When I initially got the diagnosis, I sent a message to that effect to my hematologist who had not heard of it. Her colleague was out of the office but she was going to check with him upon his return. I asked her what she thought was the best way to go about finding someone in hematology who had experience with this. I knew from my own experience that calling and leaving a message was a waste of time. I also asked about the referral for the bone marrow biopsy. She agreed no one was likely to call back but stated again she would check with her colleague upon his return in the next couple of days. I responded back that, in my mind, it seems unlikely that I would find anyone with a lot of experience—it’s a rare disease. So if hematology/oncology is familiar with Rituxan, why couldn’t we just get the regimen from the PA doctors and do it here? And I asked again about the bone marrow biopsy since she hadn’t addressed it in her previous message. And I had to ask her a THIRD time before she finally responded that she would submit the referral. She also referred me for a PET scan and additional lab work.
Lori W 1 Minute
Published by Lori W
After a year of mysterious symptoms, I was diagnosed with a rare kidney disease. Little did I know that would only be half the battle. View all posts by Lori W