I am a 66-year-old white male with no history of kidney disease. I started having swelling in my legs and feet in November 2015. My doctor changed my BP mess, trying to relieve swelling. That did not work. During December, I started getting nauseated after meals and was eventually diagnosed as having gall bladder stones. I had my gall bladder removed on January 5, 2016. I stayed sick, couldn’t eat for the next two months, and lost 30 pounds.
The second time I was in the hospital for dehydration, it was discovered that I had proteinuria and Nephrotic Syndrome. I had a biopsy and was diagnosed with primary FSGS. I was treated first with CellCept and continually got worse until I had 20 mg of albumin in my iron. At this point, my nephrologist sent me to University of Alabama Hospital in Birmingham, which is also my home town. I saw Dr. Eric Wallace there, and he started me on Prednisone. After this, I started to get a little better and was able to eat again. This was in June 2016.
In November 2016, Dr. Wallace said I had reached a plateau. He cut my Prednisone to 15 mg and started me on 4 mg of Prograf a day. Two weeks later, after checking my Prograf level, he increased it to 6 mg a day. At this time, my creatinine was 1.5 and kidney function was 40%. Three days later, my creatinine was 3.4 and kidney function was 20%. I was in the hospital for five days and sent home with some improvement. One week later, I couldn’t move and was sleeping all the time. At this time, I was on 60 mg of Prednisone and a lot of diuretics, but no potassium. I went to the doctor and had a potassium level of 2.4, so I was sent to the ER for IV potassium. It felt like razor blades going in, but relieved the problem. I am now home and on 60 mg of Prednisone again.
This is my story so far. I have been told that I don’t meet the demographics for this disease, so I am wandering if there are any other patients in my age group with this problem.