Skye’s Story
Kidney stones, Fibromyalgia, & Type II Diabetes
Hi! I’m Skye, no stranger to chronic illness, living with medullary sponge kidney with recurring kidney stones, fibromyalgia, and type II diabetes.
My story starts in 1st grade with chronic stomach issues that manifested itself into generalized anxiety disorder. My parents managed that as best they could through elementary school, and then came middle school. Sixth grade my anxiety was amplified due to being bullied which naturally caused my stomach issues to follow suit. I developed stomach ulcers, gastritis, and IBS-C. Forced by health to miss a lot of school, I was homeschooled my seventh grade year, but returned to school for eighth grade. What was supposed to be the most exciting time of entering high school, turned into my worst nightmare.
Struggling through the first semester of ninth grade with my stomach issues getting worse, I was still able to keep my gpa above 3.0. However, again, due to my continued missed days of school, I was forced to go online with my second semester of freshman year. In March, three months before the end of the school year and just two months after turning fifteen, I experienced the worst pain of my life, pain the doctors at the ER dismissed as constipation two days in a row. On the third day, they found a 4mm kidney stone.
My continued stomach issues required us to seek treatment at a larger hospital with more specialists at Helen DeVos is Grand Rapids. Throughout multiple visits over three years I went through a ton of different tests, submitted too many stool samples, survived several endoscopies, and many hated colonoscopies. I also qualified to participate in a brand new treatment for IBS that was only offered at a few hospitals called IB-stim. IB-stim is a treatment that uses electrical impulses to the cranial nerves through my ear. Unfortunately that treatment didn't work for me like my doctor had hoped. Before my last colonoscopy in Grand Rapids, my fecal calprotectant was extremely elevated, which means one of two things, Crohn's or Colitis. But once again, “everything came back looking good”.
As my sophomore year was approaching I still had high hopes of fulfilling my dreams of playing softball in college while becoming a physical therapist. But this life threw me into a medical field that I didn't ask for, learning what every lab means, understanding all the medical terms, researching all the medicine, knowing too much about my veins like how deep they are and which is best for poking, what buttons to push on all the machines, and becoming friends with nurses, doctors, cleaning personal, ultrasound techs, transporters, and cafe workers. Before long, I was trading dugouts for doctors’ offices, the crack of bats and the dust of softball diamonds gave way to the quiet hum of vital machines. My mitts and catchers gear were replaced by gowns, needle pricks, and the sterile glow of hospital corridors.
I was hospitalized several times over the next year with kidney stones. I went through my first lithotripsy and stent placement at 16. That stent placement sent me right back to the hospital as I couldn't pass any urine. That won me another stay in the hospital. Around the same time I started developing mouth ulcers, so painful I couldn't even brush my teeth, eat, or hardly drink.
Still not fully convinced I didn't have IBD, we opted for bigger and better, drove east about 4 hours to Cleveland Clinic. There I met with my gastroenterologist who ordered a capsule endoscopy to fully check for Crohn’s…..but, yep, you guessed it, “everything came back looking good”. I was then referred to Pediatric Rheumatology.
I was negative for Lupus and she wasn't sure it was Behcet’s, that is when I learned I was on the verge of an autoimmune disease and at this point they just started treating symptoms. I was put on Humaria for my mouth ulcers and that ultimately helped my gastro issue as well. I will sometimes still get a break through mouth ulcer but that's not been very often over the 2+ years I have been on this medicine.
However, I was still fighting kidney pain. In and out the ER, week after week, with them telling me my kidneys were full of stones but they weren’t blocking anything so they shouldn't be causing pain. Well, just because they shouldn’t, doesn't mean they don't. Again, not satisfied with the urologist and nephrologist’s conclusions, we headed back to Cleveland. I was put on two medicines to help stop the formation of kidney stones and diagnosed with medullary sponge kidney of both kidneys. Meaning, my kidney stones are not forming due to diet, drinking pop, and not enough water, like the local urologist tried to tell me, a 15 year old athlete. My kidneys will forever make stones because of their spongey nature. My urologist suggested doing a lithotripsy on both kidneys, separate times, to blast the stones in there that she can see. So, that is what I did.
February 21st my mom and I traveled to Cleveland Clinic to have this procedure done on the left kidney. What she found was a stone blocking one of the ducts of my kidney. She blasted it along with some other ones but needed to place a stent, unfortunately, that would be removed in a week. The pain afterward was unimaginable, which I remembered from the last one, and if anyone has ever had a ureter stent, we all say the same thing that it hurts worse than the kidney stone itself. But what I never expected to happen was being hospitalized locally, just five days later being the sickest I have ever been in my life, with sepsis. I was hospitalized for a week, with the stent still in, they were giving me heavy doses of Rocephin to kick the infection. I was able to go back to Cleveland on March 6th to have the stent removed. She explained that the stone itself carried the infection, and when she blasted it that's when the infection was released into my bloodstream. Which makes sense as to why I was so sick and in so much pain immediately following the procedure.
Scared out of my mind, I went back to Cleveland on April 11th to do the lithotripsy on the right kidney. This one worked out better than the last one, however I came home with a new diagnosis, Randall’s Plaque Syndrome. After getting my stent removed the pain was still just as excruciating. I was referred to switch from pediatric to adult rheumatology in Cleveland where I picked up another diagnosis of Fibromyalgia. But sadly my pain has never subsided, most days I feel like I am no longer living, I am just surviving.
