Thread: New to AA
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Old Mon Aug 20, 2007, 03:42 PM
Lisa V Lisa V is offline
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Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
Donna, writing down her counts is good, but they should be able to give you a print-out if you ask for it. Much easier, and you may find it helpful to keep a chart or spreadsheet to track A. Jae's progress. That will give you a feel for how quickly things are changing, if they are.

For AA, the counts we usually look at are Hgb (hemoglobin), Plt (platelets), WBC (white blood cells/count) and ANC (absolute neutrophil count). Hgb is about the only one you can really "feel", since it measures the oxygen carrying capacity of the blood. Normal range for Hgb is 12.5 - 18.0, but many AAers are able to adapt to lower levels and function okay with 9 or 10. It's an individual thing, but they usually will transfuse if it gets down to 8 or lower.

Normal platelets are 130 -440(k), but if you have at least 50k you are considered pretty "safe" from most bleeding issues (except in the case of severe trauma, which is not safe for anyone anyway). The usual tranfusion target is 10k, but some people find that they can let it go even lower without problems. Others have easy bruising and petichiae (fine red spots) at higher levels, so those are things you have to be on the lookout for.

Normal WBC is 4.8 - 10.8, but again, it is possible to adapt to much lower levels, as long as she's not having problems with infection and illness. The most important component of the WBC for AAers is the neutrophils, since they are the prime infection-fighters. Lymphocytes fight infection too, but they are also thought to be the culprits in AA, having launched an autoimmune attack. The usual immunosuppressant treatments for AA (ATG, cyclosporine) are designed to knock out certain of the T-lymphocytes and keep them from destroying the marrow's ability to manufacture stem cells. They don't target the neutrophils, so as long as there are sufficient numbers of them, the body should be able to handle most things. Different labs record ANC differently, and you may have to add the segmented neutrophils and the bands to arrive at the number. The normal range is 1.8 - 7.5, but again, many people can get by with less, you just have to monitor the incidence of infections. You don't want the ANC to get below 0.5. That is known as severe neutropenia, and may necessitate wearing a mask, avoiding crowds, eating only foods that can be cooked or peeled, etc.

When you say A. Jae's white counts was up, do you mean up from when they first measured it, or higher than normal? If it's the second, it doesn't sound like AA. Too many white cells are more associated with some forms of MDS and leukemia.

Hope this helps. One thing we've all learned is that while "normal" is the goal, "not normal" doesn't have to mean you can't have a normal life. You just have to monitor at what level problems start to occur. That's why most doctors don't recommend any treatment for MAA, since quality of life is not usually significantly affected at that level. I'm assuming A. Jae is not having to be transfused at this level. The main goal of ATG and other treatments is to become transfusion-independant, so it is usually not recommended until it becomes SAA or vSAA. I know it's hard to sit around and do nothing and wait, but there is a lot of that in AA, so it's best to come to terms with that.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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