Thank you for sharing your story. We have a really good Nephrologist who has been aligning all of the specialists and she has been a big advocate for us so far. We are trying to get a meet set up with some stem cell doctor's at Northwestern and if it falls through our next step is to try to set something up at Mayo. Right now we are in this spot where medications and treatments aren't working and we need to look at something new or different to try. We have been heard the term 'medical mystery' more then I can remember. We are also trying to get a full gene study done peding insurance approvals.