Rolling Stones
So to top off all of my other issues, something else happened last year that will probably continue to happen for the rest of my life!
It all started one Friday in July, I had the sharpest pain that I had ever felt on my lower side. I (incorrectly) thought that it was just period cramps because my cycles tend to be really heavy which come with really painful cramping. After I had taken some Midol and the pain still hadn't stopped, I suspected something else was wrong. I could not even sit up in my chair, and was in bed all day. I remember feeling awful because my brother had really wanted to go bowling that day, but my mom was too busy making sure I wasn't dying (lol!) The pressure from my stomach made me have diarrhea and dry heave many times, to the point where my mom said that my face was pale. After a while, I felt a "pop" in my bladder when I urinated, and the pain immediately went away. When my mom checked my diaper, there was a huge crystallized stone in there! There wasn't any blood in my pee, which was unusual for having a quarter size stone come out of your urethra. I named the stone "Bob" and felt really proud that I passed it all by myself. My father had a stone that was much smaller than mine and had to be taken to the hospital in order to pass it!
Even though the pain went away for a little while, that night the pain continued, although it wasn't nearly as bad as the first time. My mother took my stone and I to the Dayton Children's emergency room where they ran tests, which came back and said that the stone was definitely from my kidney and that it was made of calcium. When the ultrasounds came back, we discovered that both of my kidneys were packed full of stones. The reason that they are made of calcium is because my disease (Spinal Muscular Atrophy) is constantly decalcifying my bones since I do not use them. As a result, the calcium from my bones goes into my bloodstream and therefore to my kidneys. I also have a family history of kidney stones, so that doesn't help either. The nephrology doctor (who I now see regularly) prescribed me a diuretic, Chlorothiazide (Diuril), which basically flushes out my kidneys daily so that the stones will not build up. As a result, I was also prescribed potassium chloride in order to balance out my sodium levels. Not only do I have to take these medicines, I also have to make sure to drink at least 2 L of water daily. Even if I go one day without drinking much water, I will have a stone within the next couple days. A couple months ago the doctors did a urine test which came back that my calcium levels were a lot lower than they were before, which is great!
So basically I will continue to have smaller kidney stones probably for the rest of my life, since my bones will never stop decalcifying. If I take my diuretic daily and drink tons of water, hopefully, I will not have a giant stone ever again! The smaller kidney stones do not hurt as much, but once in a while I will get pain on my side that I just have to deal with until the stone comes out. My dad came up with a funny nickname for me "Rolling Stones" because I am basically filled with stones and always rolling around in a wheelchair! I am glad that even though I will continue to have stones, the process will always be manageable and definitely not life-threatening!