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Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on February 27, 2010, 09:21:04 PM

Title: Multiple listing for kidney transplant
Post by: okarol on February 27, 2010, 09:21:04 PM
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
Title: Re: Multiple listing for kidney transplant
Post by: Rerun on February 28, 2010, 08:51:30 AM
Thanks Karol.

                                   :thumbup;
Title: Re: Multiple listing for kidney transplant
Post by: KraigG on March 08, 2010, 01:40:44 AM
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 :)
Title: Re: Multiple listing for kidney transplant
Post by: okarol on March 08, 2010, 10:24:10 AM
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?
Title: Re: Multiple listing for kidney transplant
Post by: KraigG on March 09, 2010, 01:55:55 AM
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.
Title: Re: Multiple listing for kidney transplant
Post by: okarol on March 25, 2010, 06:41:53 PM

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.)
Title: Re: Multiple listing for kidney transplant
Post by: bette1 on June 15, 2010, 11:10:52 PM
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.
Title: Re: Multiple listing for kidney transplant
Post by: okarol on August 18, 2010, 11:21:15 AM
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.
Title: Re: Multiple listing for kidney transplant
Post by: Marina on August 18, 2010, 07:30:06 PM
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.
Title: Re: Multiple listing for kidney transplant
Post by: gregory on December 19, 2010, 06:58:41 PM
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.     
Title: Re: Multiple listing for kidney transplant
Post by: okarol on December 20, 2010, 12:05:50 AM
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
Title: Re: Multiple listing for kidney transplant
Post by: LostWife on December 20, 2010, 08:19:20 AM
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? 
Title: Re: Multiple listing for kidney transplant
Post by: okarol on December 22, 2010, 04:43:22 PM
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!  :cuddle;
Title: Re: Multiple listing for kidney transplant
Post by: okarol on May 29, 2011, 03:47:46 PM
UPDATE: UNOS changed the link for the Multiple Listing Brochure - it's now here http://www.unos.org/docs/Multiple_Listing.pdf
Title: Re: Multiple listing for kidney transplant
Post by: vanessa on May 29, 2011, 06:21:30 PM
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
Title: Re: Multiple listing for kidney transplant
Post by: okarol on May 29, 2011, 09:18:11 PM
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.
Title: Re: Multiple listing for kidney transplant
Post by: vanessa on May 31, 2011, 07:24:39 PM
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!!
Title: Re: Multiple listing for kidney transplant
Post by: The Noob on July 03, 2011, 09:45:34 AM
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.
Title: Re: Multiple listing for kidney transplant
Post by: okarol on July 03, 2011, 01:22:54 PM
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.
Title: Re: Multiple listing for kidney transplant
Post by: graceb on October 02, 2011, 11:06:08 PM
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
Title: Re: Multiple listing for kidney transplant
Post by: LarryG on October 03, 2011, 10:35:06 PM
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.
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 09, 2011, 10:45:02 AM
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. :-*
Title: Re: Multiple listing for kidney transplant
Post by: Restorer on December 09, 2011, 11:44:09 AM
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.  :rofl; 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 (http://www.ustransplant.org/annual_reports/current/511b_ki.htm) last 10 years, compared to 45% of non-ECD kidneys (http://www.ustransplant.org/annual_reports/current/511a_ki.htm). 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.
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 09, 2011, 11:57:53 AM
Thanks for that, Restorer. :2thumbsup;  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. :rofl;  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.
Title: Re: Multiple listing for kidney transplant
Post by: Cordelia on December 09, 2011, 12:32:47 PM
Hmmm wonder if that is even an option in Canada. I doubt it. I'm listed with one hospital.
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 09, 2011, 04:11:12 PM
Hmmm wonder if that is even an option in Canada. I doubt it. I'm listed with one hospital.

I had not seriously considered listing with a second center.  Once I heard that the wait was 3-5 years, and once I realized that I wasn't going to get a living donor, I guess I just put it all out of my mind.  I had done everything I could think to do to get on the list and then stay on the list, and I just didn't think it was necessary to go elsewhere.  But I looked up the waiting list stats today for both Rush and U of W in Madison, and as of Dec 31, 2010, the median waiting times were 45 months and 11 months respectively.  That's an enormous difference.  I've already been waiting 16 months, so if my primary waiting time can be transferred to Madison, then I might save myself a couple of years.  All I can do is make the effort, I guess.  But again, I have to rely on others to do their part, and ugh...I hate having to chase other people to get their act together.
Title: Re: Multiple listing for kidney transplant
Post by: LarryG on December 09, 2011, 06:00:16 PM
Hmmm wonder if that is even an option in Canada. I doubt it. I'm listed with one hospital.

