The discussion in favor of pushing kidney donation by touting dramatic wait list numbers (discussion here but also on the CKD discussion boards), using language that describes a kidney transplant as routinely "life saving" and language that highlights the pitiful quality of life of people on dialysis hinges on comparing successful kidney transplants with conventional dialysis. Indeed with conventional 3 day a week, 3 hour dialysis the outcomes are largely dire and transplant is a much better treatment.
However, this framework begs a question. Would the many determined advocates for kidney donation also advocate for expanding the use of daily nocturnal home hemodialysis (DNHH)? The outcomes are highly similar. One would expect a 2% mortality per year on DNHH for many of the same people who expect a 2%/year post transplant mortality rate. Like kidney transplant DNHH offers a better quality of life than conventional incenter dialysis. There are trade offs, it takes me about an hour a night to set up, a minus against DNHH, but in DNHH's favor it offers the chance to take fewer medications and certainly not the powerful immune system suppressors needed with kidney transplants.
By the vocabulary logic of the kidney donation advocates DNHH is as life saving as a kidney transplant. We could say there are 60,000 people on the waiting list for DNHH (if we assume 20% of the US dialysis population should be dialyzing every night at home). "60,000 people waiting for the opportunity to be saved by a better treatment", sound familiar? DNHH you'd only need Congress to pass some laws , of course that is about as hard as talking someone out of a kidney.
The final point brought up in favor of kidney transplant, as an aside, is cost. But there again there are trade offs. DNHH offers no additional outlays by Medicare on the Part B side (and offers the chance for savings on separately billable medications) and DNHH offers savings on the Part A side (I'm assuming, that data doesn't seem to be collected). Most advocates for increased donation would also support extending the federal responsibility for post transplant medications and medical care. Right now there is no data to compare the total medical costs of someone in the forth year of a kidney transplant to someone four years into DNHH.
Now understand, would I work to have a transplant if I didn't have recurring FSGS? Sure. Even as I remember the emotional strain a failed transplant puts on recipient and donor - I would take the risk if my odds were "normal". I know what a bad transplant is like, I remember OKT3, but if I thought I had a normal shot I'd take it. I think everyone is saying that kidney donation is a good thing - the question is how accurate should be the statements from the organ procurement programs and we donation advocates? And: If it is alright to routinely call a kidney transplant life saving can we call DNHH routinely life saving too?