Day 250 Post-Transplant

We are entering the eighth month post-transplant and the fourth month under the Coronavirus restrictions in the San Francisco Bay Area. We hope that you and your families all are staying sane and well.

Since my last update, I have completed four weekly six-hour infusions of Rituxan and have begun to reduce the high dosage of Prednisone UCSF prescribed to treat my hemolytic anemia, which was destroying my red blood cells faster than they were being produced. UCSF will continue to monitor my blood counts weekly and titrate the Prednisone. They tell us that we’ll know whether the Rituxan infusions have worked if my blood counts improve and stabilize and my GVHD doesn’t worsen. If not, the next line of treatment is to remove my spleen.

Unfortunately, the combination of Prednisone to treat hemolytic anemia and the antibiotic Levaquin to prevent pneumonia resulted in the rupture of both of my Achilles’ tendons — a rare side effect. After casting my left ankle for two weeks and booting my right ankle as a pivot foot to get in and out of a wheel chair, UCSF has now immobilized both ankles in boots. I can move slowly around the house on crutches, but am otherwise confined to the wheelchair. The plan is to treat the ruptures without surgery, because I am at high risk of infection as my immune system rebuilds. We will re-evaluate the plan and whether surgery is required in four weeks.

We are staying positive, taking one day at a time. Thank you for all our love, prayers and thoughts as we work our way through this marathon.

Watching with hope the nationwide protests against police brutality and racism, our song today is Get Up, Stand Up by Bob Marley.