I had not seriously considered listing with a second center.  Once I heard that the wait was 3-5 years, and once I realized that I wasn't going to get a living donor, I guess I just put it all out of my mind.  I had done everything I could think to do to get on the list and then stay on the list, and I just didn't think it was necessary to go elsewhere.  But I looked up the waiting list stats today for both Rush and U of W in Madison, and as of Dec 31, 2010, the median waiting times were 45 months and 11 months respectively.  That's an enormous difference.  I've already been waiting 16 months, so if my primary waiting time can be transferred to Madison, then I might save myself a couple of years.  All I can do is make the effort, I guess.  But again, I have to rely on others to do their part, and ugh...I hate having to chase other people to get their act together.
What is the reason a living donor is out of the question?
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 09, 2011, 09:44:15 PM
LarryG, my husband is ABO incompatible, and it is possible that he is pre-diabetic; type 2 diabetes runs in his family.  I have no siblings and my parents are both deceased.  I have an adult son, but he lives abroad plus he is high-functioning autistic.  I have some cousins but have not seen any of them in decades.  The only relative I have who has mentioned donating is, I suspect, secretly an alcoholic and would not be eligible.

My husband has posted a message on his employer's electronic message board about being tested to be possible donor, but that was about six or seven months ago, and he's had no reply.  Of course someone may miraculously come to the rescue, but my feeling is that if anyone was going to offer to be tested, they would have contacted me by now.  So, a living donor isn't "out of the question", but no one has answered so far.  I can't wait around and wait for someone to have mercy upon me.
Title: Re: Multiple listing for kidney transplant
Post by: bette1 on December 11, 2011, 03:12:13 PM
I was in your same boat with having no living donor, so I went to Madison and transfered my waiting time from Rush.  I had been on Rush's list for about 2 years when I made the transfer.  I got my kidney 6 months later through Madison and it was a perfect match. 

With both my transplants, my doctors urged me to get listed at Madison.  It was an easy process because they took the test results that I'd done for Rush, and one gift of hope box per month.  Since I'd transfered my waiting time to Madison I was essentially at day one of the Rush list so I didn't really expect a call from them anyway.

I went to Madison for an interview and some blood work, but it was pretty easy to transfer my wait time I have had a good experience so far.  The biggest drawback for me using Madison is having to go to follow up appointments every few months, but that should go down to once a year.

With the first transplant I'd double listed at the same time for both Madison and U of C and got called for transplants at both centers the same day!  (This was 1992, so the waiting lists were much shorter than they are today. ) I ended up getting my first transplant in Madison simply because they called me first.

Others have had different experiences at Madison, but the main reasons I transfered my wait time was the long waits in Chicago, and the fact the Rush were pushing extended criteria kidney transplants HARD.  I was just 42 at the time and there was no way I was going to risk a second transplant with a EC kidney.
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 11, 2011, 04:39:33 PM
Oh Bette, thanks so much for your post as I am in pretty much the same situation, as I'm sure you've read.  My neph DID mention Madison when we first talked about me getting listed, but I just dismissed it because it was, well, in another STATE!  I just didn't realize that it would really not be logistically more difficult to get to Madison than it is getting to Rush, particular during the rush hour (no pun intended). 

I've noticed on U of W's website that they have an email form you can use to request they contact you re getting listed, so that's my project for tomorrow.  Even though my neph said they'd start the paperwork, I'm going to be more pro-active and get started asap.

Thanks for answering my question re the gift of hope boxes.  That's good news.

Anyway, thanks SO MUCH for the info!
Title: Re: Multiple listing for kidney transplant
Post by: LarryG on December 12, 2011, 09:56:10 AM
I applied in Madison and know several people who were transplanted there. They were very friendly and worked well with my other hospital. The only problem was since I had medicaid and was out of state the 20 percent would not be covered and without insurance I would had to cover that out of pocket. However the day before I was to go to Madison for evaluation my living donor was approved in Chicago.
Title: Re: Multiple listing for kidney transplant
Post by: Cordelia on December 12, 2011, 10:50:01 AM
Hmmm wonder if that is even an option in Canada. I doubt it. I'm listed with one hospital.

I had not seriously considered listing with a second center.  Once I heard that the wait was 3-5 years, and once I realized that I wasn't going to get a living donor, I guess I just put it all out of my mind.  I had done everything I could think to do to get on the list and then stay on the list, and I just didn't think it was necessary to go elsewhere.  But I looked up the waiting list stats today for both Rush and U of W in Madison, and as of Dec 31, 2010, the median waiting times were 45 months and 11 months respectively.  That's an enormous difference.  I've already been waiting 16 months, so if my primary waiting time can be transferred to Madison, then I might save myself a couple of years.  All I can do is make the effort, I guess.  But again, I have to rely on others to do their part, and ugh...I hate having to chase other people to get their act together.

