The story of Danielle
At thirteen years old,while babysitting my brother for the first time, I fainted and he had to call 911. Little did I know that day would change my life. I was rushed to the e.r and at first my parents were told not to worry “it was just a large kidney stone.” A minor procedure, diet change and follow up with a stone specialist and I would be back to normal. A month goes by I have the procedure, meet with the stone clinic but when meeting with them I’m told I need to see a different urologist – I have something called medullary sponge kidney and this doctor knew little about the condition. I meet with the urologist who confirms I do have MSK but not to worry it was a benign condition. By 15 I was having awful pain again and frequent fainting, for years emerge and urologists didn’t know what to do or how to treat me. The pain and stones increased each year becoming almost constant and along with that came frequent infections, surgeries and hospital stays. At twenty I was blessed with a beautiful child but almost died because of a blockage in my kidney turning me septic and needing nephrostomy bags (which didn’t end up working and actually caused more issues long term). By twenty nine- I’ve now had over 150 surgeries to relieve blockages, remove stones, place stents etc I’ve gone septic 11 times, developed chronic pain between constant stones and surgeries (I believe in partially due to the surgeries) I’ve developed MRSA and now have trouble fighting the infections due to antibiotic resistance. But the worst part of this disease is there’s such little research that doctors don’t know what to do with you and surgeries to help have become a vicious cycle of causing more issues.I wish more awareness could be raised about this disease so we could have better treatment plans.