Time to Consider Other Centers?

[Restorer]

I just heard from my second donor. UCLA rejected her for being "too young" and her family history not being optimal. They told her to apply again in five years. 

Since I refuse to wait 10+ years for a deceased donor kidney in this area, I think it's time to look into listing at other centers. I have some material to read about that, but right now I'm wondering about Cedars. What's different about getting evaluated at another center in the same region, for the purpose of getting living donors approved?

Is this "too young" thing common? I know 18 is the standard minimum, but it seems UCLA has a soft limit of 25.

[edersham]

I dont know if Mayo in Phoenix is an option for you but they treat you really well (I had a great experience there) and they have a published average wait time of 19 months for a decesed donor kidney.

Ed

[Restorer]

Yep, that's definitely on the list. I have family near Phoenix.

The average wait time UCLA gave me for Phoenix was closer to two years - can't remember if it was 23 or 25 months. I'm also looking at La Jolla, and maybe the Sacramento area is a possibility too.

[cariad]

Oh, Restorer, I have just thrown quite a few swear words into the ether on your behalf.

Crikey! (There, that's a relatively clean one for you.)

Do they expect her family history to change in five years? This story is only serving to reinforce my unflattering view of UCLA. How keen is your potential donor? If she has the attitude of "I am going to find a centre willing to do this, like it or not" then they may just see that she has the maturity and determination to see it through.

I liked Cedars. They have this fixation on the sensitised because that is their speciality. My coordinator sounded rather gutted that my PRA was zero, and that was a tad disturbing, but beyond that, the process was painless. The doctors (and this is going back to 2008) were extremely mellow and seemed to enjoy the chance to speak with patients who bothered to learn about this, so I would rate that as one of my better evals. I would suggest making your appointment and mentioning that you have the live donor, but do *not* mention the specifics unless asked. Mention that you have had certain tests done already - they won't have to pay for these, and that will be attractive. There was no charge to the patient for evals at Cedars, which is why I suspect that if you get in the door, they will be reluctant to reject you on such dubious grounds. Cedars was ticked off at us (Gwyn and I) because we went through the whole eval, were approved, and then we left and apparently they do not get paid if they do not perform the operation. I ditched USC for Cedars, and the surgeon had done his med schooling at USC, so he said in a mock-accusatory fashion "So, what's wrong with USC?" (How long do you have...?) Then he said "You don't have to answer that" and it never came up again.

The social worker was a serious fellow, he runs their on-line support group. My donor does not even remember seeing a social worker. The wait will be the same as UCLA for cadaver organs. I think going out of state or to the San Diego/Sacramento area are good ideas if you want to reduce your cadaver wait, if it comes to that. Not sure this actually answered your question, but if you want more specific info, I will try to remember. Good luck!

[Desert Dancer]

Hi, Restorer -

That's the first time I've heard of "too young". I wonder if it's just that center being extra cautious?

I live in Phoenix and I'll be doing my transplant evaluation at Mayo in Scottsdale. I used to see a nephrologist there and I just loved the place; I definitely had a sense of being in wonderfully competent hands.  If you have family here it would probably be well worth looking into.

[okarol]

I just heard from my second donor. UCLA rejected her for being "too young" and her family history not being optimal. They told her to apply again in five years. 

Since I refuse to wait 10+ years for a deceased donor kidney in this area, I think it's time to look into listing at other centers. I have some material to read about that, but right now I'm wondering about Cedars. What's different about getting evaluated at another center in the same region, for the purpose of getting living donors approved?

Is this "too young" thing common? I know 18 is the standard minimum, but it seems UCLA has a soft limit of 25.

When Jenna was 19 her cousin (also 19) called USC to begin the evaluation process to be her donor and after a few calls was told that they "were reluctant" to have a living donor under 21. All their literature said 18 years old as a minimum, but they said they rarely accepted anyone so young.

I cannot say enough good things about Scripps Green Hospital in La Jolla. Amy Knight is the BEST transplant coordinator ever! Dr.'s Marsh and Schaeffer are wonderful too. After being at UCLA and USC, Jenna multi-listed at Scripps Green (you can do the application online go here and scroll to the bottom http://www.scripps.org/services/organ-and-cell-transplantation/medical-services__kidney-transplant-program ) and she liked them so much she had them do her living donor work-ups. They were great to her donors too (one was found to have her own kidney disease, and the other gave a kidney to Jenna.)

