Hi, I'm really glad I found this site. My sister was diagnosed in June and has significant kidney impairment. Some days she gets dialysis, plasmapheresis, steroids, and or blood transfusions and some days she doesn't. She has many different doctors including a nephrologist, rheumatologist, hematologist/oncologist and I'm afraid that she is falling through the cracks. They keep delaying the start of her cytoxan treatment. Everything I read refers to the urgency of beginning treatment quickly. Her kidneys are functioning at 12%.
She lives in another state and I'm thinking of making a list of questions and maybe her husband can ask one of her doctors.
I could use help with my list. I'm thinking along the lines of:
why haven't they started the cytoxan? Is she not strong enough? If she isn't strong enough, what are the criteria for beginning cytoxan?
How is it decided if and when she receives dialysis, plasmapheresis, blood transfusions, and or steroids?
Why did she have a severe reaction to her blood transfusion (put her in the cardiac unit)?
Are there any other questions I should be asking?
Or maybe some of this is not unusual?
Any help you can give will be appreciated.
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