Hello! I'm sorry to have disappeared for awhile. I knew you were going to be away until around 10/10. I wasn't feeling well then & in mid-October, I ended up in the hospital for an infection & had to have my third bone marrow biopsy.
They were saying they thought the problem w/my immune system was getting worse, moving from Neutropenia to Aplastic Anemia. In November, a specialist at Stanford said I would probably need a bone marrow biopsy. I FREAKED OUT.
We had family here for 10 days around Thanksgiving. During their visit, on 12/1, I flew to Seattle to see a hematologist who has spent 40 years studying what he called my "special hematological condition." He said even really well-trained hematologists don't understand it because it is so rare. He said he didn't think I was getting Aplastic Anemia & didn't think I would need a bone marrow transplant. We were hopeful.
Then, he sort of disappeared for awhile. We're still waiting for him to contact my local hematologist w/conclusions/recommendations. I did hear from him, about a week ago. He said he'd reviewed everything & asked which doctor he should contact. (He also asked if he could have another doctor look at my bone marrow biopsy slides but didn't say why. Of course, I gave consent.)
So, hopefully, things are alright. In early December, the Seattle specialist said Neutropenia still appeared to be the dominant problem. He said he thought I may have something called LGL Syndrome (Large Granular Lymphocyte Syndrome).
When I shared this with my local hematologist, he said, "Oh, yeah." "They think you do have LGL." I was surprised, as this wasn't something I remembered hearing before. We looked back at the report from my first bone marrow biopsy, from September of 2009. It said, these findings point to the differential diagnosis of LGL; however, these things, including the absence of large granular lymphocytes argues against this diagnosis.
My primary care physician has a called LGL a "chronic indolent blood disorder." While I'd rather not have a chronic blood disorder at all, indolent is my new favorite word.
The word indolent has two meanings, both related.
- In one sense, indolent means lazy, lethargic or idle.
- When applied to a medical situation, indolent can mean a problem that causes no pain, or is slow growing and not immediately problematic.