Too weak or too strong?

Dr. Alyea put in an order for home-based physical therapy for me because, in addition to weakness in my legs just from being in bed so long, the issue is now compounded by prednisone, which can cause muscle weakness.

Although I am slowly tapering the prednisone, which I've been taking to control mild graft vs. host in my digestive system, my legs are very wobbly. My breathing is OK, allowing me to walk the dog and hit some tennis balls, but my legs feel wooden. When I tried jogging between trees the other days, my legs provided no shock absorption, and I could feel the jarring right up to my stomach. My balance is off; sometimes in the house, I sway into a wall and right myself with my elbow.

A nurse from the VNA came the other morning with forms to sign and questions to answer, followed that evening by the physical therapist, who evaluated my strength and flexibility. The plan called for doing the physical therapy in the house because I can't go to a facility filled with germs.

The nurse was extremely nice, asking me all sorts of questions about my usual day. I told her I split the grocery shopping with Katie, but I wore a mask and just ran in and out. I said I was walking a lot and hitting some balls, and then I told her the problem with my legs.

Keith, the friendly physical therapist, measured my leg strength and flexibility. After each test, he told me that for a young person (I liked that!) I was way off where most people would be. I couldn't resist his pressure: "We have a lot of work to do here," he said. I couldn't bend my knee beyond a certain point. "We have a lot of work to do here," he said. Etc. He said I should get an exercise ball and he would return Monday. He clearly thought the exercises were important, and he understood why I had to do them at home.

After he left, I said to Katie, "In other words, I'm a total mess."

Katie corrected me. "That's not what he was saying at all," she said. "You've come a long way. He's giving you the exercises so you can get even better."

This morning, a nurse from the VNA woke me up with this news: Because I was too active, Blue Cross/Blue Shield would not authorize the PT. She said that because I could shop, walk and play tennis, I could make it to a facility. I said that's ridiculous: I'm not really playing tennis, I'm standing in one place hitting the ball. And yes I'm walking, but it's difficult, and it's OK because it's outside.

She said she'd pass that on. About 15 minutes later, an evaluator from BC/BC called. "How are you today?" she asked. By now I was catching on. "Well, I'm OK but I'm still in bed," I said, which was true. I re-explained to her that I could not go to a facility. I also realized that they had a picture of me running around a tennis court. I repeated that this image was not true.

I realized later that I should never have been so chatty with that first nurse. She was looking for signs of immobility and examples of being housebound. I was trying to give her the more nuanced picture. This of course is small potatoes, and I'm lucky they paid for my major procedures and all the charges that went with a long hospitalization. But still, they should be more open to patients' needs after the crisis has passed. It will save money in the long run. For example, someone like me could feel unsteady and fall, and that would lead to more costs.

A similar thing happened when I first got out of the hospital this spring after being in "the big house" for three and a half months. When I first got out of bed I could barely walk. They wanted to get me out of the hospital, and the first idea was to send me to a rehab facility. Instead, they decided to send me to my sister's in nearby Newton, with visits to the clinic for transfusions three times a week. They put in a request for a physical therapist to come to Diane's house.

The woman came once and taught me some exercises. By that time I could walk a little, so she held my arm while I walked (with difficulty) about half a block, my maximum. I returned to the couch, exhausted. The next day word came that PT at the house was denied because if I could walk, I could get to a facility. They did not seem to understand that I could not be around germs, and that my level of walking left a lot of room for improvement.

The care coordinator and my nurse at Dana-Farber said they would fight it. At that point I could barely get off the couch, and fighting with the insurance agency over PT was not up my alley. So I told them to drop it.

On the phone this morning, the evaluator from BC/BS seemed to finally get it. She said she was confident they would give me at least a few visits to get started, and they would call me back with the final answer. So far I haven't heard anything.

Next time I'll remember to sound my worst and take out my smelling salts.