Wednesday, April 18, 2012


The top of my head just blew off! I had sent my daughter's nephrologist a question pertaining to a kidney test that is standard at the Center of Excellence for kids like her and she replied back saying that we already know my daughter's kidneys are damaged and knowing the result of the test wouldn't change the course of treatment. Sounds reasonable right? Well, she said...

..."since she has hydronephrosis on the ultrasound, since her kidneys look bright on ultrasound suggesting there is damage and/or scarring inside of them, and since her BUN is higher than it should be for her age (suggesting that she has lost the overall reserve in her overall kidney function)."

A few weeks ago, during Jie Jie's follow-up after the first ultrasound came back, I asked her to define "reserve" and what she said is that a person can live on 1/4 total kidney function, meaning one whole kidney can be non-functioning and half of the other kidney can be non-functioning and a person can still live well. After this "reserve" is gone, one must resort to things like dialysis to live if one loses further kidney function.

She didn't indicate that my daughter's condition was this severe! She didn't indicate that my daughter's reserve was used up. I am terrified that she is using the words "overall reserve in her overall kidney function."

I have emailed her back requesting clarification of her statements, in percentage of overall kidney function, so I can get, in writing, just where she thinks my daughter stands.

This is super serious because if the underlying condition that damaged Jie Jie's kidneys cannot be stopped, she will NOT be eligible for a kidney transplant in the future. This Friday's ultrasound will show if the treatment has been successful or not.

If the doctor emails me back and says it's not as bad as I'm interpretting it, I'll be relieved, but absolutely furious with her for her choice of words.


Anonymous said...

Oh my, I really hope its not as bad as this post sounded. Major praying!

Princess D said...

Not good for mama to hear. I hope she had misspoke!