[evansmom]

Good plan Jody.

One thing I alsways mention when I hear of an AA'er who had been transfusion independent and then suddenly shows up with a super low Hgb as Trevor did, in the 60's, is that there can be a rare but serious complication from cyclosporin (and tacrolimus) that can result in damage to the tiny blood vessels, especially in the kidneys and eyes.

The med causes injury to these little blood vessels and in an effort to fix them, platelets and fibrin go to the damaged areas. As a reult, there ends up being tiny little cross fibres inside the blood vessels and as the blood is travelling through them, the red cells get sliced in half, causing a rapid decrease in red cells and hgb (as opposed to his AA getting worse). I would inquire about this today as if Trevor has this, and that's only an if, it can be very serious.

It's called calcineurin inhibitor(AKA cyclosporin) related microangiopathy and the flags for it are red cell fragments (schistocytes/bitten cells) in the blood smear, urine positive for hemolyzed blood (will be tea coloured - ask Trevor) and a very high LDH.

Did you not mention previously that Trevor's sight was going bad? If not, I apologize, it was someone else.

Anyways, not to add to your worries, but what I described above is very rare and it may not be what's happening here but if it is, unfortunately many doctors don't recognize it until too much damage is done. I know this first hand as Evan experienced this himself and we had a very scary few weeks because of it.

Hope you get some where today, I know it's very challenging being involved in Trevor's care in this situation.