Hello Vicki. I too have kidney disease, diagnosed in 2010. My version is called Focal Sclerosis. I had one transplant that didn't go so well and I'm on the list again.
Dialysis really sucks, but you will feel SO MUCH BETTER once you've been on it for 6 months. The reason why they say not to ingest cannabis if you're on the list is 2 fold: First, UNOS doesn't want to give an organ to someone who has a "drug problem," and second is that there is a mold present in cannabis (and 90% of everything anywhere) which if smoked could compromise a transplanted organ so they want to limit that exposure. I vape wax, and the CO2 extraction kills all of these spores, as do nitrogen, butane, alcohol and glycol extractions. I never was able to satisfactorily answer the question if it's safe to vape flower, so I don't.
When I got sick I visited a Reiki healer in the midwest (famous man, renouned) and he said to drink the juice of 1/2 lemon in 4oz of water every day. It didn't save my kidneys though :-(
Luckily I didn't have any pain with my condition so I can't relate to your constant discomfort. One thing I can say is that my nephrologist in Colorado /encouraged/ me to smoke cannabis. During the 5 years of my treatment, I've kept accurate logs of my blood pressure and I can say unequivocally that cannabis definitely lowers my blood pressure.
good luck, hope you can feel better