............than we already did. Except:
Both of her kidney's have cysts on them.
He's pretty sure her diagnosis is Polycystic Kidney Syndrome; here's what we learned about that: there is no cure; a kidney transplant is in her future (probably not until she's in her 20's-40's); it's 100% genetic, so Liz (or the donor) probably has it, but none of her family has mentioned it. My thought is that if neither of their family members (parents, grandparents, great-grandparents) have kidney issues, then how could it be that? The ONLY way to get it is from a parent. Anyway, he said he was just a surgeon and this was out of his league; there is nothing wrong with her that can be corrected with surgery right now.
So, he's sending us to a neuphrologist in Oklahoma City (about 2 hours away). He said that we will need to get used to Dr. visits and Ultrasounds as they will want/need to keep close tabs on her kidney's.
So, we wait again. Probably another month before we can get in to see the neuphrologist.
Big Sigh!!!!! :(
9 comments:
Crap. I'm sorry. Both for the diagnosis and for the lack of further knowledge.
Hugs.....
I am so sorry :-(
I am glad she doesn't have to have a transplant until later in life. But i know this is still difficult for you all. We will be thinking about you three.
Sorry to hear that. I hope they have more answers for you soon. {{{hugs}}}
Steph-
I'm sorry to hear this, I was hoping to see better news. I can understand your frustration. Being there with MacKenzie makes it more real. If she comes back positive for Celiac Disease, I to have to be tested because it is either from me or him. With the kidney issue we know that it had to be from him since 2 children from him had kidney issues. And to think that nothing was mentioned by him....maybe he didn't know. I'm sorry again.
Crystal
I am sorry... I wish you could get some more answers. Maybe when you go to Oklahoma City you will.
*hugs*
I'm so sorry. This must be so hard on all of you. Hopefully you can find out more answers soon.
Oh no! I am so sad to read this news. I am so sorry - my heart aches for you as you try to find answers.
Hugs.
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