Rituximab

Another crazy heart-wrenching week. Heather continues to struggle with her breathing and kidneys. She sleeps alot and I try to make sure she is comfortable. Drugs are a good thing though I know Heather would prefer not to use them. She needs to rest and if it means with some help, it means with some help. Talking to the nurses, she won't get addicted. Once she is out of pain and discomfort, she won't want the drugs. She is very worried about it.
The source of her troubless seems to be TTP, a blood disorder where the b-cells of her blood destroys the red blood cells and platelets. This is causing kidney failure and the lungs to struggle to recover. It is a very difficult issue to treat as it is rare in and of itself and even more rare for transplant patients. Therefore, limited research has been done and no known truly effective treatment. We are trying to use a immune-suppressent drug called Rituximab - a chemo used frequently for leukemia patients. It has been used 5 times before on transplant patients and has shown some success. Really not any other options. Rituximab attacks the B-cells and the hope is it will allow her body to reset itself. Then we can attack the kidney issues and try to heal her lungs. We continue to move forward on starting dialysis again. Prayers are always helpful.
I also think God talked to me today as I have been really struggling to hold onto hope and positive thoughts. Being part German, I can get stingy and don't like to waste money so I asked to have the oxygen equipment taking out of the apartment as it is costly to have. Especially knowing it will still be a while for Heather to get out of the hospital. The company called me yesterday to schedule a pick-up but I missed the call. Tried this morning and they said that they has no order to remove?! I believe God is telling me to hold on a minute - she is going to need it whe nshe gets back. I do believe this so keep the prayers rolling. Heather is going to prove everyone wrong again and beat the odds!!!

Jim