She walks! Actually, it’s more like lurching. But the point is, I am up and ambulating under my own power. In fact, yesterday during my first physical therapy session, I made two laps down the hall and around the living room — about 200 feet.
My joy at getting vertical is tempered only by the realization that breathing and moving seem to be mutually exclusive at the moment. Each lap required a couple of rest stops when my sats dropped to 76. I think a good part of my increased breathlessness is attributable to my sloth-like existence during the past nine weeks. My muscles have gotten lazy and, as a result, much less efficient in using the precious oxygen doled out by my cheapskate lungs. My hope is that as I get more accustomed to moving, my breathing will improve. In the meantime, walking to the bathroom is a workout, which means more calories burned and that’s a win in the weight-loss column.
One other development that is already helping with my SOB is a medicine change recommended by the good doctors at Barnes. A blood test showed that I have developed methemoglobinemia, a blood disorder that results when an abnormal amount of methemoglobin is produced. Hemoglobin is the molecule that transports oxygen in the blood, and methemoglobin is a form of hemoglobin that can’t release oxygen. Methemoglobin made up 17% of my hemoglobin — which meant about one-sixth of my blood couldn’t carry oxygen. No wonder my sats rarely rose above 88! I stopped taking the errant medicine (dapsone) and my resting sats have climbed nicely to a consistent 91. I even see the occasional 94! We’ve replaced dapsone with Mepron to prevent a recurrence of PCP (fungal pneumonia). It’s a liquid, which is inconvenient but it’s way better than having oxygen-resistant blood.
I think my family may actually be more excited about my mobility than I am. They no longer have to wheel me to bathroom. In fact, anything within my room is now my responsibility — filling my portables, straightening up, putting away clothes. Soon I will be responsible for getting my own water, and will probably develop a new understanding for why my beverage requests so often elicited groans. It’s okay, though. The more I do, the more I can do — and the longer I can do it.