It would be an understatement to say that Steve has had some tough luck over the past few years. With critical illness myopathy following a life-saving open heart surgery and a nerve injury occurring during a fistula surgery, Steve has only one functioning limb - his right arm.
The rest of his body is coming along gradually, and Steve has clearly made progress. But he is far from ambulatory. The last time Steve walked was when he walked into the hospital in March 2010. He is working very hard to regain his physical capacity, and can now stand for limited periods of time. Fighting muscle atrophy - when muscles cannot be used - is rugged.
Don't get me wrong; we are immensely grateful that Steve is alive at all! I think most people would have died at many of the critical junctures Steve has experienced.
When Steve's rehab physician ordered an electric wheelchair a few months ago, we all thought it would be a slam dunk. One functioning limb, after all.
But amazingly, Medicare denied the request! We gathered another letter of painfully obvious medical documentation. Medicare then had thirty more days to consider and deliver their decree.
In Steve's situation, thirty more days of uncertainty and delay seemed practically criminal!
But we heard today that the request was finally granted. With any luck at all, Steve may see that candy-apple-red electric wheelchair tomorrow! It will make life much easier for him - and for all of us - at home. And can you imagine what it will be like in a movie theater or mall? Costco, here we come!
This week has been particularly challenging for Steve in that he had his Peritoneal Dialysis catheter surgically placed into his belly just over a week ago. No matter what the procedure, it takes at least a week for Steve to snap back into his compromised normalcy. It must take a while for the anesthetics to really clear - or maybe it's the narcotics. Steve is known for his vivid drug-induced hallucinations ("Are these fish swimming up my back?")
Peritoneal Dialysis training begins when the site is fully healed, and is scheduled for the second week in January. We are hoping this will offer a new beginning - with an easier technology that is not dependent on the fragile fistulas.
And if all this excitement wasn't enough, Steve gets an in-home hair cut tomorrow!
"How does he want it?" asked the hairdresser.
"Something in a Dick Cheney cut, perhaps," I said of my devout Democrat. "Just clean him up so we can take him out for Christmas!"
And taking him out in that brand new candy-apple-red chair will be a milestone gift for all of us.
Take care,
Linda Gromko, MD
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