I have immature blood. Seriously. We all have our little oddities. Megan, for example, has a freakishly small head. Me, I have immature blood.
A few years ago, after my annual checkup, my doctor called to tell me there was a problem with my routine bloodwork. She didn’t know what was causing it, but I have these great big funny-shaped red blood cells.
Contrary to the way most things work, red blood cells start out big and get smaller as they age. Mine are all big.
Being the positive ray of sunshine I am, I just figured I had nice big blood. Being the doctor she is, she figured something was killing off my red blood cells before they could mature.
So she sent me for tests – a bunch of blood tests, an abdominal ultrasound, an EKG – and they all came back fine.
Phew, I thought, I’m healthy and I have refreshingly young blood.
That’s not what she thought. She thought she should refer me to a hematologist.
So I’ve been seeing this hematolgist for about two years now. Every few months he takes a whack of blood out of me and runs a bunch of tests and tries to solve my medical mystery, but so far it continues to elude him.
Two weeks ago he decided it was time to escalate my immature blood to more invasive kinds of tests. Tomorrow I have to go to the hospital for a bone marrow aspiration and biopsy. He says this test will give him more information. A complete CT scan has been ordered too. Just so he can have more information.
I like him, I really do. But we do this crazy dance around information-and-theory-sharing. He does NOT like to tell me what he’s looking for. If I ask, he says “Oh, don’t worry, I’m just ruling things out.”
But as the owner of the body, blood and marrow, I feel I have a right to know what he’s thinking, what he’s suspecting, and what he’s testing for. I tell him that. He says he doesn’t want to freak me out by mentioning disorders that might sound alarming, especially since he’s just ruling them out.
Well yeah, but one of the unfortunate consequences of having unexplained immature blood was that – based on a letter from my hematologist – I was permanently kicked off the Unrelated Bone Marrow Donor list AFTER they found someone who needed my marrow. The odds of finding an unrelated bone marrow donor are not good, so that poor person may well have died because of my immature blood. This makes me think I probably should be worried.
Anyway, at one point I threatened to take the blood requisition forms home and google every test on them to find out what he’s up to. He looked stricken and urged me not to do that. He said he’ll tell me what’s wrong once he knows, but there’s no point in me worrying about every possibility along the way.
We’ve been doing this for two years now. He keeps trying to keep me from knowing, and I keep trying to know. (And I have taken the forms home and googled all the tests, but dammit, you’d have to be a hematologist or something to understand all that stuff.)
So. What do you think? Do I have a right to know what he’s speculating, or does he have a right to keep it to himself until it’s not just speculation? And if I do have a right to know, how do I get him to tell me?