For a long time I have been thinking about what I am going to do when the time comes for me to decide whether to get a kidney transplant. I have another 5-6 years to wait so there is no real hurry, but I still need to have put thought into it. If I talk to a transplant surgeon or a nephrologist, they have no hesitation in arguing for a transplant. However, none of these people have any personal experience of living with a transplant. I have 25 years' experience. It's a nightmare. You have to constantly be under stress about your blood values, you are in a doctor's office every few weeks getting a blood test (and then the excruciating wait till the results are known), the occasional, random increases in creatinine stressing the hell out of you (is this the end?). You have to take immunosuppressives, and they make you catch infections all the time. Transplantation just replaces one problem with another set of problems.
But yesterday I talked to a nephrologist who gave me a much more sensible criterion for making the call. He told me that for my specific case, i.e., for my individual and particular situation, it makes sense to hold out for a good quality kidney. Then he defined good quality for me: from a young, healthy person, non-smoker, does not take too long to get to me, has a good match. When I get the phone call, I will be allowed to ask the surgeons whether these criteria are met before deciding whether to say yes or no.
This doctor's advice was to just say no if the kidney didn't meet the criteria, and wait for the next one. And if the kidney met these criteria, I should take the chance and get a transplant. I think this makes a lot of sense: I can maximize whatever gain I can get by a transplant by getting the best possible kidney I can get. Until then I am just doing fine on dialysis. I feel much less stressed about this now.
This is the first time a nephrologist or surgeon has given me anything other than an unconditional "yes" answer. I think that doctors need to think harder about their patients and their particular situation and give more informed advice than they generally do. Just giving a patient an oversimplified answer is more harmful than helpful.