Hello,
After finding out my son had an unknown kidney disease and stage 4 failure in late September of 2018 we worked fast to try to find him a donor. Luckily we were able to find a donor and he had his transplant in June of 2020. He had one rejection episode just days after we came come from the hospital and we returned for a weekend while they stabilized him and he is now permanently on steroids. He’s had at least 4 biopsies on the kidney since transplant and the collapsing Glomerulopathy wasn’t discover till the biopsy they just did in December as well as a bunch of urine tests. His elevated protein has been happening since late October. We are new to all of this. The kidney disease, the transplant and now this collapsing Glomerulopathy in the kidney that was transplanted.
How do you all deal with this? We feel so overwhelmed. I keep having to fight with the school, he’s got no energy and has headaches pretty much 24/7. He’s no better than he was before his kidney transplant. It’s very disheartening. Any words of advice or coping tools?
I included a pic of his sweet face after one of his biopsies. He’s 17 and on the autism spectrum. My heart hurts for him. He just wants to be a kid and this disease is denying him that.
