Today Nichole is going to go see my old kidney doctor, the good one, actually he has the rep of being one of the best in the entire state. (urologist not nephrologist) I know without a doubt if it weren't for this man, his skill, his knowledge, his caring, his willingness to think outside the box.......I wouldn't even be here typing this. His experimental reconstructive surgery on my kidney / ureter has kept me going far far beyond what was ever expected. He didn't cure me by a long shot but he gave me years in which to raise my kids. Nichole has all the signs of having the same genetic kidney disease as mine. It's bad that it also showed up about the same age. It's worse that she's showing symptoms that I didn't show until much later down the road. I've been worried about her for some time. It's not that she's avoided treatment, it's that she's received treatment by urologist who really don't know much, don't care much, and who refuse to think outside the box. So in any actual sense........she's basically NOT received treatment. Makes me really concerned about how much damage has been done to her kidneys in the meantime. The poor girl still has the stones in her kidneys from about 2 yrs ago. Now, honestly, that should not be. When she didn't pass them in a certain amount of time on her own, action should have been taken to remove them. Why? Because they cause damage to the kidney's filtering system and that damage does NOT heal. And they tend to cause infections which also cause damage and scarring. She's already been in acute renal failure at least once, I'm thinking twice. Due to symptoms, probably more as docs refused to listen to her and wouldn't even do the blood test. omg That she already has issues with retaining vast amounts of water, which indicates reduced kidney function worries me. That she is often in so much pain it literally drops her to the floor and she can't even help herself, scares me. I know what that is like all too well. Since she lives up near dayton now......going to my old doctor is nothing, actually his office isn't very far from her. So when she told me she was looking......I really pushed her to go to him, only make the appointment with him, and once she's in that office to tell him why she did. Because the man has written my case up in several medical journals. I'm an enigma, so to speak. The one disease I have is unusual in and of itself and is usually only seen after years and years of renal disease. In my case, it was the initial <acronym title="Diagnosis">diagnosis</acronym> and there was no "cause" we could come up with, top it off that I was diagnosed with it at 22 and that really threw it out of the ball park. He scoured the web, wrote those articles, and went to conference after conference in hopes of finding another doctor who had come across the same thing for more than 3 yrs. No one had ever heard of it before. So lucky me, my entire treatment has been experimental. Lucky for me, I had a doctor with a real brain who thinks outside the box when the situation calls for it. This doctor does not forget me. Even if it's been years and years since I last saw him. (due to location it's not so easy for him to see me these days) And even if he does, he can pull my records and have a very quick omg I remember moment. So I'm hoping / praying she will finally get the proper treatment that she has needed for at least the past 3 yrs. I'm hoping / praying that there hasn't been as much damage done to her functioning as I fear there has. And I'm praying even harder that she tells him everything and is NOT afraid to talk to him. He is one of the few docs that didn't look at me, think I looked 12, and proceed to ignore everything that came out of my mouth. So any good juju, thoughts, some prayers........would be greatly appreciated. This girl could really use some board power. Thanks.