Lymphedema: It’s about money and liability…and they want to put me away because I live alone…

March 26, 2013 at 5:21 PM (Uncategorized)

The agency who handles my home care nurse (a separate service from my aide ) has been aggressively lobbying to asses my legs.  To get eyeballs on my skin to monitor the bilateral lymphedema.  My nurse did this out of a genuine place….”What if, since you have unskilled eyes on it, you get an infection or a clot or have to go into the hospital?”  I suspect her administrator might have had a few more monetary reasons…because they thought Medicaid would cover this…and it cannot.   I have been leery because last year,  Cleveland  Clinic homecare nurses wouldn’t do it, stating “it’s a liability issue” …but after several kinds of conversations with me, the lobbying by the agency that handles my nurse visits now currently convinced me it was a good idea, the nurse got trained, and I was ready to go….but, they only bill Medicaid.  In addition the community based program  that handles my aide  now says, because the can of worms has been opened,says  “cannot have the aide put on my bandages on the clock.”  In other words they can take them off and wash my feet but they cannot put them back on.

But my lymphedema therapist wants me to have these bandages on daily, and 23 hours out of 24. That would indicate a seamless process.  Take the bandages off, wash the limbs, put lotion on limbs, put bandages back on.So, again, neither nurses nor aides can place these bandages, and I am physically unable to do it myself.

What the aide can put on, compression stockings, are expensive, not covered, and on top of that are ineffective for me.   (the Circ-Aides I do have are expensive, not covered, and effective.  The key difference of course, being the word effective.)

So, either I self pay someone to come out here every day and put these on,  Money I do not have.

Or I cease any sort of bandaging, go back to a mild compressive sleeve until my legs break open from the excess of fluid, exposing me to infection, sepsis, cellulitis…*then* the nurses can come until the wound heals….and I lose the bandaging help again,

Or I give up my life and go into a facility.

I’d rather risk my neck here than some facility so if it comes to non treatment (the mild sleeve) well then it comes to non treatment.



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