Wait times under new system - do you have an update on your position?

[iolaire]

Last week I talked to my kidney coordinator because I've not received any calls since last summer.  The good news is that that was just a fluke and nothing changed after my last call. (Beyond the new system being released in December.)

I asked her how I stood now and she made the comment that they are now transplanting patients who have been on dialysis for 10 years!  And also the extended criteria kidneys I received calls on in the past are basically gone now (under new system), so I will not receive calls on those anymore.

Have any of you received updates/estimates on where you stand in the new kidney allocation system?

Background: I've been listed for three years last August 2014, and am in my second year of dialysis (started December 2013).  I received a call before I started dialysis and thus thought I was close to getting a kidney and dialysis would be short term.  I received about four calls in 2014, including one I missed because the phone was out where they wanted me to respond within 15 minutes.  It feels as if my odds are lower even though my scores under the new system are high just because my wait time is shorter than people new to the list that have been on dialysis for a long time.  So I think I need to change my outlook and view dialysis as long term.  Maybe its time to look at a center downtown near where I work so I can cut down on the commute time and get home on my own via public transportation (rather than having my wife pick me up).  Maybe its time to think about in-home dialysis - but I find travel with in center dialysis easy.  etc....  This is not a big issue to me but just a realization that I need to change my perspective to a longer term under dialysis.

[Rerun]

 

[*kana*]

I was 38 when I went on the list and have been on it for 6years, 6mths and have NEVER been called.  My PRA is 0 and I am 0+.   From what I understand is the way the new system works is since I have been waiting so long it now works against me.  They want to give the top 20% perfect kidneys to people that are young and haven't been on D as long.  That's really hurts me because I was younger and could have received one then vs biding my time that is now going against my chance of getting one. 

My sister with the same kidney disease had a PRA of 88 and is 0+ and got a 6point antigen match 4mths after being listed. 

[okarol]

I was 38 when I went on the list and have been on it for 6years, 6mths and have NEVER been called.  My PRA is 0 and I am 0+.   From what I understand is the way the new system works is since I have been waiting so long it now works against me.  They want to give the top 20% perfect kidneys to people that are young and haven't been on D as long.  That's really hurts me because I was younger and could have received one then vs biding my time that is now going against my chance of getting one. 

My sister with the same kidney disease had a PRA of 88 and is 0+ and got a 6point antigen match 4mths after being listed.

I think that is really strange *kana* because you seem like the perfect candidate. What explanation does your transplant hospital give for this?