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Old Wed Oct 23, 2013, 03:37 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi RosP,

I'm sorry that you both have to go through this. My counts were fairly similar to your daughter's when I was first diagnosed. The low HGB is one contributing factor to her fatigue. Although an HGB of 10 doesn't seem that far from normal, I remember the huge difference in my energy level and initiative when at that level. I think that low platelets also play a part in the fatigue, although physiologically I can't explain why. I just remember feeling more energetic (relatively) after platelet transfusions. It could be because the marrow is constantly in overdrive trying to crank out blood cells. It's exhausting! I remember sleeping 13 hours and waking up exhausted.

What genetic abnormality does your daughter have (Fanconi, Diamond-Black Fan, DC, etc.)? It is good that they are taking the time to do these extra tests, although waiting for a definitive diagnosis is tough! If she does go to transplant, the conditioning regimen is very different for Fanconi's (for example) than acquired-AA. Also, it is important to test her siblings to ensure that they don't also have the mutation.

It is hard to think quickly and clearly when your HGB is low. Can you formally pull your daughter out of school for the year to reduce stress, promote healing, and allow for needed rest? The work will be a lot easier when she has more oxygen to her brain! Colleges will understand. Make sure she stays social and active and pursues her passions (albeit less rigorously) to maintain a good mental attitude.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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