Multiple listing for kidney transplant

[okarol]

Multiple listing involves listing at two or more transplant centers. 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.

1. Inform your nephrologist that you will be multi-listing at out of region transplant centers and that he will have to complete a separate referral form for each center that will be sent or faxed to his attention.
       
2. Call each transplant center and ask to speak to the individual in charge of new transplant requests. Remember to write down their name and contact number. Give them your basic information and then ask questions, such as: will they accept out of region candidates; how many visits comprise their evaluation process (usually three separate visits); and what type of insurance coverage you will need to cover the medical expenses. They will most likely ask you some additional questions to pre-screen you. Be absolutely honest in responding to their questions as it will save you time and money later if it is determined that you are not a viable candidate for their transplant program.
       
3. Realize that multi-listing will cost you money. You will have to pay for your own travel, living, food and transportation costs. Remember, after you receive your transplant, you will have to reside close to the transplant center for at least 4 to 6 weeks, or even longer. Most transplant centers require, at the first evaluation, that you also bring the person who will be your caregiver after the transplant. Most insurance companies (except HMO) will pay for your out of region pre-transplant testing, as it will save them money later on when you stop dialysis (approximate cost for dialysis per year is $80,000.00).
       
4. You will have to prove to the transplant social worker that you have the financial ability to pay for your travel and living expenses and also the financial ability to pay for your medications. The good news is that Medicare along with any supplemental insurance is one of the best types of coverage you can have and is mostly acceptable around the country. If all you have is Medicare, then you may be liable for the deductibles that can become enormous. Therefore, if you cannot afford to travel to another region for a transplant, do not waste your or the transplant center staff’s time.   

Be prepared for numerous forms to be completed both before your first evaluation appointment and while at the center. A word of advice: if you decide to multi-list, start compiling your medical records, i.e., hospital records; physician records; and any immunization records. All of the transplant centers will require a dental clearance, therefore, if you have not seen a dentist in 6 months, you should go and determine if there are any problems and get them fixed. Once you have all of these records, make copies of them, as it is quite a job to compile all of these records.
 
This article is just an overview of the process of being multi-listed. You should be aware that the UNOS Executive Committee is going to review this process, as to its propriety, sometime in the first quarter of 2010,

see more here: http://ihatedialysis.com/forum/index.php?topic=16705.0

[Rerun]

Thanks Karol.

                                   

[KraigG]

I'll be listing in Chicago in the next few weeks. All I need is a dental exam, and a colonoscopy. the doctors there told me I'd need to be in the area afterwards for SIX MONTHS post transplant.
Though I live in Southern California, the wait here is just unbearable. 4-6 years, I've been told, and only 18 months or so in Chicago. Looks like I'll be staying with Mom for a few months

[okarol]

We live in Los Angeles and Jenna waited 3 years before being multiple listed in San Diego, where she started getting calls right away. We stayed in La Jolla for 5 weeks (came home a couple weekends) and then went back every 2 weeks, then 3 weeks over the next 6 months. Have you checked the data on the OPTN ebsite to see how long the wait is in Chicago?

[KraigG]

Karol, 18 months in Chicago. Here's hoping you're not listed at UCLA, as I get the impression they're not really up to snuff on the latest technology.

[okarol]

UCLA actually has the most incredible labs in the world, and they are now partnering with the National Kidney Registry, which is facilitating chains of donors and recipients. The problem with UCLA is that they are over-burdened with a huge patient population and not enough staff to take care of them all. So living in L.A. is a challenge - the wait time for a kidney from a deceased donor is now 5 to 8 years -  and that's why we originally switched from USC to Scripps Green Hospital (San Diego area) for Jenna's transplant (ended up bringing a living donor.)

[bette1]

I'm  from Chicago and the wait time at my center for O was 6 years.  I am sure I varies from center to center.  I actually multiple listed in Wisconsin and transfered my waiting time there so I got my kidney after 3 years.  The 18 month wait time seems too good to be true.

[okarol]

This excerpt is from UNOS: http://www.unos.org/docs/Multiple_Listing.pdf

What is multiple listing?
Multiple listing involves registering at two or more transplant centers.
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 atmore 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
9 months 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 have 15 total months of waiting time
and assign 5 months to Center A and 10 months to Center B.)
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.

[Marina]

I'll be listing in Chicago in the next few weeks. All I need is a dental exam, and a colonoscopy. the doctors there told me I'd need to be in the area afterwards for SIX MONTHS post transplant.
Though I live in Southern California, the wait here is just unbearable. 4-6 years, I've been told, and only 18 months or so in Chicago. Looks like I'll be staying with Mom for a few months

OLD POST   BUT  WORTH  GIVING  MY  TWO  CENTS!

