I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Simon Dog on March 26, 2016, 08:12:05 PM
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Has anyone else noticed that the entire nephrology team seems to be negligent about discussing numbers?
I'm listed at a transplant center, and EPTS and KDPI were only discussed vaguely with me. Although EPTS was mentioned, as was the "top 20% EPTS to get a top 20% kidney" rule, he never thought to tell me that "at your age, even with all other factors being perfect, you will not qualify for the prime meat". The transplant team also never discussed KDPI except when answering my questions about it. Without the info, I would someday receive a call and be told I was being offered an "xx% KDPI kidney" without really understanding what it means. Perhaps the transplant center prefers it if I just listened to "this is good for you".
My regular neph was most helpful, and was forthcoming in offering his opinion of what KDPI I should accept given how I do on dialysis, how I seem to be coping, my general health and age. To his credit, he didn't answer at the appointment when I asked him, but dug up a few papers on the concept (probably the same ones I found) and offered a helpful and reasoned conclusion - which happened to be one I feel comfortable with.
But, those terms would be just initials to me if I didn't do a lot of asking.
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The transplant team also never discussed KDPI except when answering my questions about it. Without the info, I would someday receive a call and be told I was being offered an "xx% KDPI kidney" without really understanding what it means.
On my transplant call yesterday the coordinator made sure I knew what KDPI was before she told me the number.
he never thought to tell me that "at your age, even with all other factors being perfect, you will not qualify for the prime meat"
I don't see why the transplant folks would tell you that. Its likely depressing and not something that can be changed, beyond you be willing to take a higher risk kidney. I'd think they would have discussed as much as you asked them but for them KDPI is rather fixed and just part of the system they work under.
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call yesterday the coordinator made sure I knew what KDPI was before she told me the number.
Knowing about it BEFORE you get "the call" is very important, so you can do you research, talk to the transplant team, you primary neph, and family to arrive at a reasoned conclusion as to what KDPI you will accept. My MD tells me he advised one of his patients to turn down a kidney in the 80s, and that patient got lucky and got one in the 20s a few months later. Waiting to provide this info the transplant candidate until (s)he has to make an "on the spot decision" is not optimal patient service.
My primary neph was unable to answer the "what KDPI should I accept?" on the spot. He took his time, actually looked up some papers on the subject, and came back to me with well reasoned and carefully considered answer. If an attending neph who knows this stuff couldn't give his best answer off the top of his head, how is a transplant candidate supposed to make a decision "on the spot" without advance consideration?
I don't see why the transplant folks would tell you that. Its likely depressing and not something that can be changed, beyond you be willing to take a higher risk kidney. I'd think they would have discussed as much as you asked them but for them KDPI is rather fixed and just part of the system they work under.
It is fixed, but it is beneficial to me, as the patient, to know if I should evaluate an offered KDPI based on the assumption I am eligible for a 1 - 100 vs. eligible for a 21-100. Taken to the extreme, if I get a call and am offered a "21%" KDPI, I know it is the absolute best I could ever get (barring all eligible persons turning down the 1-20 ones), whereas if my EPTS was lower, I would know that it was not the absolute best. Yes, it's an extreme example - 21% is a good deal no matter what you are eligible for. Alternatively, 59% is in the lower half of what is available to "under 20% EPTS people", but in the top half of what is available to use > 20% EPTS. Knowing where I stand on EPTS makes me more likely to accept an organ with a slightly lower number, and was no doubt factored into my MDs recommendation as to what I should accept.
I'd think they would have discussed as much as you asked them but for them KDPI is rather fixed and just part of the system they work under.
I asked and the surgeon told me "you can find an on-line calculator for EPTS". It would have been more helpful for him to say "I don't know exactly, but at your age, it will be above 20 which is all that matters for organ allocation. You will not qualify for the top 20%".
The key is advance knowledge gives more time for an informed, carefully considered, decision.
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Geez! I didn't know that to get a kidney I have to be smart in addition to lucky! My head is spinning from the higher math. ???
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I asked and the surgeon told me "you can find an on-line calculator for EPTS". It would have been more helpful for him to say "I don't know exactly, but at your age, it will be above 20 which is all that matters for organ allocation. You will not qualify for the top 20%".
I agree that that transplant program should be able to answer these questions but don't really see that as the surgeon's role, more likely the transplant coordinator. And from what I've read and experienced we don't have much contact with the transplant coordinator so most of that educations falls back on the patient.
I see the surgeon's education needs as to be learning about new innovations in transplant procedures, and the like. I'm sure some become very knowledgeable about the transplant rules but I'd group that in more with bedside manners, its nice and helps the patient but secondary to their role as someone who operates on you.
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True, but the surgeon did explain EPTS and KDPI to me - briefly, leaving off "you don't qualify for prime meat" when I asked if I would make the cut. He should know something that basic.
But, I agree. I had my hip done by a doc who was not that informative, rushed me through the pre-consult, but did an absolutely wonderful job on the surgery and did not miss any of my special requests (dialysis day after surgery; no transfusions unless I was about to die; no foley catheter). I'll take that over the nice guy but mediocre in the OR surgeon.