We had the second meeting with Ana’s new hematologist today. Some good things and some less-desirable things came out of it.
Good things:
- Liver and Spleen scan came back negative for any abnormailities
- 4 or 5 other tests came back negative
- Test for blood platelet antibodies came back positive
- This doctor knows that a 9:40am appointment means 9:40am, and not 11:40am.
He describe, as we’ve known, diagnosing ITP is done by ruling out other causes. Unlike the previous doctor, he is actually actively running tests and ruling things out. As expected, everything is ruling out ITP and getting her prepared for a potential treatment by the spleenectomy.
Not so good things:
- The prior hematologist has had Ana on a dosage of prednisone that doesn’t really follow the recommended treatment pat for ITP.
- She needs to be on a higher dosage and THAT will provide a baseline and determine the next actions. 4 Months of her previous prednisone usage gets tossed out essentially, as far as determining treatment path. That’s depressing.
So she’ll be on the full dosage of prednisone for two more weeks. If her levels go down, it’ll indicate that the steroids aren’t doing anything and she’ll be weaned off them and the next step will be the spleen removal. If after two weeks her counts are stable, they’ll ween her after 4 weeks and keep testing. If once she’s off, her counts drop, the spleen will be removed.
The Johnson Blog 
Comments
7 responses to “ITP Update”
Well, at least it sounds like you have a doctor that is motivated to get to the bottom of the problem.
Thanks for the blog update, Scott.
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What a crazy waiting game!! It is good that this doctor is more progressive and timely!! I just hate to hear that 4 months worth of steriods is down the drain. What are the long term effects of not having a spleen?
What is the down time after the spleen is out?
My prayers are for you guys!!
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So frustrating. You know, I’ve always thought, somebody has to finish at the bottom of the class. And I suppose the same is true in medical school as well. I just kind of always thought those were the doctors you’d find at Prompt Care. Not a specialty like hematology. But I’m glad to hear someone who has a clue is now on the case and that Ana will be well cared for from here on out.
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Maria –
The only real long term effect we’ve heard about is a higher susceptibility to infections. So far we haven’t been told of any details of the spleenectomy, such as down-time and such.
Laura –
We definitely like the attitude and proactive approach this doctor has. The last doctor was an extremely nice gentleman and seemed to genuinely care, but his decisions just left us more curious and confused than anything over the past several months. This is a welcome change.
We thank you for your thoughts and prayers everyone!
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Poor Ana. But there is a good part of this. Pred makes you hungry. Pred leeches calcium from your body. But, ice cream tastes good and puts back calcium. More pred == more ice cream! And because it’s girl scout cookie time, Thin Mint Edy’s is available in stores!
And the lack of sleep? That just means you’ll be closer to Eric’s schedule and will get to spend more time together. (Seriously, does that guy ever sleep?)
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I sleep, quit spreading such lies! Just because you never saw me sleep in college doesn’t mean squat. Liar 🙂
For those unaware, Dave and I were roommates for a year in college. Longest year of my life.
Just kidding, it was fine outside of the constant harassment about not eating fruit. Really.
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Hey, your messed up sleep cycles and dietary habits are fair game, no matter if it’s 2001 or 2008.
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