CMV and Kidneys

Here is Scarlet on Daddy's shoulders waiting for what seemed an eternity for the Nephrologist on Monday.

I didn't mention a lot about the medicine that was affecting her kidneys in the last blog so I'll include it in here.
As most of you know, Scarlet is still fighting a potentially deadly virus, CMV.

It is speculated that the medicine to fight the CMVirus is what caused her to have kidney damage because it is a known nephrotoxic drug, but there is a chance that it could be secondary to her bone marrow transplant. Perhaps another form of Graft vs. Host disease, which she still is fighting in her liver.


So they have taken her off the foscarnet drug affecting her kidneys and now she needs to fight the virus on her own. Which would be ok a year post transplant but she is still on a lot of immunesuppressant drugs that she needs to protect her graft which prevents her from fighting illness on her own.

The transplant doctors never told me that it is difficult to test a baby's kidney function based on creatinine levels. The nephrologist at Children's was the one who told me that the blood levels they take in children are deceiving because of muscle mass, etc. She told me that in children the creatinine levels aren't affected until a 60% kidney loss. I was a little upset with the transplant team because, somebody should have told me this. Someone should have told me that there is a 25% chance of kidney disease in transplant patients. All I've ever been told in the past was that foscarnet may affect her kidneys, and the way they said it was that it was unlikely. They tell me that CMV is a greater danger to her than kidney failure, that it is better to sacrifice one part of the body to save the rest. Who can argue that? But I really don't want her to have to go through a kidney transplant in addition to everything else she's already gone through.

I don't want anyone to think that I think badly of the transplant team. They are amazing and what they do is amazing. They do their best to save lives and they really care about each patient. I can still walk into Children's hospital where Scarlet was for 6 months and the doctors there will know about her. Without them Scarlet may not be here. We owe everything to them and God for keeping our baby here with us.

Sorry, this was a big chunk to leave out of the other blog but I had Scarlet in the office with me and didn't have a lot of time. She is becoming so much fun, she loves to laugh and giggle, play peekaboo and is learning all the time. I can't express to you the joy she is to our lives.

Please keep praying for Scarlet.