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Old Sun Sep 4, 2022, 06:56 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Mola-tecta,

Your mom's counts look really good. I'm so happy for you both.

Regarding her nutritional status...yes, you will have to keep an eye on it. Having a baseline of her nutritional status prior to treatment could be helpful. They should have, at a minimum checked her D, B12, Folate, iron and Copper. So if you know that information, you can look at it and compare it to what they checked when she was in the hospital.

There's a good chance it's a combination of both, prior insufficiencies and then the treatment/medications. Her nutritional status could have been in the low-normal range or sub-clinical levels. A low-normal B12 serum is suspect when having blood or neurological issues. But since it's "normal" most won't look any further. Add to that, all the medications and she was bound to be nutritionally compromised.

John's nutritional status was in the dumpster too. The medications took a toll on him. They told us the antibiotics, antifungals and antivirals could cause issues and they did. And when you are in recovery, your body needs more help.

If she's eating well, I suggest follow up testing to check her nutrients to see if her current diet is sufficient. You want to get things into an optimal range and if she can do it with food/diet, even better. It usually takes a couple of month to restore things. We included supplements along with a good whole food diet. You can get nutritional testing done outside of the medical system. It's out of pocket though.

I too find it hard to believe that her doctor had no interest in working with her. It happens all too often, especially to the elderly. I guess I shouldn't be surprised though. John's recovery once we got home was on us. We got the standard, eat a balanced diet, get some exercise and give it time. While there is truth in that, it's still lacking on many levels.

Hang in there!
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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