Last time I posted about my kidneys my levels were all out of whack and they were increasing my daily prednisone dosage. We were just playing a waiting game of labs and levels. It was not a game I enjoyed playing and I wasn't really winning. Unfortunately, I'm still not winning.
A few weeks ago I completely a 24-hour urine test to see how things were going. The results did not really show in my favor which led to a phone call from my nephrologist. Usually the nurse calls with results, so when the doctor called I knew things were not good. The results continue to show protein in the urine, but normal kidney function. Confusing? Yea, it doesn't make much sense to me either.
So, what's next? Clearly the prednisone isn't working. My doctor is wondering if another medication (often used to treat transplant and chemo patients) would be better suited for what's going on. She's also wondering if instead of minimal change disease I actually have another condition called Focal Segmental Glomerulo Sclerosis, or FSGS. If a patient has FSGS there is scarring on the part of the kidney that filters blood. The only way to tell for sure would be to do another kidney biopsy (which no one wants to do) and even then we couldn't be positive. In order to diagnose FSGS you have to have the perfect kidney specimen and that cannot be guaranteed in a biopsy.
I have an appointment this coming Friday to talk with my doctor about the next steps. I continue to ask for prayer as this is a much scarier diagnosis than minimal change disease. The treatment method for those who do not respond well to drugs can often be dialysis and a possible transplant. We trust God and His plan through all this, but are fervently praying for healing!