Aug 292012

Mike has swollen legs due to lymphedema.

I have swollen legs due to lymphedema.

My inclusion body myositis has one very significant secondary illness associated with it – chronic lymphedema in the lower legs. I cannot stand or walk so there is no movement of my leg muscles, and because my muscles are atrophied they are not available to help the natural process of pumping fluid back toward the heart. Over the years as the problem became worse I have tried many strategies for keeping it under control. I also have had to devise a variety of types of footwear to accommodate my grotesquely swollen feet.

About a year ago, the problem became so severe that I began having open sores on my lower legs which would drain large amounts of pinkish fluid. One night it was so bad that I woke up to find the entire lower half of my bed soaked with liquid.

The openings that this drainage caused became serious full thickness wounds and required me to spend many hours at the hospital getting them treated and wrapped.

Because I was still trying to live independently, the most recommended treatment – compression garments – was not a good option, as neither my wife nor I could put them on. As an interim measure, an orthotist whom I had seen for my crooked foot suggested that he could make braces that would apply pressure to help reduce the swelling.

Wearing them, along with following a regimen of elevating my legs at night and for at least an hour each day, have kept the lymphedema from becoming as severe as it was last year.

Ingrid and Teresa from CircAid Medical Products measure my legs for compression garments.

Ingrid and Teresa from CircAid measure my legs for compression garments.

However, once I moved to Huntington Manor assisted living and had care available around the clock, I realized that I could look into the next option of compression garments.

After speaking with two of my doctors and doing my own research, I found a company located nearby, CircAid, that makes a type of compression garment that could be much more easily put on than the standard compression hose. (Even caregivers complain about compression stockings.)

Last week I was measured for one of their products and they will be bringing me them later this week. Once I have worn them for a while I will report on their effectiveness, although I am expecting good results based on what I have read.

  4 Responses to “Tackling Lymphedema – Part I”

  1. Mike, you have so much cour5age! I am sure you encourage others.
    Blessings to you and Beth.
    It was 8 years ago that we saw you and Beth.
    Jim is now homebound with Alzheimers-Lung problems-Diabetes- etc. His mind is failing rapidly. Really doesn’t remember much of anything. It’s hard to see a brilliant mind deteriorate to nothing.
    Joan Dee

    • Thank you, Joan Dee. I am very sorry about Jim. I can still remember that booming voice when he would enter the living room at one of the parties on Webster Ave. My wife, Beth, has nearly vanished, but we can’t find a diagnosis. Some kind of dementia? Late onset schizophrenia? Lots of tests and medicine trials but no answers.

  2. Hi Mike,
    Just a note to let you know that you and Beth are ever in our thoughts. I check your blog every once in awhile, and am still amazed at your creativity and resourcefullness!My brother, who has multiple post-polio syndrome problems, was in the hospital for two weeks after surgery and is beginning to recover some of the strength he lost from being in bed for so long. Like you, he has a zest for life and is determined to get out and about in his electric cart again….portable resperator and all!
    With love as always,
    Diane and Jim

    • Thank you Diane and Jim. Post-polio has a lot in common with IBM, so I understand his struggle and admire his positive attitude. Hope to see you and Jim at Huntington Manor one of these days. Plenty to paint around here.

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