Thanks for the info everyone. Very helpful.
Like I mentioned earlier, I don't know when (or even for sure if) we will need to go this route, but I'm the kind of person who needs to have an idea of what is at the end of the road we're traveling, if that makes sense.
To give more info - DD (age 3) has multicystic dysplastic kidney which is non-functional and the other kidney has dual ureters but no reflux. At our last neph appt they discovered that the multicystic kidney disease has also affected her good kidney. Luckily the cysts in the good kidney are small enough that they were not detected on previous ultrasounds but have now grown to large enough to be seen. Our neph expects them to continue growing and eventually affect kidney function. I was too shocked by this turn of events to think about all these questions right there in the appt but now that some time has passed I'm considering what this means. But we believe that kidney failure is still quite a ways down the road and so it isn't necessary yet to call a special appointment to discuss it.
One decision that needs to be made soon though, has to do with giving growth hormone. DD has been on GH for about a year due to an basically unrelated growth disorder. Now that we know about the cysts in the good kidney I hesitate to continue the GH since GH does not discriminate about what in the body it accelerates the growth of. Our neph, when I asked this question via her nurse, responded that the cysts are going to grow regardless so we should continue the GH. But I'm not sure I'm comfortable with that. Unless, of course, the kidney failure/ transplant is a sure bet either way in which case we might as well help her be as tall as she can be. Her growth has not been super impressive on the GH anyway though.
Anyhow, probably far more complicated than anyone can offer an opinion on but if you happen to have personal or professional experience with a similar situation I would love to hear it.
Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X