Question About Being Multiple Listed within your UNOS Region

[joezee]

I've been on a waiting list for just over 2 years at a transplant center 1.5 hours from my home. Is there any advantage or disadvantage in being listed at a second transplant center about the same distance from home? I'm confused because my clinic social worker "thinks" that although my waiting time would also apply at the second transplant center I would automatically drop to the bottom of the list at my original center. I can't find any information regarding this on the UNOS website. Can anyone help? Thanks.

[boxman55]

I'm am not sure about dropping to the bottom of the list at your current choice (I doubt that) but yes a second listing would be helpful. For me I am on the list here in Milw and also on the list in Madison 2 hours away. My feeling is.. you have two teams thinking about you. Which as we all know, is better then one...Boxman

[okarol]

How can your social worker not know the answer? That's scary!
You can print this out for reference or go online for the brochure.

This is from the UNOS website http://www.unos.org/resources/policyBrochures.asp
Q & A for Transplant Candidates and Families about Multiple Listing and Waiting Time Transfer

What is multiple listing?
Multiple listing involves registering at two or more transplant centers in different
local areas. Since candidates at centers local to the donor hospital are usually
considered ahead of those who are more distant, multiple listing may increase
your chances of receiving a local organ offer.

Could multiple listing shorten my waiting time for a transplant?
Some studies suggest multiple listing can shorten the average waiting times of
kidney transplant candidates by several months. This does not guarantee that
every multiple-listed patient will have a shorter waiting time.

Many factors affect how long you might wait for a transplant. Of course, not
enough organs are donated each year to meet everyone’s needs. Everyone in
the transplant community shares the goal of increasing organ donation to save
and enhance more lives.

Other waiting time factors include how urgent the patient is and how closely
the donor and candidate match on body size and blood type. Some kidney and
pancreas candidates have a “highly sensitized” immune system because of earlier
transplants, pregnancy or multiple blood transfusions. Highly sensitized patients
will only be good matches for a limited number of organ offers, so they often
wait longer than non-sensitized candidates.

Are there any restrictions?
OPTN policy allows multiple listing.  It will still be up to the individual center to
decide whether to accept you as a candidate. You probably would not benefit from
listing at multiple centers in the same local allocation area (which is usually the
OPO).  This is because waiting time priority is first calculated among candidates
at all hospitals within the local donation area, not for each hospital individually.
 
Some transplant programs may not accept multiple-listed patients. Others may
set their own requirements for multiple-listed candidates. If you are considering
multiple listing, you should ask the transplant team how they handle such requests.
What is involved in multiple listing?As with any transplant listing, you must be
considered and accepted by a transplant center. This involves completing an evaluation
and agreeing to meet any conditions set by the program (for example, ability to come to the hospital
within a certain time if you are called for an organ offer).
 
You might check with your insurance provider to see if they will reimburse the
cost of additional evaluations. You should also consider other costs associated
with listing that insurance may not cover. For example, you may need to pay for
travel and lodging if the center is further from your home. You should also
find out whether your post-transplant medical care will be provided at the center
or can be transferred to a facility closer to your home. In addition, you would need
to maintain current lab results and contact information for each transplant
program where you list. Each program will need current information should
they receive an organ offer for you. Through the OPTN database your center
can know if you are multiple-listed but may not know the other hospital(s)
where you are listed.

If I list at more than one center, how is my waiting time considered?
As soon as a center accepts you as a transplant candidate, your “waiting
time” begins. Depending on the organ you need, waiting time may be a factor
in matching you for an organ offer. Waiting time is a more important factor
for certain organ types such as kidney and pancreas. It is less of a factor
with heart, liver, and intestinal organs.  For these organs more priority is
given for factors such as medical urgency.

If you are a lung transplant candidate age 12 or older, waiting time will not
be used at all in matching you with organ offers. Lung transplant priority is given
for a combination of medical urgency and expected post-transplant survival.
Waiting time is a factor for lung transplant candidates age 11 and younger.

The longest amount of time you have waited at any center is called your
primary waiting time. If you list at multiple centers, your waiting time at each
center will start from the date that center listed you. OPTN policy allows you
to transfer your primary waiting time to another center where you are listed,
or switch time waited at different programs. (For example, if you have waited
9months at Center A and 6 months at Center B, you could switch your time
to have 6 months at Center A and 9 months at Center B.) 

You are not allowed to add up or split your total waiting time among multiple
centers. (Again, assume you have waited 9 months at Center A and 6 months
at Center B. You could not assume you have15total months of waiting time
and assign 5 months to Center A and 10 months to Center B.)

Sometimes a transplant program may inactivate for a period of time (for
example, to replace a key member of the transplant team who leaves) or
close its operations. If this happens, the OPTN requires that the program
contact you and provide for your continuing care. If the inactivation is
short-term you may choose to remain listed until the program becomes
active again, but you will not receive organ offers during that time. If the
program closes, the staff will work with you to arrange care at another center
without loss of your primary waiting time.

