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Old Mon Oct 15, 2007, 09:04 PM
marc marc is offline
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Join Date: Apr 2006
Location: Aurora, IL
Posts: 11
Hi Krista,
I am glad your counts came back up and hopefully you are feeling better. Without question, this disease can be scary at times, but as hard as it may be at times, you have to stay positive. I know there is a lot of uncertainty at times and like you I had never been sick before, but there are new treatments being worked on all the time. Who knows what they might discover next year. So keep positive, a cure (besides a BMT) might be right around the corner and hopefully we all can put this stupid disease behind us.

I also understand when people don't get why you're so tired all the time. They tell me I look fine but they can't seem to understand the fatigue. It's tough to convince people it's real. Your mother obviously means well by wanting you to keep going to classes, but sometimes you just need to rest. I'm not an expert but I bet it would be a good thing to let your professors know what is going on in case you need a break. Just tell them the facts about AA and how you feel. I'm sure they will be understanding and make adjustments for you if you need to miss a class.

As for the platelets, I average a count betwen 12,000-20,000 and usually need to be transfused every two weeks. I wait until I drop below 10,000. So 24,000 seems like a good number. Obviously you need to keep track of how fast it is falling but I guess my point is, don't panic when it gets low unless you are seeing bleeding issues like Wendy mentioned. But also, don't wait if you feel there is something wrong. Get a CBC.

Lastly, you are your own best advocate. If you feel something is wrong and your doctor isn't listening, then you need to let him know he needs to act. Until they have had AA, no doctor in the world can know what the symptoms feel like. You know your body and when it is not right. If your doctor won't listen then it might be time to find a new doctor.

I wish you nothing but good health and good luck in school.

Marc
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Marc, Severe AA and PNH; diagnosed April 2006; Treated with ATG, currently taking Soliris
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