[RichardMEL]

re being too young there are several reasons that I've noticed. First of all, if the prospective donor is female there is an issue (for them) with donating while still in child bearing years. For example when my sister tested she was 39, and one of the issues they had was that technically she could still have a child, and even though she said she doesn't want one, they were making the comment that child birth after kidney removal could be problamtical for her. In the end that isn't why she was rejected, but I have a feeling it helped shape the overall decision in the end. As for the family history thing - it could be something as much as a history of hypertension in the family that had not manifested in the donor at that age - but may do so down the track - that's a big no go sign for most transplant evaluation comittees it seems.

Remember the goal si to do no harm to the prospective donor as well as recipient, so if anything little crops up they likely will err on the side of caution....

Sorry to hear that your donor was rejected - it's very difficult to hear I know.

[Restorer]

Do they expect her family history to change in five years? This story is only serving to reinforce my unflattering view of UCLA. How keen is your potential donor? If she has the attitude of "I am going to find a centre willing to do this, like it or not" then they may just see that she has the maturity and determination to see it through.

Maybe their reasoning is that, at 25, certain potential problems will be more obvious or easier to detect, and her medical history will be a better indicator of her future health? I'm not really sure. She says she's nervous, but committed (to going through with it). As far as multiple centers go, she's pretty much following my lead, I guess.

I haven't liked UCLA much. The evaluation itself was helpful and relatively pleasant, but they're terrible with communication, and apparently they care more about their statistics than about their patients. I say that knowing that they want to protect potential donors by rejecting them if there's a possible problem, but it seems like they didn't even give them the chance.

I cannot say enough good things about Scripps Green Hospital in La Jolla. Amy Knight is the BEST transplant coordinator ever! Dr.'s Marsh and Schaeffer are wonderful too. After being at UCLA and USC, Jenna multi-listed at Scripps Green (you can do the application online go here and scroll to the bottom http://www.scripps.org/services/organ-and-cell-transplantation/medical-services__kidney-transplant-program ) and she liked them so much she had them do her living donor work-ups. They were great to her donors too (one was found to have her own kidney disease, and the other gave a kidney to Jenna.)

Wow, that's a... comprehensive application form! I don't expect it will save me from answering all those questions in person again though. The thing I hate about forms like that is the inflexibility. I always want to answer everything conditionally. "Have you ever had muscle or joint pain?" "Yes, but only when my phosphorus was super-high before I was on dialysis because my nephrologist in Santa Barbara was an idiot." 

The social worker was a serious fellow, he runs their on-line support group. My donor does not even remember seeing a social worker. The wait will be the same as UCLA for cadaver organs. I think going out of state or to the San Diego/Sacramento area are good ideas if you want to reduce your cadaver wait, if it comes to that. Not sure this actually answered your question, but if you want more specific info, I will try to remember. Good luck!

I'm tempted to go out of my area first, to get another chance at getting my donors evaluated, and get on a much shorter cadaver kidney list at the same time. But if I can get a donor approved in my area, it would be much more convenient and comfortable to recover at home. That's why I'm thinking about Cedars.

Uhh, heh, I'm not sure if you answered my question either. I don't know if the process for applying at Cedars will be any different if I'm already listed through UCLA. Do I go through the normal application/appointment process, and then mention at some point, "Oh, by the way, I'm already on the SoCal list through UCLA."? Will they be able to transfer test results from UCLA if I tell them right away?

Man, this is complicated.   

[okarol]

The advantage to USC and UCLA is if you have a non-matching but willing donor, they are both involved with the National Kidney Registry, which has facilitated chains of transplants for patients who had no options before.
The advantage at Cedars is if you have a high PRA they will treat your blood to help you accept  donor. Do you know what your antibody level is?
Good luck!

[Restorer]

I don't know my PRA, but I've only ever had two transfusions of supposedly "clean" blood. Can PRA be naturally high, or do the the antibodies only develop with exposure to transplants and transfusions?