I never was given the option, never even thought of it. Is this something you have to 'request' or JUST presented to you up front. .....I don't understand it in its entirety. Should I be chasing my transplant hospital to get me signed up elsewhere also?     ???   Does one have to go through headaches of testing all over again thru the 'other' hospital or can they just go with your transplant work up tests that were done at the original hospital?   And lastly, should I feel guilty listing with dual hospitals even if it were allowed?    So many questions! LOL
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on December 12, 2011, 11:12:28 AM
Cordelia, I can only tell you about my experience; I don't know how it will translate into Canadian. :P

Here in Chicago, there are several transplant centers, Rush, Northwestern, Loyola and University of Chicago to name the biggest ones.  It doesn't make sense to list at more than one of these because they are served by the same OPO...Organ Procurement Organization.  But the University of Wisconsin at Madison is in its own OPO which is separate from the OPO that serves Rush (where I am listed), so that's why it makes sense for me.  I am fortunate enough that I can travel as easily to Madison as I can to downtown Chicago, perhaps even more so, so again, it makes sense for me.

It was my neph who told me I should be listed in Madison, so I am guessing that I am not the first patient he has had that he told the same thing to.  Because of my insurance (a problem you don't have in Canada!), I need a referral to a tx center.  I had to have a referral to have an eval at Rush, and I'll have to have a referral to have an eval at Madison.

My neph said I could have all of my test results sent to Madison and not have to retest.  That's just a waste of money, anyway.  But I will almost certainly have to go up there and have an initial evaluation, which is fine.  I would want to meet them, anyway, before I decided to list with them.

As for guilt, you know, I kinda thought the same way.  There is nothing wrong with my team at Rush, although they have dropped the ball on a number of occasions.  They have a good program staffed with good people, but their waitlist is about 10 times longer than the waitlist at Madison, so I don't think they will miss me!  LOL!  They have plenty of other patients to serve; I'm just a drop in the proverbial bucket.
Title: Re: Multiple listing for kidney transplant
Post by: rileysmom on December 12, 2011, 01:29:21 PM
i am from chicago as well and am on teh wait list at northwestern memorial and am 0 positive and i was told the wait time is 7-8years. i do know that university of wisconsin ==madison the wait time there is aprox. 2years give or take a few months. i am in the process of being listed there as well. where in chicago did you go that was only 18months. even my social worker told me the wait time in chicago is long
Title: Re: Multiple listing for kidney transplant
Post by: KraigG on January 11, 2012, 12:41:50 AM
The team in Madison is good. At least it was in 2001. I spent SIX months at the hospital then, after a medical error by another transplant facility in Milwaukee. I had to have my good, working pancreas removed, which was pretty depressing. My family had a two hour drive to get to see me, and when it snowed, which it did, a  lot, I didn't get to see them very often.

But Madison was a good facility. They knew what they were doing, and the staff was very caring. A+
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on January 11, 2012, 09:08:44 AM
That's good to know, KraigG; thanks for posting that.  I'm sort of in limbo right now...I'm waiting for them to receive my records.  Wait wait wait.
Title: Re: Multiple listing for kidney transplant
Post by: rileysmom on January 11, 2012, 10:05:43 AM
I am in the process of getting put on the list at university of wis. madison. my evaluation is on march 2, i have to say the people i have spoken to there have been so helpful and nice. and they are constatnly calling me to see if they can help me get any of the paperwork, labs, etc that they need for me so i dont have to do a ton of foot work . i am also on the list at northwestern here in chicago and have been for about 2years and i have to say they have dropped the ball on more then one occassion and they rarley get back to me when i call them for whatever reason , i usually have to chase someone down to get whatever info i am looking for or to update information for them. i have to say so far i am so pleased with madison and cant wait til i have my wait time transfered. the social worker at my dialysis center suggested i get put on the waitlist there and has told me that there have been quite a few people she referred there that have recieved a transplant with in a year after getting put on the list. so here's hoping
Title: Re: Multiple listing for kidney transplant
Post by: MooseMom on January 11, 2012, 10:51:51 AM
Rileysmom, when I spoke to a coordinator at UWM, she asked me who my neph was, and when I told her, she said that she'd received a lot of referrals from him, so that make me feel good, like they've done all this before.

I'd be really interested to hear about your March 2 evaluation because hopefully I'll be going through the same not too long after that.
Title: Re: Multiple listing for kidney transplant
Post by: cariad on January 11, 2012, 10:35:32 PM
Praise for Madison?! Northwestern coming up short in the comparison?

There is a disturbance in the force....
Title: Re: Multiple listing for kidney transplant
Post by: KraigG on January 12, 2012, 09:00:10 PM
I had my kidney/pancreas transplant at the University of Chicago back in 1990. I think I was only the 5th or 6th they had done at the time. They had been doing kidneys for years, but this was all new to them.
A couple of years after my surgery, the head of the transplant department at U of C left to start up a program at Northwestern. I remember thinking, at the time, why they hadn't had a program prior to that.
Title: Re: Multiple listing for kidney transplant
Post by: justme15 on April 10, 2012, 01:35:03 PM
does anybody have an opinion on Upenn's transplant program? or recommend any transplant centers in Philadelphia?
Title: Re: Multiple listing for kidney transplant
Post by: okarol on February 10, 2013, 05:08:46 PM
 :bump;