My 24 yr old son has end reneal kidney disease on Peritonal dyalisis I’m exhausted. And afraid to leave him alone for a couple nights. Any advice please 🙏
My 24 year old son was diagnosed with a rapidly progressive disease Vasculitis Anca. Six months ago he was a very healthy normal very strong young man. And suddenly he has no kidney function on dyalisis and needing a kidney transplant (hence to say the medical system failed us. And failed to refer us to a specialist to tell us his kidney was only functioning at 30%.had they had told us his kidney may have been ok…but that’s a whole other story sadly horrific 😤🥲)
It has been a drastic shocking decline watching him suffer in pain. In and out of the emergency too many times to recall. My heart is Brocken watchingmy amazing son go through this.
He is learning to understand his body and the at home peritoneal dyalisis but as you all k ow. It’s a roller coaster of up down and all around.. one day he is great. The next he may not be. What I’m hear to hopefully find some advice and support on is. Me and being his caregiver. He is learning to do mostly everything for himself. Setting up machine and all that stuff. But the diet and what he can eat is all on me. It’s just me and him. We really don’t have anyone else. Before this I was travelling and we were both living our lives. I am afraid to leave him alone at night. And my relationship is falling apart with the man I love. It’s been all great till my son got sick. And he thinks I should be able to just go away here and there even for a couple of nights. But my heart is so confused. 😵💫. My son is my world. I’m so worried if I go away and he needs me. I’m an awful Mother. It’s just been a crazy scary heartbreak. And I am exhausted and so frustrated with nobody understanding how I feel. You just don’t k ow till ya know how heartbreaking it is to see your child (man child ❤️) go through this. Being scared that he may die in his sleep. Any advice. From a confused broken hearted mother 🙏🙏🙏😞🤷♀️