Kraig,
since you're in southern  CA,  did you  know  UCDavis  (in  Sacramento, CA)  has an 18 month list  for  a kidney?

A  patient  in my unit had  been listed  at  UCSF  for over  4yrs  and  decided to  go  to  UCdavis,  got the  call in  6 months.

[gregory]

I was going to multi-list. I was told that sometimes the centers won't work as hard to get you a kidney if your on two lists. The figure they'll  let the other center get you one. Plus you have to almost move to be by the center. Also I was told that U.N.O.S. is changing their crtieria making it harder for people over 65 to get kidneys.     

[okarol]

When you multiple list you have to choose your primary center where you first accumulate or move your wait time to. It is not up to the centers to decide who gets the kidney. Here's more info:
Organs are allocated nationally based on a complex medical formula that is established by transplant doctors, public representatives, ethicists, and organ recovery agencies. UNOS (the United Network for Organ Sharing) maintains the list of patients waiting for a transplant. A donor's blood type, tissue type, body weight, and size are matched against patients on the list. If there are multiple matches, priority is given to the sickest patients or, in the case of kidneys, those who have been on the waiting list the longest. Factors such as race, gender, age, income or celebrity status are never considered when determining who receives an organ.
From: http://www.donatelifecalifornia.org/about/facts/faq/#faq_28

[LostWife]

We multiple-listed at Georgetown, UMD Med Center, and at Columbia Hospital in NYC.  We transferred all of our waiting time to UMD, then we got new medical insurance and found out that UMD is not covered!!!  However, we go on medicare starting March - April, so maybe we should just leave it alone? 

[okarol]

Hi LostWife,
If you don't have a living donor to be evaluated you might just wait until the Medicare kicks in. But if you do, Medicare will pay now. Have you discussed this with the transplant coordinator? The advantage of having 2 payers is that you will have very little out-of-pocket expense, which can be significant. I know the who process is mind boggling! 

[okarol]

UPDATE: UNOS changed the link for the Multiple Listing Brochure - it's now here http://www.unos.org/docs/Multiple_Listing.pdf

[vanessa]

i am going to be placed on the list on the 12Th could someone tell me what to expect? what medical tests are required and what does it intail? i was told i will be meeting with the surgeon nurse transplant coordinator social worker and someone who handles the financial end. thank you Vanessa

[okarol]

i am going to be placed on the list on the 12Th could someone tell me what to expect? what medical tests are required and what does it intail? i was told i will be meeting with the surgeon nurse transplant coordinator social worker and someone who handles the financial end. thank you Vanessa

Most of what to expect is in the other thread you posted in.
http://ihatedialysis.com/forum/index.php?topic=21312.0
Every center is different. Jenna met with the transplant coordinator, social worker, finance office, surgeon, nephrologist and nutritionist.
They did blood tests, ultrasound, chest x-ray. She was required to prove her dental and gynecological checkups were current and that she had no illness/issues that needed to be dealt with before a transplant. They wanted records from her nephrologist, dialysis center and urologist.

[vanessa]

Thank you so much ! It has been awhile since the dentist or I have been to have a pap with the P.K.D. it sorta took over I guess I better make some appointments!!

[The Noob]

we were told at U of Michigan (ann arbor) that they start your wait time from your first time on dialysis.
and that there are only 2 states that do this.
however, U of M has a wait time of 5-7 years! toledo is only 18 months for O/A type. but they don't start wait time till your approved for list.

[okarol]

we were told at U of Michigan (ann arbor) that they start your wait time from your first time on dialysis.
and that there are only 2 states that do this.
however, U of M has a wait time of 5-7 years! toledo is only 18 months for O/A type. but they don't start wait time till your approved for list.

That's an important distinction, but it still seems like you'd have a better chance in Toledo, numberwise.

[graceb]

Hello -- any thoughts on best transplant center for a simultaenous kidney pancreas transplant? My brother is listed at Cedar's in LA. He's considering UCSD, Mayo Phoenix and possibly UC Davis due to shorter wait times, but we want to make sure these centers have good success rates. Would love to hear form others who have had transplants at these centers or had any experience with them.

Thank you!

Sincerely,
Grace

[LarryG]

I live in Chicago. The wait for me was 5 to 7 years for O positive. What hospital were you listed at that told you 18 months? I also was going to get listed at other hospitals and out of state because of the long wait. Fortunately I found a altruistic donor.

