National Kidney list

[Atooraya]

I just became aware of a kidney transplant patient listed at USC whose date of entry into the national transplant list was moved back to the date when his eGFR fell below 20. This allowed him to move up in time on the national kidney transplant list.
Is there anyone who is aware of similar things?
I'd appreciate any feedback.

[okarol]

We were told the same thing. http://ihatedialysis.com/forum/index.php?topic=20615.msg389653#msg389653

[MooseMom]

Was there ever an answer to this?  My official listing date is 27 July 2010, but my egfr had fallen below 20 at least 7 months before that, and I have the documentation to prove it.  I have my first annual appt with my transplant coordinator on 7 November, and I have considered asking her about whether or not I can have my listing date amended.  Adding seven months of accrued time would be a big deal to me.  Do I have a case, and should I ask about this?  This is really important, so I'd really appreciate some guidance.  BTW, I am in the Chicago area if that makes any difference.

[okarol]

Los Angeles (and some other cities) have a pilot program making your wait time as soon as you began dialysis --  even if you were not waitlisted for years, the time starts the day you began treatments. Now this nurse at Jenna's center says it's also when your GFR is below 20. (I am still trying to find out if she is correct.) So the best thing to is to try and check to see what the rules are in your area.

[MooseMom]

Thanks for that.  I haven't been doing this long enough to know which policies are national and which are regional and which are just relative to a particular center.  So, I'll just ask when I see my coordinator in November.

[fearless]

would that mean I could move my time on the list (currently 18 months) back to 2003?

[The Noob]

we were told by 2 transplant hospitals that only 2 states count your wait time from first day of dialysis. michigan i one, don't know the other.