Days on UNOS

[RainingRoses]

I've asked my pre-transplant coordinator this question, but I never seem to get a direct answer. Maybe some of you know?

I have 1000+ days on the list.  The first year was at Emory in Atlanta.  My insurance company signed a new stop gap insurer and required me to transfer to Piedmont in Atlanta.  I now have two+ years at Piedmont.
 
I rarely talk with the pre-transplant coordinator, but she always says I have about 600 days on the list.  That is true of Piedmont time, but I did transfer that first year at Emory, and I have verified that it transferred.

So which figure do the transplant gods use to decide where I am on a list:  the 600+ at Piedmont or the 1000+ combined, and why doesn't my pre-transplat coordinator know that I actually have 1000+ days?  I've certainly told that enough times.

Thanks,
Pete
 

[paris]

I have never been told "days on list", just years.   Your time should transfer and your co-ordinator would be the one to address this problem. If she can't, ask for the manager of the co-ordinators.     They don't call patients often. Usually when they want us to update tests or verify something.  I call her once in awhile, just so she knows I am still around!    Hope you get a definate answer soon.l

[Jie]

I think patients need to sign a form to transfer waiting time. With a starting date and the current date, it is not difficult to estimate "waiting days".

[okarol]

UNOS maintains a toll-free phone information line for transplant candidates, recipients and family members. The number for Patient Services is 1-888-894-6361.

[RainingRoses]

Just wanted to update.  For some reason, the pre-tx coordinator "prefers" to use just the time at her hospital in general conversation.  She logged into UNOS and gave me the total time (including the first hospital), and the number was correct.  The coordinator could not explain her preference;  I suggested that it was confusing for patients on the wait list to be given an inaccurate number of days on the list.  She responded that essentially it was my problem. So, I'm choosing not to react her rudeness.  Wouldn't help me anyway.  BTW, I've always been told my wait time in terms of days on the list. 

Pete

[AtlantaPatient]

I'm glad you were able to confirm your total time on the waiting list.  Whenever I ask I've been able to get the exact number of days of credit I have.  That's absurd that the coordinator would 'prefer' to give out the number of days on the list at her center only as the total days on the list is the only relevant number. 

How has your experience been with Piedmont otherwise? I was actually on the list at Piedmont for 2 years and had to switch to emory a year ago due to an insurance change.  I'm generally unimpressed with every coordinator I've spoken with, both on the donor and recipient side.

[RainingRoses]

I've been more or less unimpressed with both Emory and Piedmont-- but for different reasons. 

Piedmont is far more personable.  I've yet to meet a doctor who is not accessible and warm and pleasant.  Same is generally true with the staff. The exception is the transplant support staff.  I found my assigned coordinator and my assigned social worker to be impatient, cold, and dismissive.  As long as I'm not dealing with them, no problem. 

Emory was a colossal joke.  It took me six months to get listed.  I am fortunate to have good health other than Alport's Syndrome which destroyed my kidneys.  I don't even have high blood pressure.  I had no problem "passing" all the tests.  Then I waited and waited and waited.  In the end, the supervisor told me that my papers had sat on the corner of the co-ordinator's desk -- for weeks.  She apparently pushed them to the side and forgot about them.  I'd have six more months on the list had Emory staff simply done their jobs.  I transferred to Piedmont because our insurance changed.

I try to look on the bright side;  the doctors at Piedmont are excellent.  I called my coordinator a week ago and left a message about new insurance. She still hasn't returned the call.

Argh,
Pete