[Hopeful]

Hi Matthew42,

Although switching doctors is daunting at first, it is great the your mother's doctor is referring her to NIH and will use their expertise in guiding her treatment.

Once established (with an initial consultation/tests), I have found that specialists will sometimes consult remotely with local doctors and the patient via email/phone as necessary. This is nice if travel is a concern.

1200 for absolute neutrophils is excellent!

Let us know how the consultation goes.

Hi Mole-tecta,

I would question your mother's doctor on the platelet transfusions. If her clotting factor is good, then the tradeoff must be made on whether it is worth the risk of her becoming refractory to platelets for the benefit of a few days at a slightly higher number after a transfusion.

People can become refractory to platelets at any time and with no warning. If refractory, the transfusions will stop giving her a rise, which is not a good thing if she develops an infection and really needs the platelets in the future. This has happened before to people on this forum. My doctor was always nervous about this risk when I was platelet transfusion dependent.

Having your platelets stick above 20 is a transfusion-free milestone after ATG.

It could be that your mom has standing orders for platelet transfusions at the lab, and that it is up to her to say whether or not she wants them. It is worth being proactive and reaching out again to her doctor to see if she should try stopping/delaying the next platelet transfusion and check whether they are holding above 20.

Best of luck to you both! It sounds like things are going in a good direction.