Multiple listing for kidney transplant

[MooseMom]

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.

[LarryG]

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?

[MooseMom]

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.

[bette1]

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.

[MooseMom]

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!

[LarryG]

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.

[Cordelia]

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

[MooseMom]

Cordelia, I can only tell you about my experience; I don't know how it will translate into Canadian.

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.

[rileysmom]

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

[KraigG]

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+

[MooseMom]

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.

[rileysmom]

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

[MooseMom]

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.

[cariad]

Praise for Madison?! Northwestern coming up short in the comparison?

There is a disturbance in the force....

[KraigG]

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.

[justme15]

does anybody have an opinion on Upenn's transplant program? or recommend any transplant centers in Philadelphia?

[okarol]