Day 145: Happy Belated Chinese New Year!

The last 45 days have been filled with tests and doctor appointments. The results of my bone marrow biopsy and blood tests are very good. My blood DNA is now 99% donor origin without detectable genetic mutations. I am “almost all girl” according to my doctor — my donor is female. All of my blood counts are in normal ranges, except for hemoglobin. Hemoglobin is expected to continue to lag behind the other blood counts because the fibrosis or scarring in my bone marrow does not leave much space for the donor stem cells to reproduce. We hope to soon see the donor DNA reach 100% and my hemoglobin to climb from the 9.5-10.5 range to above 11.0.

Despite the good test results and the passage of the 100-day mark when I was finally permitted to venture out to public places, symptom management has been challenging. Consistent nausea has made eating difficult and I've lost 30 pounds. After adjusting medications and taking biopsies during an endoscopy, UCSF has determined that the source of the nausea is likely stomach inflammation caused by graft-versus-host disease (GVHD). GVHD occurs when the donor T-cells attack the recipient’s organs as foreign tissue and is relatively common after transplants. UCSF started treating me last week with Prednisone, the standard anti-inflammatory treatment for GVHD. The results are promising so far. The next hurdle will be to balance the dosage of Tacrolimus, the standard immunosuppressant for transplants, with Prednisone to ensure the donor stem cells remain productive while the GVHD is being treated.  

I have also had severe left shoulder pain that UCSF determined is caused by “frozen shoulder” where the capsule encasing the shoulder joint becomes inflamed and immobile. Last week, I received a cortisone injection, which has reduced the pain and allowed me to sleep. Full recovery could take up to 18 months!

Being able to eat and sleep once again has been a huge relief and has helped keep me focused on the good test results and envisage the finish line in this marathon chemistry experiment. We knew it would be a long, long haul and are staying positive and strong, taking one step at a time. I have resumed hiking the forest trails behind our house and look forward to getting out to see more of family and friends soon.

Here is a picture of the family with Tyler’s girlfriend Olivia; our song for today is “I Can See Clearly Now” by Johnny Nash. Thank you all for your support!