[MooseMom]

As you all may remember, I've been struggling with the choice between accepting a pre-emptive ECD kidney (should one become available in time) and/or beginning dialysis (when it becomes necessary) and waiting for a "good kidney".

I had my bi-monthly neph appt yesterday, and I decided to ask for his thoughts on the matter since he has known me for longer than anyone else in my medical team.  I asked him which posed the lesser risk to me.  He told me that it depended on the ECD kidney and that I should have a healthy kidney.  Well, I said, I already know that, but the wait list is 3 - 5 years, or at least it was that long when I got listed last year, but it's now 4 - 6 years.  So he told me, and I quote, "I want you to get on the list in Madison.  There's not much worth anything in Madison, but they have an excellent transplant program with a good gene pool (that was a bit of a joke) and shorter wait times."  So, he's going to start the paperwork to get me listed at Madison along with Rush where I am listed now.

This sort of took me aback as I read it as saying that he doesn't want me to go on dialysis if at all possible.  He didn't "recommend" Madison...he said flat out, "I want you get on the list in Madison."  He was quite adamant.  Do most nephs do this?  Do most nephs tell you where they think you should be listed and in how many areas?  I had really expected him to say that starting dialysis wasn't all that bad and that I could do it for a few years while waiting for a good kidney, but that's most definitely NOT what he said.

Anyway, I have to admit that listing at a second center in a different area feel sorta overwhelming.  I don't have a "caretaker" or anyone to do all of this stuff for me.  I've just finished my first year's worth of testing and just last month had my first annual appt with the tx center who cleared me for another year, so all of my bumph is in order.  My neph said he'd have his nurse start the proceedings, but can anyone give me an idea of what I will probably have to do?  I'm sure I'll have to go to Madison and meet with the tx people, but other than that, does anyone have any advice/thoughts/anything?  Getting listed at just one center has been such a long slog; to have to do it all over again for a second tx center feels overwhelming.  I know, I know...ya gotta do whatcha gotta do, but just thinking about it makes me want to hibernate.  Madison, WI in winter.  Lovely.

Thanks to anyone who has any sort of reply/reassurance.

[Restorer]

Personally, I'd say the only good part of being on dialysis before getting a transplant might be better appreciation of the transplant when you get it.  I'm not saying to take an ECD kidney - I wouldn't. There isn't a lot of data on how long ECD kidneys last, but with the data I can find, it looks like only 28% of ECD kidneys last 10 years, compared to 45% of non-ECD kidneys. I don't like those odds.

My first neph told me to get listed at UCLA. Said he'd refer me and have them call me. Never gave me any other options for transplant centers, so I assumed UCLA was the best by far in the area. I should've suspected something when the never called me, even after repeatedly bugging my neph. I had to call them, 2 years later.

My last neph (before I moved) recommended UCSF for multiple listing after UCLA summarily rejected my donors. When I got up here, I went with CPMC instead because they have a local outreach clinic that would make things much easier.

I don't have anyone to help me through all this either, really - though I don't feel like I need one. UCLA was a huge hassle, but CPMC seems much easier. The hardest part now seems to be getting UCLA to send over their blood typing result (as the second sample - the first one was taken at my evaluation), and then I'll be listed at up here. It was so much easier the second time around - maybe because I've already been through it, maybe because this center makes it easier.

You can probably have a lot of your information sent over from your current transplant center to speed up the listing process in Madison.

[MooseMom]

Thanks for that, Restorer.   I don't really need anyone to help me get through all of the hoops, but sometimes I read the Spouses and Caregivers' forum and get really jealous.   I just can't imagine anyone helping me get to appointments or getting my meds or doing my research for me.  Not that I'd really want that; these things are best done ourselves, but sometimes I just get tired of it all.   Moan moan moan.  But as far as being listed at a second center, well, I guess I've already done the hard part in getting listed at all.  I guess I just balk at the thought of more coordination, bureaucracy and paperwork. 

For instance, I get a box each month from Gift of Hope with a vial inside; I have to submit a blood sample each month.  Gift of Hope serves Illinois and Indiana, but since Madison is in Wisconsin, will I have to send a sample to a second Gift of Hope-like organization that serves that area?  It's these little details that I think about, and lots of little details coalesce into a big mess!

My neph said they'd start on the paperwork, but should I call Madison and get/give some preliminary info myself?  Or should I wait for the neph's office to do their thing (sounds dangerous to me!).

Well, it's Friday afternoon, and I think I'll just let it go for now and think more about it on Monday.  All of this pondering is exhausting.

[Cordelia]

Hmmm wonder if that is even an option in Canada. I doubt it. I'm listed with one hospital.