u/Downtown-Sample1420

My boyfriend spent years on dialysis and I was his caregiver starting at 18 y/o. Neither of us knew what we were doing, and nobody really helped us figure it out. Nobody sat us down and explained that hemo wasn’t his only option. He was placed on in center hemo and that was that. We found out about PD almost by accident, years later, and had to fight just to get him considered for the switch.
When he finally switched to PD, we thought things would get easier but they didn’t.
He was hospitalized multiple times, and I mean this very literally, there were nurses and staff who did not know how to perform peritoneal dialysis. Not unfamiliar with his case. But actually did not know how to do it. And instead of finding someone who did, they told me to do it. Me. A 19 y/o with zero medical training. I was performing his dialysis exchanges in hospital rooms while enrolled in school full time and working, because no one else was going to do it.
I tried to advocate for him every single time. I was dismissed every single time. He wasn’t listened to either. It was crazy to me that a young man in his early twenties with a serious, life threatening illness couldn’t get medical professionals to take him seriously in his own hospital room.
He went through a parathyroidectomy. A cardiac effusion. His potassium was critically high more times than I can count. I learned things about nephrology and emergency medicine, because learning them was the only way I could keep him safe when the people who were supposed to do that wouldn’t.
He got his transplant when he was 24
We’re two years out from transplant and life looks completely different. But I think about those years constantly, how different things could have been if we had just known more from the start. If someone had explained all his options before defaulting to in center hemo. If a single person in those hospital rooms had taken me seriously when I said something was wrong.
I’m not posting this for sympathy, I’m posting because I genuinely don’t know if our experience was unusual or if this is just what dialysis looks like for a lot of people.
So I want to ask:
What was the hardest part of dialysis for you or someone you love? Was it the physical toll, the emotional weight, not knowing your options, the financial pressure, feeling invisible to the people treating you? Did anyone actually explain what treatment options existed before you were placed on one, or did you find out about alternatives way later than you should have? Was there a moment where the system failed you completely?

My boyfriend spent years on dialysis and I was his caregiver starting at 18 y/o. Neither of us knew what we were doing, and nobody really helped us figure it out. Nobody sat us down and explained that hemo wasn’t his only option. He was placed on in center hemo and that was that. We found out about PD almost by accident, years later, and had to fight just to get him considered for the switch.
When he finally switched to PD, we thought things would get easier but they didn’t.
He was hospitalized multiple times, and I mean this very literally, there were nurses and staff who did not know how to perform peritoneal dialysis. Not unfamiliar with his case. But actually did not know how to do it. And instead of finding someone who did, they told me to do it. Me. A 19 y/o with zero medical training. I was performing his dialysis exchanges in hospital rooms while enrolled in school full time and working, because no one else was going to do it.
I tried to advocate for him every single time. I was dismissed every single time. He wasn’t listened to either. It was crazy to me that a young man in his early twenties with a serious, life threatening illness couldn’t get medical professionals to take him seriously in his own hospital room.
He went through a parathyroidectomy. A cardiac effusion. His potassium was critically high more times than I can count. I learned things about nephrology and emergency medicine, because learning them was the only way I could keep him safe when the people who were supposed to do that wouldn’t.
He got his transplant when he was 24
We’re two years out from transplant and life looks completely different. But I think about those years constantly, how different things could have been if we had just known more from the start. If someone had explained all his options before defaulting to in center hemo. If a single person in those hospital rooms had taken me seriously when I said something was wrong.
I’m not posting this for sympathy. I’m posting because I genuinely don’t know if our experience was unusual or if this is just what dialysis looks like for a lot of people.
So I want to ask:
What was the hardest part of dialysis for you or someone you love? Was it the physical toll, the emotional weight, not knowing your options, the financial pressure, feeling invisible to the people treating you? Did anyone actually explain what treatment options existed before you were placed on one, or did you find out about alternatives way later than you should have? Was there a moment where the system failed you completely?