Physical Rehab-Reinvent-Retrench Part II: The bad news

January 19, 2012 at 9:22 PM (Uncategorized) ()

Ok…so here is another piece of dumb@ss medical freakdom that is a new permanent condition.

Evidently, once you’ve had Hodgkins’ Lymphoma, even when you go into remission you are at lifelong risk for secondary lymphedema.

I always thought the swelling in my legs was due to lousy diet or simple inactivity.

Not so much.

My lymphatic system is blocked or injured or damaged somewhere.

and my legs are swollen with the stuff that system used to be able to flush out completely but now is less effective at doing.

It is incurable and permanent. It can be managed with self massage of lymph node nexus (es?), and breathing and movement exercises.

And those legs have to be wrapped in complex three layered bandages twenty three hours a day.  Every day. Even when they kick on their own in the middle of the night.

Only problem is, in no way can I handle the wrapping and unwrapping myself, with the cerebral palsy.  So a nurse has to come to my house and unwrap them, wrap them and help me clean and lotion my legs.  Once I graduate to compression socks, there is one kind of sock aide that may be able to work with them.

I have to manage my feet like a diabetic might, because wounds can lead to serious, dangerous infections.

I’m at high risk for congestive heart failure. (But, don’t have it now and the heart looks good, via ultrasound )

No more pets.  Too risky (SAD!)

And worse yet, *If * I ever have cancer I have to stop the lymphatic therapy immediately, because the massage becomes a liability rather than an asset, since such behavior could very well make it metastisize.

So white blood counts quite often now.  Quite often.

I haven’t had the post diagnosis meltdown yet.  I’ve felt it necessary to lock that sort of thing down.

But it’s coming.

And I’m asking medical pros and waiting on an answer to this question.

When I had the cancer, many many lymph nodes were inactivated by chemo.

Now, twenty years later as they wind down…I have less than average.

What happens as they slow down processing further and further….

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