Written by Patty Poston, ADVANCE Patient Investigator

The pain is ever present.  The feeling, or sensation, is strange.  I don’t remember exactly when it began, sometime during late summer of 2016, with swollen toes and some tingling.  I was planning a trip to my doctor when our winter weather hit.  We usually don’t have much snow, but the winter of 2016-17 just had to be different.

In April 2017, I had an appointment with my doctor for routine stuff–new prescriptions for the year and such.  After going through my list of needs I told him about my knee.  I thought it was just another gout attack except in the knee this time. I could hardly walk and the pain was horrible.

“The knee feels weird, as if there is a large cushion of liquid between the femur and tibia, and it sort of slides around before finding ground for the next step.  My left leg is very swollen and feels strange.  The toes and half of the ball of both of my feet are swollen all the time, very warm to the touch, and yet the soles of my feet feel as if I’m walking barefooted on a sheet of ice.  It’s some of the worst pain I’ve had in a very long time.  Several doses of 500-mg Aspirin each day hardly touches it.” Now, some of you would have copped to going to the ER about 3 days into that pain.  Perhaps I should have, but my co-pay is quite a bit higher for ER than a regular doctor’s visit. What’s a few dollars you ask?  In my case—a retiree’s fixed income– the difference is between $10 and $50.  I can afford the $10, but I have better places to spend the other $40 than an ER visit.  After all, there was no blood or broken bones.

He said he wants to take a look, so I pull up the pant leg and take off my shoe and sock.  I think he looked at my foot for all of 30 seconds before he said, “This isn’t a gout attack, you have Lymphedema (LE).”  He then referred me to Physical Therapy (PT).

Oh great, lymphedema–another item to be added to my medical resumé.

Since I’m no stranger to online research, I visited several medical websites and learned quite a bit in a very short amount of time.  My online research said LE means my lymph nodes are not functioning, which means all of those body fluids that should be processed and eliminated from the body are getting backed up.  Gravity plays a big part by having those fluids gather first in the feet then proceed to fill up the body. And since our bodies are not encased in a hard shell, we expand (or swell), sometimes a lot.  LE is also an auto-immune response, which are not new to my body.  My LE diagnosis just made my list a little longer.

I always have a list of questions when I go to my doctor.  I brought my list to the first, and every, PT appointment thereafter.  I’ve had PT a couple times before for injuries. No, it wasn’t bad, but this time it was very different.

There is an old saying about “walking a mile in my shoes”.  It used to be so easy.  However, another old saying goes something like this:  “About the time I knew the answers someone changed the questions.”  Nothing could be truer.

My first PT appointment was easy, as we discussed my medical history (already available to the Physical Therapist via MyChart), my legs were measured in several spots, both length and circumference, and we discussed what the treatment process would be. I was sent home with a multi-page printout of what the therapy is, what to expect, and what I needed to buy before my next appointment.  The treatment is a daily wrapping, with a set of special bandages.  Nope, the bandages were not covered by my insurance (my needs cost about $100)–not a nice thing to spring on my budget because it wiped out all of my available ‘fun money’ for the month.

As it turned out, I only needed to wrap from toes to my knee.  I was able to do my own wrappings—no caregiver needed.  I learned some people must wrap from toes to groin, possibly their upper body, even their full arms and hands.  Talk about a mummy’s life.

The wrappings consisted of 6 layers of several different materials—a gauze-like strip to wrap just the toes, the bandages, foam, cotton fluff, a stockinette.  They all get spiraled up the foot and legs, overlapping all the way.  They are designed to help the compression tighten slightly throughout the day while you walk, do your chores around the house, shop—everything, 23/7, for several weeks.  They are removed daily for bathing, and then “immediately” re-applied.  “Immediately” for me took between 10 and 30 minutes.  It got easier as I did the wrappings over the weeks, and quicker if I didn’t have to chase a run-away roll.

The results were amazing!  I lost 10 pounds of water weight from my left leg in just one week.  However, I was always very thirsty, and had a constant taste in my mouth as if I had just eaten a lot of a very salty food.  Sodium, or salt, comes at us in large quantities all the time. Cheese is a seldom treat and bacon is now off the list.

Of course, if you are going to lose a lot of liquid from your body, you are going to be “going” a lot too.  That’s one of my new “constants”.  If I have a day when I don’t have the urge to go enough, then I know I have not had enough water that day and need to step it up.  Surprisingly, the more fluid you take in and put out helps keep the swelling down.

I learned of a website, LymphNet.org, which is full of excellent articles, videos and information. I learned LE affects ten million people in the U.S. alone–more than Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s Disease and AIDS combined. Hundreds of millions more are affected around the world.

Before I could get into the stockings, I was scheduled to meet with a trained, certified Fitter.  My right leg was only wrapped for a couple weeks before it was well enough for a stocking too.  I like the stockings very much.  They feel good on my legs, my legs feel great when I’m wearing them, and the swelling stays down to a level I can tolerate well.

My insurance will cover a couple pairs each year, however, I will need to rotate out my older stockings every six months, as the compression begins to lose its strength.  It won’t be easy, but this is not a fashion statement.  This is about my life.  The stockings are not cheap and I will need to buy a pair every month for several months to increase my wardrobe.  After all, do you have only 2 pair of socks in your drawer?

This need for several additional pairs has caused me to re-evaluate my entire budget, cancel or change a lot of monthly plans quickly—small things such as a monthly lunch with a friend is now a coffee stop instead, and no ‘extras’ in the grocery basket, just the basics.  Until I have a bigger stocking wardrobe, I must hand-wash daily.  It would be too costly to wash and dry one pair a day in my building’s coin-op machines.

My pain and swelling is still there, in the toes and balls of my feet, every day, all day, all night, but it is less in the morning and when I do my LE exercises.  In PT, I learned the value of slathering my legs with Eucerin Lotion before wrapping, and I was instructed to continue to slather both legs every night before bed.  When I go out, I have a full tote bag because I must carry a pocket-size first aid kit (bandages, ointment, gloves) at all times, a bottle of water to keep hydrated, and healthy snacks to keep my energy up.  I must be careful at all times.  Anything that could cause a scratch, even a papercut, could become infected—and that could be very dangerous—ending with oozing sores, or even amputation.

I must wear gloves to apply my lotion, wash my stockings by hand, and wash my dishes and other cleaning tasks anytime I think I might need them.  I never walk barefoot–I can’t afford to step on something that could break the skin of my feet.  I don’t intend to take chances.  I like living too much.

Lymphedema is a disease, but I am not contagious.  It is incurable, but it is also manageable.  I am still learning about it.  It is taking some time to regain my stamina–I am still not back to “my normal” yet.  Life goes on and I am living mine as full as I can.  A recent trip to a u-pick blueberry patch was a lot of fun and I will enjoy my one hour of efforts all winter.

In June 2018, if the OCHIN Patient Engagement Panel presentation is chosen, I will be traveling to Baltimore, Maryland from Portland, Oregon, to attend and present at the Institute for Patient- and Family-Centered Care (IPFCC) Conference.  It will be interesting to learn what I need to do while making that journey.  I will need to pack my wrapping supplies in my carry-on bag, just in case.  Flying causes our legs to swell anyway.  Mine might become overly swollen.  I may need to ask my doctor what documentation I will need to explain my situation and needs.  After all, some people might get upset if they see me pacing up and down the aisle more times than the flight attendant.  And then there are those frequent restroom visits…

Thank you for reading about my Lymphedema experiences so far.  It’s going to be a very long journey, but didn’t someone say that every journey begins with the first step?  Well, I’ve taken it.  My road is just a little bumpier than it was before.

 

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