Some questions about double listing

[MooseMom]

I did do a search for a topic like this but didn't find what I wanted.  Apologies if these questions has been asked already.

If I understand it correctly (I've read the UNOS rules, and I this is what I've gleaned from them), you can transfer your wait time to your new center, and that becomes your primary center, and then your wait time at your previous (now, secondary) center is reduced to zero.  You begin accruing time at your previous center, and you begin further building your waiting at your new primary center.  What you cannot do is divide your wait time equally between the two.  Is that correct?

Next question.  Do you have to do two sets of annual texting, one for each center?  How is that coordinated?  Does your new primary center's requirements take priority?  Do you do their required testing and then make sure the results are shared with your secondary center?

Last question.  The monthly blood sample...do you have to send off samples to two different facilities?  Will you get two separate little white boxes that you have to return with your blood sample contained inside?

Thank you.

[cariad]

No to the two sets of tests - they can share results, just make sure they both get copies of records.

I don't know with the tubes, my guess is that if both facilities use Gift of Hope, then yes, you will get two boxes. Although, if one of these is Madison and you transfer your wait time, there is very little chance that Chicago will need those tubes. If a perfect match comes in they will send it to your primary centre, and otherwise your name will top the Wisconsin list ages before Illinois.

The hospitals are not going to acknowledge each other or help each other at all, so coordination is completely on you. But this is how it usually is anyway, even with single listings. Just keep on top of everyone as you already do.

So did you have your eval? How did it go?

Hope this helps.

[MooseMom]

Yes, Cariad, thank you...that does help.

And yes, one of those centers is Madison.  I have my eval on 23 May; that was their first available appointment!  Yikes!  I sent them a 25 page fax with every test result I could lay my hands on, and they had to read through all of that bumph before I could even schedule an appointment!

I am already listed at Rush, and they use Gift of Hope (as a matter of fact, we happened to pass by that facility coming home on the interstate from downtown Chicago; it was weird to see it!), but I seem to remember from looking at Madison's website that they have their own histocompatibility facility, so I am wondering if I will get two boxes from two different places.  Not that it poses a massive problem, but I am curious and just want to know what to expect.  But yes, the whole point of going to Madison getting on their shorter list, so I can see where Rush won't need the tubes.

Thanks again for your reply!

[bette1]

I was on dialysis both times I was double listed so it was pretty easy for me.  My center sent the monthly bloods to my Illinois center, and I had a extra vial drawn for Madison, which I mailed myself. 

Annual testing I had done at Rush and they faxed the results to Madison.  They were quite helpful.

[MooseMom]

Bette, I'm not on dialysis yet, so the vial gets mailed to my house each month; I get the blood drawn and then mail it myself.  So by your reply, I anticipate that I will get two boxes.  I guess I can just get two samples drawn at the same time and mail them both off at the same time.

I don't have any actual testing done at Rush.  I get all of my tests done locally and fax the results to Rush myself.  I suppose that if I do get on Madison's list, I will just fax the results to both centers?  I'm sure Madison will tell me what will happen; I know I am jumping the gun a bit, but I like to be prepared.  LOL!

Did you have your annual pre-tx appointment with both centers?

[bette1]

I had the annual exam at Rush for 3 years.  I moved my waiting time to Wisconsin and got my transplant a few months later.  I was very fortunate.  I ended up with a perfect match.

As far as annual testing, I'd think you would just fax the results to both centers.  Wisconsin is used to working with people from out of state so I'm sure they will not expect you to get all your tests done there. 

[MooseMom]

You're right, bette1; Wisconsin is used to having people from out of state, so I am sure they will tell me what they need me to do.  I hope I have the same good fortune that you have had!

[Restorer]

You can transfer the entirety of your time, or swap times at different centers, but you can't divide the time in any way.

I get two separate blood vials sent to my dialysis center (neither center uses Gift of Hope). I got one from UCLA in December or January (can't remember), and one from CPMC in January or February, after I got on the list.

As far as initial tests go, the center may choose to obtain test results from a previous center you were tested at, if the test was recent enough (within 6 months for most tests), and if you sign a release from one center to the other.

I don't have any experience with annual testing beyond the blood vial packets, but I assume that if both centers happen to want you to have a particular medical test within 6 months of each other (say, echocardiogram or colonoscopy), one test sent to both centers will suffice. Psychosocial tests or questionnaires/interviews with social workers probably need to be done individually.

[amanda100wilson]

I am in the process of setting up an evaluation with Weill-Cornell in New York because they are in the National Kidney Register scheme.  I am already listed with John Hopkins/UNOS paired donor scheme and the original list for Emory.  If I am told that I can't list at a third then I may transfer my time to one of the others.  I have eight years accrued at Emory but because of the distances to get to these other hospitals I am reluctant to switch my time to them.  Perfect match cadaveric transplants are offered nationally so it makes sense to stick on the Emory list because if one came up it would logistically easier to deal with Emory.  The only way I could get a cadaveric transplant if if it were a perfect match, so it's highly unlikely that I would get a cadaveric via one John Hopkins or Weill Cornell, but a slim chance that there may be a suitable live donor.