Living with Kidney Stones

It started when I was in high school (18 yrs)1st stone passed with fluids. Then my second stone was after birth of my 1st child (21 yrs.) again passed with fluid and rest. The real problem started the day after my 2nd child (24yrs.) 3rd round with stones was much larger and there was no way for it to pass. Thank goodness for my ob/gyn, because no one else would believe me. After 12 hours with complete blockage of my kidney and an irrate OB/GYN I had uteroscopy to remove the stone. Too bad for me that because they waited so long I aquired urosepsis and had a 2 week stay in the hospital.

I thought I was in the clear when I had no stones for several years. I had increased fluids, drank lemonade, and reduced calcium intake and all was good or so I thought. In Feb. of 2007 I began to get cramp in my side and had a lot of nausea and vomiting. Thinking it was just stress of work and moving I ignored it until it was unbearable. 2 days before my 32nd birthday I got the news that the stones were back and they were worse than ever. I had several stones that were anywhere from 2-10 mm.

I have had two rounds of ESWL with no change. the pain is constant and tiring. The urologist I have been seeing have been no help. They are reluctant to prescribe pain meds and make me feel drug seeking. They have now referred me to a pain specialist instead of taking care of the problem. They do not want to do another procedure due to the fact that I have severe kidney damage from either the stones or chronic infection.

In the past 1 1/2 year I have had numerous: KUB’s, CT’s, renograms, VUCG, and ultrasounds. most of these tests were at my request since I am an RN. I have found that my kidney is very scarred and atrophing. The stones only occur in my left kidney that is 1/2 the size of my right , it is lying backwards (malrotation)and only 32% functioning. I finally got tired of the urologists in my town doing nothing, but the “watch and wait”, so I found a new physician at Johns Hopkin’s who was very attentive and supportive. He is the director of stone disease there and I am optimistic. The fact that he is doing something means the world to me, even if it does not work.

On Sept 3rd I go in to have the uteroscopy with laser removal and a stent placed. I hope all goes well, in the event that it does not work I will undergo the PERC and final option is removal of the kidney all together. I will write back to let you know how it goes. Just a good feeling to know that someone was willing to listen I was starting to believe I was going crazy.