Diagnosed with Genetic FSGS in 2020

[FSGS2020]

Hello all, I'm new here. Feeling pretty scared facing this CKD diagnosis. Watching myself slowly get worse is really hard. I was diagnosed with stage 2 CKD in 2020, which was only caught by taking a life insurance exam and it came back showing large amounts of protein in my urine. I had just had my annual physical, and thought I was completely healthy, but because they did not test my urine at the time, my labs appeared normal... Through a kidney biopsy and genetic testing later that year, it was confirmed that I have a rare case genetic FSGS. The genetic testing revealed that I have 2 APOL1 risk variants. I have been taking Losartan Potassium for high blood pressure. They put me on Farxiga 5 mg for almost a year. The side effects grew progressively worse until I ended up in the ER with stroke like symptoms, due to what they think was severe dehydration. They eventually had to take me off of the Farxiga due to not being able to tolerate the side effects. Those specific side effects immediately stopped after stopping Farxiga. I'm now 50 yrs old, at stage 3, eGFR of 54, having symptoms of frequent mild to moderate fatigue, nausea, brain fog, and some swelling in my hands and feet. My doctors keep telling me that I shouldn't be feeling any symptoms at my stage CKD, but I keep finding people online who are at a similar stage as me, and are having similar symptoms so that's irritating... I've seen 5 different specialists who are considered experts and they tell me my CKD doesn't really fit into any of the major categories. I also have degenerative disc disease in my lower back which just makes the symptoms that much worse when my back flares up. Feeling pretty frustrated as there seems to be no answers, so I just take one day at a time, eat a low protein and low sodium diet as much as possible, and try to be as positive as possible under the circumstances.