Monday, January 09, 2012

Indolent - My New Favorite Word

I just wrote a message to a friend of my friend, Michael.  In it, I included a quick health recap.  Thought I'd share it with you too, in case you were wondering where things stand.

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.
  1. In one sense, indolent means lazy, lethargic or idle.
  2. When applied to a medical situation, indolent can mean a problem that causes no pain, or is slow growing and not immediately problematic.
Still waiting for a definitive answer.  Still taking it one day at a time.  Feeling really good, very healthy today.

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