I have avoided blogging as I’m afraid of my own thoughts. Things are not going great. No happy news to report. Yes, she’s doing a tad better–but it’s all so temporary. Everyday brings new challenges and fears. But I really have to get something off my chest. I cannot keep my mouth shut any longer.
To say I’m disappointed in the whole kidney transplant process here is an understatement. I’m frustrated with the lack of urgency in testing my living kidney donors. See, docs want my daughter on kidney dialysis. I, on the other hand, have resisted for several reasons. It has been the understanding of the doctors that I want to get her to transplant without dialysis. Do they agree, no…but they said it could be done.
Well yeah, it could IF people did what they were supposed to do. Seems the transplant coordinator and I are not using the same clock. If I don’t follow-up with her, it doesn’t get done. I don’t make these allegations lightly. This has been a recurring problem.
So yesterday I got the courage up and documented all of my frustrations. Reread it about 50 times to make sure I stood behind everything I was stating. Then I photocopied the two-page document, handed a copy to a doctor on the kidney team and placed another copy in the front of my daughter’s medical records.
Please understand I have not for one moment questioned the doctors’ abilities. However, I will not tolerate ANYONE playing God with my daughter’s life. Period.
I will update everyone when I can. Thanks to the hundreds of friends and family who have gathered around me and my daughter to support us through this most difficult time. I am truly blessed.