Week Two - The Never-Ending Questions.....

I am a huge believer in prayer.  And of course, the only way to get people to pray for your sick kid is to let them know she is sick.  Which leads everyone you tell to ask a bunch of questions, and suddenly, like it or not, I am the Ambassador of Pediatric Renal Disease.

Here are the questions I have heard more than a couple of times:

1) "Is it both of her kidneys?"  Now, as a physician I do know a bit more about this than the average guy, but I really had NO idea that this would be the very first thing people (and I mean nearly EVERYBODY) would want to know.  If someone needs a new kidney, it means that neither one of the ones they have are working.  And there is no way with just blood work, by the way, to even tell if someone has only one kidney working. Either your blood is being cleaned out, or it isn't.

2) "How did this happen?"  Now THIS question makes sense to me, but there really is no good answer to it.  By the time she was diagnosed, it was too late to get a biopsy to see what the problem was.  Apparently, one dead kidney looks like another, so she is past the point where it would tell us anything.  I'm grateful, in a way - those biopsy needles look to me as if they hurt.  But the nephrologist made some assumptions based on her age and degree of failure, and nephronophthisis seems likeliest.  It's rare, inherited and untreatable, so finding it earlier wouldn't have mattered except that it would have given us more time to hunt up a living donor.

3) "How is she taking it?"  Well, all things considered, she was taking it well until the severe dietary restrictions and numerous pills and weekly shots started - but that's a topic for another post.

4)  "Is she on a transplant list?"  Well, no.  She's going to need a kidney, but you don't make the list until you get a little farther down the road.  She still has about 10% of her kidney function, and more importantly, she's still peeing.

5) "Are they going to do dialysis?  I hear that's HORRIBLE." (That last was said right in front of my daughter.)  We are hoping to get a kidney before she needs dialysis.  And please don't scare my kid more than is needed - this is plenty scary enough as it is.

6) "Someday you'll know the reason for all of this."  Okay, it's not a question, but I have heard some version of this this more than a couple of times. And really?  A reason? For an 11 year old kid to have a disease that will almost certainly shorten her life, make many parts of her life miserable, require not one but several transplants over her lifetime?  It's like telling a mom who's baby died of SIDS, "Oh, the baby's in a better place now."
I (kindly, I hope) told one young woman who asked this question, "If you are still looking for reasons why bad things happen to innocent people you are only showing how young you are. This is the inheritance of Adam, and we just have to trust that God loves us anyway."

Better to say nothing, or simply offer to pray - which is what I was asking for anyway.

DeeDee