New UNOS rule

[willowtreewren]

I found out from our new transplant center that you may now be listed at more than one center in the same procurement area!

This is good news! The wait time at our new center is half that of our current center! And they are just 2 hours away. Going outside this procurement area would be much further away!

I thought I should pass this on to everyone who may not know!

Aleta

[Goofy]

Where do you live?  I'm on three lists in the same procurement area.  I've been on them for almost three years now.

[willowtreewren]

I'm in Tennessee. Apparently this rule just changed in 2009. One Tx center told me about it. The other started to tell me that I was wrong and then checked. 

"You are right," the transplant nurse sniffed at me! This is after she said that we would have to be removed from their list if we pursued listing at the other center.

But now her nose is out of joint and she is not returning a call....


And I am always the epitome of diplomacy.

Aleta

[BigSky]

I have been on the list 3 years and ever since I was on the list UNOS has allowed it.

I was told its not beneficial to be listed at more than one hospital in the same procurement area because all hospitals have access to the same organs and it goes to the one that is highest on the UNOS list regardless of where they are listed.

I was told one needs to be listed in multiple procurement areas for it to be a benefit.

[zona]

I am new to the transplant possibility and was wondering what is UNOS? My neph. just submitted my referral to the transplant team at Vanderbilt University. I am also in Tennessee just outside of Nashville.

[willowtreewren]

Hi, Zona,

Here is the link to UNOS: http://www.unos.org/

If you go to the data section you can find out lots of information about the transplant centers where you are listed.

The reason we wanted to get listed at the second center was because they accept live donors with creatinine clearance of >80, but our original center had a cut-off of >90. Since my creatinine clearance is 88, we wanted to get listed at the new one.

Aleta

[Goofy]

I wasn't thinking when I said I was on three lists in the same procurement area.  I'm on three lists but they are in different procurement areas.

If you intend to get on the list, first of all, don't do like I did.  My doc told me to get on and start accumulating time but of course I, me, didn't need a transplant.  That only happens to other people.  I eventually got on the list but now I realize I wasted months of time that I could have been accumulating.

Another mistake I made was thinking that all the hospitals in my area were all in the same procurement area.  I got on one list in the Madison, WI area.  There was also a hospital less than 90 miles from Madison so I ASSUMMED they took from the same list.  I eventually called to ask and sure enough they get from different lists.  So now I'm on two in the WI area.

So make sure you check to see how many hospitals in your area do transplants and check to see if they get organs from different procurement areas.

As you will see here in this forum, your feelings are common and there are people here to help guide you.