Forgot to add:
I assume a donor exchange/chain (UCLA) would have a lower chance of rejection and a better long-term graft survival rate than an ABO incompatible or crossmatch positive transplant (Cedars), but it appears I would have options at either center. It's all about not having a donor summarily rejected before match testing is even done.

[cariad]

There might be some rare cases where you have antibodies without having any of the big risk factors, but no, if you are a male with no previous transplants and leuko reduced blood, you should be fine.

The eval will be pretty much the same, but you will not need to redo any tests except the blood test, unless they come up with new ones. At Cedars I met the coordinator, nephrologist, surgeon, nutritionist and social worker. The only thing I would worry about is that if you tell them that UCLA rejected your donor, they may reject her out of hand because some doctors think that if she's not good enough for their program, she's not good enough for ours. Or they may be the type to pride themselves on thinking independently. I never had an eval at UCLA because I got such an off feeling from them, that they were rigid and demanding. This is a transplant - you'll be seeing quite a bit of each other, and you want to be treated as an individual.

I have had five evals, and you will always have to go through the receiving line of staff, but you can certainly bring any recent records. I would transfer your UCLA records and mention that you are already approved and want to transfer time. Just do not mention the donor issue until you are there - I strongly believe that you are far better off pleading your case in person, but perhaps I overthink these things.

If your instinct says to go out of area, then you should probably just start there. Evals are draining. I would not want to go through 3 in one year.

[tinyspiko]

I just finished my work-up at a second transplant center. I have already been listed at first center for 1 year. The key to multiple listing is three-fold. Make sure the other center is in a different OPO, two - make sure your insurance allows it (most centers check this for you) and three make sure the center you are interested in accepts multiple listings. You can see which center are in what OPO on the ustransplant.org website, along with each centers stats. Listing in the same OPO is a waste of time because each OPO shares one pool of organs. If the organ can't be placed in that OPO, it is then placed for regional and then goes national. So, the more OPO's you are listed with, the larger the pool of organs that are available to you. Pick the center you like the most and transfer your time to that center. Then you accrue time with the other centers as of the day you list with them. If my second center picks me, I may transfer my time there. Hope that helps. I used to live in your area, in Florida now, but I am sure CA had a lot of OPO's. Don't leave out Nor Cal

[okarol]

I don't know my PRA, but I've only ever had two transfusions of supposedly "clean" blood. Can PRA be naturally high, or do the the antibodies only develop with exposure to transplants and transfusions?

Forgot to add:
I assume a donor exchange/chain (UCLA) would have a lower chance of rejection and a better long-term graft survival rate than an ABO incompatible or crossmatch positive transplant (Cedars), but it appears I would have options at either center. It's all about not having a donor summarily rejected before match testing is even done.

If your PRA is not an issue then working toward a straight donation or swap would probably get you a better match. You're young, and as Jenna's nephrologist said, if she were older and had less options he would go with ABO incompatible treatments, but they really don't know longterm how they'll do, so keep it as simple as possible.

tinyspiko is right about the multi-listing, it gives you more options and you can ultimately choose where you want to transfer your waittime. I would caution about No. California. Jenna was listed in the Oakland/SF area OPO but it turned out the waittime is the same at LA area so it didn't help if you're needing a deceased donor kidney.

[Restorer]

If I do Northern California, it'll be in the Sacramento area. I haven't been able to find a list of which centers are in which OPO, but the SRTR site lists median wait time at UC Davis as 47 months. Then again, it lists wait time at Cedars Sinai as 30 months, so I don't know what's going on.

Wait time transfer... I assume that wouldn't cover the extra time since I started dialysis that I get with this So Cal program? If it did, I could transfer to Arizona and get a kidney tomorrow! 

[paris]

I was listed at three centers.  After going through the orginal evaluations and testing, I simply contacted another center and a one day trip to meet the team there gave them all the info they needed plus a face to face meeting and I was listed. My yearly testing results were faxed to the other centers.  With Johns Hopkins, everything was done over the phone.  I found it really easy to get multiple listed.    It increases your chances so much.  I hope this works for you.  You are doing a great job at being proactive in this transplant journey.