Inactive by default for 70% of waiting time?

[Restorer]

The social worker at my dialysis clinic tells me I'm listed as inactive at CPMC "until re-evaluation." The only documentation from CPMC I can find about my status is the January 2012 letter informing me I've been added to the list, the average wait time for my blood type is "approximately 7 years", and that "in approximately 5 years, we will contact you to schedule a transplant re-evaluation appointment." The contact listed on that letter is the same as the pre-transplant coordinator listed on the contact sheet for "All patients LISTED-INACTIVE (UNOS Status 7)" (who is also highlighted).

I've left a message with my local outreach coordinator asking about their policies. While I wait, I'll ask here:

Is it standard practice at some transplant centers to hold candidates Inactive until they get near the "top" of the list? It seems like there's still a tiny, tiny chance that I could receive a kidney while still low on the list, if a perfect match shows up at my transplant hospital.

[ToddB0130]

That's odd.  I would think the only things that would inactivate you would be if you didn't follow through on a requested test or something. Hopefully you'll get it straightened out when you get a return call.

I was told by my transplant clinic that the average wait time was 4 to 5 years.  But I got a call in slightly less than 2 years that a perfect match had been found and I was transplanted.  But I was never inactive as far as I know.  I sent my lab kit every three months and followed up with a new nuclear stress test when it was requested.

GOOD LUCK !

[jeannea]

I don't understand that. You should be active unless there is a good reason to be on hold.

[noahvale]

^

[Restorer]

I'm aware of the upcoming changes, and hoping they'll be in place and running this year. That's why I'm especially concerned about being inactive for no good reason, because once the changes take effect, I expect I'll be catapulted much farther up the list.

No word yet from my coordinator. The transplant statistics made available by the SRTR don't include active/inactive status information for kidney transplant candidates, but they do include similar statistics for liver transplants, and guess what? CPMC has 86.7% marked "temporarily inactive", while UCSF, for example, has a more believable spread across the status scores.

Do you have anything I can point to that gives me more evidence the change in allocation policy is coming this year? All I've been able to find is "Effective date: To be determined, implementation pending programming" from the policy notice when it was originally approved in July.

[noahvale]

^

[Restorer]

I last spoke to the Kidney Transplant Manager at my facility in November.  At that time he was expecting the new regs to go into effect in February.   

I did some more searching, and it looks like they're aiming for the end of 2014 for the kidney allocation changes. They'll be training staff and hospitals in the new systems through 2014.

Tomorrow, February 1st, the new "plain language" policies come into effect - all of the UNOS policies have been rewritten with pretty much the same meanings, just easier to understand and put into practice. This does not include the new kidney allocation schemes. Maybe that's what your Transplant Manager was thinking of?

I'll definitely ask about all of it when I get ahold of one of my coordinators.

[Sydnee]

I'm with Noahvale talk to your coordinator to know for sure. Don't believe your dialysis clinic.
 Ed got told by his PD nurse that he was put on inactive for "financial" reasons at an appointment in July. I was worried. We called the coordinator the next business day. She reassured us that he was still active.
In October Ed got his kidney. He was the first in a chain. He had a friend go through the testing he wasn't a match for Ed but he was willing to do a paired donation it took a year but Ed got a kidney this last October from an altruistic donor and Jared gave a kidney to someone in December.  Ed was on the cadaver list for a little over 2 years when he got his live kidney.

[cattlekid]

All this stuff about dialysis clinic social workers giving misinformation gives me heartburn.   I found out somewhere on the Internet, can't remember how, about a study being done about transplant.  I contacted the study coordinator and just had an interview with her this past week.  She is the head of the transplant coordinators at Northwestern and is going for her PhD.  She is studying the coordinator role in the pre and post transplant process.  I gave her an earful in the hour that we spoke.

I didn't even THINK about the role of the dialysis center and their staff in the information/misinformation chain about transplant.  She did ask me who referred me for transplant and seemed shocked when I told her that I referred myself to Northwestern and had my intake appointment scheduled the day I had my catheter placement done.  My dialysis centers did nothing for me regarding transplant other than draw my labs until Northwestern stopped taking my labs because I was so far down on the list.