07/22/2026
Sometimes you just have to say why me 🤷♀️ then I remember my momma saying why not me when she was in the last stages of cancer.
Why not me?
Yesterday I was diagnosed with an inherited kidney issue called cystinuria. It’s not curable but it is treatable with potassium, a ton of water (4-5 L) daily and nightly as well as a diet of minimal protein and high volume of fresh fruits and vegetables. And very low salt intake.
Cystinuria is a lifelong genetic disorder that prevents the kidneys from reabsorbing the amino acid cystine. This buildup leaks into the urine, crystallizing into hard stones. Symptoms include severe flank/back pain, blood in the urine, and recurrent kidney stones. Management requires heavy hydration, dietary changes, and sometimes medication.CausesThe condition is caused by inherited mutations in the SLC3A1 or SLC7A9 genes. These genes tell your body to make specific transporter proteins in the kidneys and intestines. When these proteins don't work correctly, the kidneys fail to pull amino acids (specifically cystine) back into the bloodstream. Because cystine dissolves poorly in urine, excess amounts form jagged crystals and stones. Just over a year ago my kidney ruptured due to this and after close monitoring and consistent testing since then I now know what I’m dealing with. Getting back on track could’ve have happened sooner. One more reason to be motivated.
My supper tonight was a loaded veggie wrap with a small bowl of soup and fried rice. Nothing fancy but pulled together some leftovers.
