encased in custom-cut foam, which is held in place with a "fixing bandage", a stretchy thing with velcro on the end to hold it in place.

This is a wrap called the Roman Sandal, aka the "Most Difficult Bandaging Thing You'll Ever Have to Do If You're Not a Medical Professional".  Notice more foam pieces on the top of the foot and on either side of the ankle.  The idea with all this bandaging is to have the most compression around the foot and ankle, and progressively less compression as you go up the leg, forcing the lymph fluid up and out.  This is a 6 cm bandage and it's wrapped around her foot several times, applying lots of pressure.

Here's the HAS (Heel, Ankle, Sole) bandage.  It's 8 cm, and starts at the ankle, then around the sole of the foot, around the heel, around the ankle, and repeat until the bandage is used up.

Now we're using 10 cm bandages and going up the leg 3 times.  The first layer just spirals up the leg.

The second layer goes in a herringbone pattern.  Up at an angle, around, down at an angle.  I'm pretty good at this one - guess that's all my crafting experience coming out!

The third layer is another straight spiral.

Now to the upper leg: more foam and a 12 cm bandage starting below the knee, brought up and around, and then coming back to the knee level.

More 12 cm bandages, finishing with one long spiral from the ankle to the upper thigh.

Explaining it now, it seems fairly easy, but the first time I tried this at home it took forever.  Even with these pictures and reference notes, I had a hard time remembering the ins and outs of each wrap.  If this is you, hang it there - it will get easier!

My New Vocabulary

 It's been just about a month since the diagnosis, and I can't even believe how much I've learned about lymphedema.  Words like "stockinette" roll off my tongue as if I've been saying them for years.  I even know what they mean!  Here are a few of the main words I've learned:

Stockinette - The soft cotton sleeve that goes over the leg.  It looks like the cover my mom uses on her rolling pin, except lots bigger.

Short Stretch Bandages - The type of bandages used in lymphedema treatment.  They look like ACE bandages but they're not as stretchy.  You also can't find them at a regular drugstore.  They come in a variety of sizes.  For MA's bandaging I use a 6, 8, 3 10s, and 4 12s.  

MLD - aka Manual Lymph Drainage - the type of gentle massage that helps push the stagnant lymph fluid out of the affected limb.  This can be done by the patient him/herself or by a trained therapist.

Fixing Bandage - a type of loose bandage with velcro at one end, used to "fix" or keep, the foam in place.

Foam - Custom-cut pieces that pad the limb when putting on the short stretch bandages.

Roman Sandal - the bandaging pattern that goes on the foot.

HAS - Heel, Ankle, Sole - the bandaging pattern that follows the Roman Sandal, and follows the heel, ankle, sole pattern of wrapping.

Complete Decongestive Therapy - the process of bringing lymphedema under control, it consists of nighttime bandaging, daytime compression garments, MLD, skin care, diet, and exercise.

Cellulitis - an infection of the tissues in the affected limb.  The fluid is protein-rich (ok I don't really know what that means), and it allows for infection to develop and spread more rapidly than in an affected limb.  It's easily treated with antibiotics if caught early.  If not, it might mean IV antibiotics.

Reid Sleeve - a type of nighttime garment that looks like a thigh-high boot that zips and has velcro straps across the zipper.  Once MA's leg is down to a more manageable size, she'll be fitted for a Reid Sleeve, and we won't have to do the nightly bandaging.

Bandage Roller - A little contraption that screws to the wall, kind of like a pencil sharpener.  It helps roll bandages so they don't have to be done manually.

mmHG (Millimeters of Mercury) - The amount of compression in a garment.  We started MA off with a 20-30 mmHG stocking, now she's up to 40-50 mmHG.  It's hideous and uncomfortable, but soon MA will be measured for a custom-fit compression stocking, which should be easier to tolerate.

Fibrosis - when the tissue stays full of lymph fluid, it actually begins to change composition.  It becomes hard and dense, and has dry, crusty areas.

What the Heck is Lymphedema?

The body has tons of lymph nodes, and as I understand it, they are responsible for filtering out a lot of junk.  The lymph system circulates throughout the body, eventually taking all the junk out up to the heart level and out of the body with the rest of its waste. This explanation probably wouldn't pass a medical test, but it's how I can understand it!  So, for some reason, with lymphedema, the lymph system doesn't work correctly.  Lots of people, especially women with breast cancer, get lymphedema after surgery taking out lymph nodes.  It can affect any limb.  For some people, particularly girls around the age of puberty, lymphedema just appears.  So that's the type Mary Alice has - primary lymphedema.  In her case the lymph nodes in her right groin aren't functioning properly, or there aren't enough to do the job.  She was probably born that way.  She's our kid that has had some weird childhood medical things (toddler anemia, eczema, asthma-like wheezing) so maybe it's all related?  With lymphedema, the lymph fluid just accumulates in a section of the body instead of getting pushed out, hence the swollen leg.  There's no cure, only treatment.  

The Good News Is: It's Lymphedema

So how do you react when the doctor looks at you and tells you that your daughter has a chronic condition for which there's no cure, just management?  Steve and I looked at each other as if to say, "oh, great", Mary Alice got teary-eyed, and we all tried to wrap our heads around the "good news".  Ok, it's not something "really scary" (I didn't even ask) but this????  We had been doing enough research to know that lymphedema, while not life-threatening, is definitely life-altering.  A lifetime of compression garments...ugh.  Oh yeah, Happy Birthday, MA.  The official diagnosis came on her 17th birthday, April 10, 2014.  But this had been going on for months, and looking back, probably a couple of years.

   The swelling in MA's ankle has been happening off and on since she was in 8th or 9th grade.  We always attributed it to soccer - maybe she got cleated, kicked, you know, regular kind of stuff.  The swelling usually went away, didn't seem too painful, and honestly, life gets so busy sometimes that it blended in with other life events.  We mentioned it every time we went for a sports physical, and the doctor never really offered any great advice.  Ice it, try an ankle brace, ibuprofen.  But in January, it got dramatically worse.  Now the ankle swelling became more pronounced.  Another call to the doctor.... Let's try an x-ray and blood work to rule out rheumatoid factors.  Guess what?  Joints look perfect on the x-ray but there's soft tissue swelling.  Oh, thanks, but we knew that!  Soon the swelling began to affect the whole leg...this was getting weird.  We switched healthcare providers to get better answers.  Our new provider was the first person to say the word "lymphedema".   He thought that maybe that would end up being the diagnosis, but ordered a few tests just to rule out other stuff, like blood clots.  Leg ultrasounds, and a CT scan of the abdomen and pelvis were both negative, so off to the vascular specialist in Virginia.  After another ultrasound, and a couple of MRIs (ok, really MRVs, special MRIs of the veins), here we were in the vascular doctor's office hearing about the "good news".  That was the start of this crazy journey we're on.