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?
Another Carlington knitter delurking to say YES! absolutely you have the right to know what he’s testing you for, and he has a duty to tell you if you ask him. His resistance may be because (a) he’s checking you out for some nasty possibilities, but he doesn’t think you have any of them and so does not want to scare you by mentioning them, or (b) he is baffled and does not want to say so. Either way, you still have the right to know. I say fix him with a stern look and give him the assertive I-know-my-rights drill. You could also try saying that you won’t consent to any more tests until he tells you what they are for…
All the best with the biopsy, and with getting your doc to be more forthcoming.
I kind of agree with jr. I’d want to know. I like your expression “owner of the body, blood and marrow”. You’re very right. Good luck with the tests.
Actually, he HAS to tell you. I wouldn’t let him poke around any more unless he specifies why he’s doing these tests. It’s your body and it’s your taxpaying money that is paying him…..so, you’re his boss.
Go for it Girl.
Those are very useful comments, thank you. Unfortunately I didn’t read them until after I got home from the hospital. I did ask him – as usual – what he was looking for, and he said – as usual – that he was looking for all kinds of different things. So I asked him if he thought the aspiration/biopsy results would solve the mystery, and he looked at me and said simply “I hope not.”
That was kind of ominous.
Deep down I think I’m fine because I’m healthy, don’t have any symptoms of anything, and my weird blood hasn’t gotten any weirder over time.
But anyway. I get the results on May 8th, at our next appointment. At that point I will implement your suggestions.
Jr, welcome to the blog! I love it when lurkers step out of the shadows and say hello.
Next appointment you can pin him to the wall and make Dr. Ominous Circumspect confess. Arm yourself with concealed ostrich feathers to tickle it out of him if necessary.
yes yes and yes
You have the right to know what he is ruling out. What if something happened and part of your file went missing or was misplaced–wouldn’t it help to know yourself what tests had been run and what conditions had been eliminated?
I have weird blood counts too–though I’m still allowed to donate blood. My white cell count is often significantly elevated–it seems to tie into when my arthritis is flaring up (which makes sense, as the kind I have is linked to the function of my immune system).
But when combined with my freakish ability to get extensive and massive bruising without remembering the injury that caused it (as the injury itself was insignificant), has raised many eyebrows since childhood and has resulted in many, many blood draws. It is just assumed to be a side-effect of my arthritis now–but that’s primarily because they can’t find any other reason. LOL
Doctors. They like to needlessly complicate things sometimes. I insist on full disclosure–it’s my right as a patient.
[…] I got my bone marrow biopsy results back the other day from the Mysterious Hematologist. It appears he has ruled out a lot of the diseases he wouldn’t tell me about. Not only that, but he’s pretty sure he now knows what is causing my freakishly large red blood cells. Not only THAT, but he told me what it is. […]
Keep up the good work.