Living with Kidney Stones

A day I will never forget, February 14, 2005, I got my first kidney stone. It started out like any other day at work. We went to celebrate someone’s birthday for lunch and I could not finish and had to go home. In between vomiting, I went to urinate and it looked like pure blood. I was in excruciating pain and went to the ER. After a CAT scan, I was diagnosed with a huge kidney stone (golf ball size), which had to be “pounded” twice by lithotripsy and stents put in. I had never even had as much as a kidney or bladder infection in my entire life.

I continued to develop them and underwent seven lithotripsy procedures and stents, which could only be left in for 7 days or less because I could not tolerate them.

I started getting sicker and sicker each time I would have an episode with severe vomiting, diarrhea, and dehydration. I lost a huge amount of weight (went from size 18 down to 8-10). I would get sick so rapidly that an ambulance had to be called numerous times because I would collapse. Once I ended up in the ER by ambulance and I was found to be in kidney failure and my blood sugars tested out as a diabetic, which landed me in the hospital again for about 4 weeks. They called in all sorts of specialists to see why I was getting so ill and they scoped, probed, and prodded. Finally, they called in an Endocrinologist and after more testing; they determined that my adrenaline system was shot and my Cortisol level was dangerously low. Additionally, he found a tumor on my pituitary gland, which accounted for why I was getting so sick. The doctor began me on drug therapy to try and shrink it without surgery. The good news is that it worked and my Cortisol levels returned to normal and the tumor virtually disappeared.

Now at the 3 year mark, I still produce kidney stones on a weekly basis and they are usually small enough to pass, but Golly Gee Wilikers are they still painful!!!! I would rather have all four boys over again without an epidural than have kidney stones! I am now also beginning to develop UTIs along with the stones. Sometimes I still require a trip to the ER or hospitalization, but it is nothing like before. This has taken an extreme toll on my family, both emotionally and financially. After it seems we have tried everything, my urologist is stumped as to why I keep on producing them and to the point where he just treats me for symptoms through antibiotics, hydration, and pain medicines. I wanted to post because I am willing to try anything and wanted to see if anyone had any advice, not to mention I wanted to share my story with others because it seems that when you are going through something like this, you are the only one in the world!