Hi all, I am Jay's mom. Sorry to have been absent from the conversation and am just catching up. Obviously, Jay has also been busy with work, life, etc. I will let him know that he needs to re-enter the conversation. Briefly, I your conversation brings back many memories…Jay will be 31 this June. We first knew there was a problem when he was two, when he passed his first, and only stone (but no diagnosis at that time. At age four, he was mis-diagnosed with medullary sponge kidney disease--a diagnosis that stuck until he was about twelve. As he began to enter puberty, he suddenly had a severe drop in kidney function, which would not have been consistent with the diagnosis, and we were sent for genetic counseling, which had just become available at the time. It revealed that Jay had Dent, it skipped his younger brother, and of course, I was the carrier. Being adopted, I did not know of any family history. I will have Jay weigh in to let you know of his regime of meds over the years, and his more recent and quite experiment diet protocol (basically protein free). So here we are…almost 20 years later after being told that he would need a transplant within one year as he entered puberty. We aren't fooling ourselves. The nephrologist has been very clear. It is not a matter of "if," but "when" we go to transplant. But Jay feels well and our hope is that for him, it makes sense to hold off as long as possible for that eventuality. He is on "the list," and we may have a potential living donor who is not a blood match but a tissue match, so we are hopeful that there will be options when that time comes. In the meantime…one day at a time. I'll contact Jay to rejoin the conversation. And if you are able to come to the Chicago meeting in June, our family will be there!