Well, sadly, we know nothing more. In the Dr's words, she remains a mystery to them and for that reason, she has become of special interest. She will see the Urologist and the Neurologist each every 6 months, which if timed like they'd like, is a trip to the Dr every 3 months and an ultrasound before each appt.
Both of her kidney's are affected, which would normally confirm PKD, but since the right kidney has only one large cyst and a couple of small ones - which is not the norm for PKD, usually both would be covered - they are starting to think it's something different. He told us that they have a list of possible causes and conditions, one of which would be that her left kidney would start 'eating' her body and have to be removed ASAP. At each visit, as they monitor her kidneys and liver for size, shape and the amount of cysts, they hope to be able to start ruling some of the conditions out.
So, the jist of it is .............. we may not know definitively what's wrong with her for a few years. We are to watch her closely for signs of possible UTI's and take her in quickly, since it could be a UTI, but could be an infected cyst, which isn't good.
Oy!!! I hate not knowing.
6 comments:
I hope they figure out what's going on soon. It must be so frustrating to not know what this is going to mean for Bella.
Yes, not knowing sucks. Big time. I'm sorry that it may be a while before you have some definite answers. However I'm glad they are being proactive about this and keeping an eye on things.
Hi Steph-
It really does suck not to have answers like we so wish they would have. But you being the great mom that you are, will continue to follow up as instructed. I hope they will get to the bottom of this soon for Miss Bella. And by the way, tell Liz I love the pictures of the girls especially the one with Bella with those long eye lashes and beautiful lips! I will call this week probably on Friday on my day off.
-C-
Man.. that is frustrating not knowing. But, sounds like they are going to stay on top of it. Thanks for the update.
I am so sorry you have to be kept waiting. That must be so difficult. But Bella is lucky to have loving parents who are making sure she gets the best care ever and because you stayed on top of things, she will get the best treatment available whatever it may be. {{{hugs}}}
ugh. i'm so sorry you have to deal with this. i hope you can find some resolution soon.
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