Where can I get additional information?
You should first contact the staff of the transplant program where you are
listed or want to be listed. They will have the most specific information
about how they handle requests for multiple listing and/or waiting time
transfer. They will also make any needed arrangements with UNOS.
 
UNOS maintains a web site, Transplant Living, which contains extensive
information for transplant candidates and recipients as well as their family
members. The address is www.transplantliving.org.You may also wish to
visit the OPTN web site at www.optn.org.

UNOS also maintains a toll-free phone information line for transplant
candidates, recipients and family members. The number for Patient Services
is 1-888-894-6361.
Any request to transfer or switch waiting time must be approved by the
transplant center(s) involved. Most transplant programs require a written
request to swap or transfer waiting time, which will then be considered by
the transplant team.

If I do not multiple-list but transfer my care to another hospital, what happens?
If you want to end your listing at one program and transfer to another, your
primary waiting time can be transferred as long as you coordinate with both
programs. The new transplant program will probably ask you to request in
writing to transfer the waiting time. Keep in mind that if you end your listing
at one program before another program losing all previous waiting time.

[joezee]

Thank you Boxman and Okarol. I too found it hard to believe that my Social Worker didn't know, but like the rest of us she's human. The real problem is that I waited two years before I even thought about a second listing. When I contacted my insurance coordinator she said "no problem" and told me my wait time would be transferable. For unkown reasons until yesterday I ASSUMED without asking that meant my two years would apply at both centers. Obviously from the information Karol just provided I was very wrong, and there's no point in continuing my application at the second center now. Hindsight being 20:20 I should have listed at the second center as soon as I was accepted at the first. May others not make the same mistake I did. Speaking of making mistakes because of not taking the time to self-educate, I had no reason to question my first Neph when he told me I had to be on dialysis in order to apply for the cadaver transplant list. I learned from my insurance company that the Neph was very misinformed and that one can apply for an evaluation when their kidney function reaches 20%. Had I known that I may never have had to start dialysis 2 years ago. And I'm the one who preaches "taking control" of our own situation. Hopefully I'll do a better job of practicing what I preach. Thanks again for your help.

[okarol]

I didn't know a lot either, and learned the hard way!

We had never heard of multiple listing until Jenna had been on dialysis for 2 years. The wait time here at USC in Los Angeles is 6 - 8 years, but when we multiple listed in San Diego it was 3 - 5 years. That's when we decided to switch her primary wait time - making Los Angeles the "new" center to begin accruing time, and moved her 2 yr. 2 months over to Scripps. Scripps even gave her a pager! USC had never done anything like that because we were so far down the list. She got 2 calls as a back up within 4 months, so we knew she was going to have a better chance. We also listed in San Francisco, but the wait there is similar to Los Angeles. We were going to also multi-list in Phoenix and Seattle as the next choices, but it was during that time that I found a living donor.

I was also clueless about getting listed at 20%, which would have made Jenna eligible as a minor (she started dialysis 3 weeks after turning 18 years old.) Another thing I didn't know was that you could do a pre-emptive transplant from a living donor - the doctor at Children's Hospital always spoke in terms of beginning dialysis first. If I had known I would have pushed to find a living donor sooner.

You have a chance to educate your social worker, it might help someone else someday.

Good luck!

[paris]

That is how we are all learning--the hard way!    I am listed at two centers. The first has a average wait list of 6 years. The second is about 3 hours away and their average wait is 2 years.   They do more than three times the transplants a year than the first center.  No one told me any of this  You have to make lots of calls, research, ask tons of questions. So, even though I listed at the 2nd center a year after the first, they still have a shorter wait list.  Ask the centers directly what their average time is.  Isn't it amazing how much you end up by having to do yourself?  Thank goodness for IHD!

[kellyt]

Boxman, do, or did, you have to complete testing at both facilities?  Or did they take your information from your original team?

 

[paris]

I'll answer for my situation---they share some of the testing. The second center will have you meet the transplant co-ordinator, social worker, transplant surgeon, bloodwork and they will contact your nephrologist for any and all tests they have done. The process is much quicker than the first time.  I just had my "2 yr on the list" test at the first center and they will share the results with the second.  It really is an easy process when you go to a second center.   It definately gives you a better chance at a transplant.  Good luck and let us know what you decide.

[Romona]

I Don't think it would hurt to be on multiple lists. Different doctors and surgeons have different opinions. What one might think won't work, another might think it will. Where one might see a workable match another might not see. Does this make sense?

[boxman55]

Boxman, do, or did, you have to complete testing at both facilities?  Or did they take your information from your original team?

 

kelly, Paris hit it right on the head it was pretty much the same for me...Boxman

[okarol]

 

[paris]

I think this thread is always important.  So many are confused re: mulitiple listings.  Thanks Okarol for bumping this up.