u/lilopomelo

My son (now 17 months adjusted) was born premature and suffered a AKI. Now he is stage 4 CKD with a creatinine between 1-1.5 (should be closer to 0.2-0.4 for his age). He has a gtube to work on feeding and we have to give him a lot of water via gtube to meet his fluid requirements.

I just want to hear from others with transplants that life can be good - despite the need for monthly labs, tons of medications and everything else… I am having a really tough time with his diagnosis, the uncertainty and the burden on him to manage this the rest of his life. I worry about romantic partners not wanting involvement with someone that has a chronic condition.