Large 22mm staghorn kidney stone with hydronephrosis..help

I'm really sorry you're going through this Emily. My wife was born with a double kidney on her left side. She had 2 regular kidneys, but the left one also had a small deformed kidney "piggybacked" onto it that started causing her problems as she entered her 40's. She never knew she had a double kidney until this time despite having 4 kids. Anyway, the small deformed kidney got sick and screwed up the normal one it was attached to. We had no health insurance during this time(2005-2008), so my wife spent almost 3 years on suppressive antibiotics and pain medication because doctors kept putting it off. They said eventually it would just stop functioning and remain in her body as a useless mass. They essentially let her healthy left kidney die off as the smaller deformed one got sick and nasty. Not to mention the stress this put on her remaining right kidney. Over the 3 years, she slowly got sicker and weaker. They finally scheduled surgery to remove the whole mass(her left kidney + attached piggybacked kidney). Surgery was scheduled for June 2008. However, by April 2008, she looked/felt awful. She was very pale, couldn't eat, couldn't sleep, and people were asking me if she had cancer. I called the hospital, demanded to speak to the surgeon that was to perform the surgery, and told him what was going on. Thankfully, he said to bring her in a few days later. He took one look at her and moved surgery up to the following week. There is no doubt in my mind that if we had waited for the June appointment, my wife would have died before then. 12 years later, she is healthy and happy. They removed the whole mass and she has been just fine ever since. It would've been nice if they had done surgery in the beginning and saved her left kidney by cutting away the deformed one. Longer recovery time, but 2 kidneys are better than 1.

I am not trying to scare you with this story. I am writing it so I can tell you what I would have done differently and reassure you that everything turned out fine. First of all, her condition was very different than yours(hers is really rare) and it involved a deformed kidney that essentially died and took her healthy one with it. Like I said, we had no insurance at that time(we do now), so doctors weren't interested in helping until it was dire. You are a human being with a very painful, expensive, debilitating condition. You deserve answers(insurance or not). You need to bug the crap out of these doctors! We sat around thinking that they were doing their best and wanted to help but couldn't. They just didn't care, so MAKE THEM CARE. They need to make a plan for you. There are standards for treating staghorns. Namely, surgery. You should familiarize yourself with these and start asking about them if you haven't already.

I suffer from stones(right now in fact). It's why I got on here. I know it's terrible sitting around thinking about this "thing" inside your body that needs to go away. Hopefully you have pain medication to help. I've known a few people who live with large stones. Sometimes they hurt. But try to live your life and don't miss those tests! I apologize if I added to your anxiety. You need to advocate for yourself until they do something. Out of all the specialists you've seen, were any of them Nephrologists?