The list even if you've got a live donor?

[Beth36]

I don't understand.  My mom has to be listed with UNOS even though my sister is going to be her donor.  Is it an insurance thing?  Is it a "just in case a better match comes along" thing?  My mom has high PRA and will need plasmapheresis and a special medication that Mayo says they are getting in February.  She hasn't heard anything else from them, either.  Everything looked good at the evaluation and my sister passed all her stuff....I guess we're being super impatient but we haven't heard anything from them about when they're going to schedule anything.  And now this, she had to send a sample for the list.  If she gets a better match in between, cool but she's starting to get really depressed and thinks they're not telling her something.  I know this isn't the case because if something was wrong, they would tell her up front.  This is beginning to take a huge toll on her and I don't know what else to do.  I read as much as I can and try to talk to her every day to encourage her...I live in VA and they live in MS, so I'm not just down the street but I do call her every day.  My mom's insurance has approved everything and she has been found to be an excellent candidate for a transplant--she's in excellent health except for her bum kidneys.  Mayo told her they'd let her know when her transplant was and they have all my numbers and dh's numbers to call if my mom or sister can't be reached.  I didn't realize it took some time, even though you have a living donor.  Ugh...this process is frustrating.  Sorry for the vent.


Beth

[George Jung]

she has been found to be an excellent candidate for a transplant--she's in excellent health except for her bum kidneys.

Says who?  I had to be listed before anything also, the transplant team has to say that one is qualified as a recipient.  Things can change with donors at any time too so that may also be a reason why.  I am not 100% sure about any of this but it is how I understood it to be. 

Best wishes and good luck.

[sisterdonor]

Beth,

This is normal protocol.  My brother also had to be listed with UNOS even though I was giving him my kidney.  They finished his health evaluation for being accepted for transplant before I began my tests.  From start to finish it only took us 2 1/2 months.

By the way, we did the transplant almost two weeks ago successfully.

[Beth36]

George--Dr. Gloor, the kidney surgeon at Mayo told her she was in excellent health when he was reviewing her records for his decision.  I know how seriously ill she is and I don't try to patronize her.  I'm very supportive and joined this site to find out all I could for her sake.  She's too nervous about everything and won't come here because she just doesn't feel like she can.  Sorry if my saying she was otherwise healthy struck a chord with you.  It wasn't my intent.

Sisterdonor--wow!  Congrats! I hope you and your brother are doing well!!  Good for you for giving him such an awesome gift!


Beth

[sisterdonor]

Beth,

I think George meant by asking who says your Mom is healthy is that the transplant center has to do an evaluation of the Transplantee and not just the donor.  You can't just say you want a transplant and have a donor and they'll just do it for you. The Transplant Cener have to be the ones to offically determine that your Mom is healthy enough for them to accept her into their transplant program.  Past medical records alone won't be enough.  Your Mom will have to go thru all of the evaluation tests like everyone else.  As a Donor your sister will have to have evaluation tests that are quite extensive.  Both your Mom and your sister will have to be approved.  Each of them should have their own transplant or donor coordinator.  Again, it will be from specific tests that the doctors (usually a committee of doctors and ultimately the director of the transplant program) have to review.  It takes time. 

[Beth36]

The surgeon was reviewing her test records during the evaluation when she and my sister had their physical evaluations.  They have both passed all the initial tests you need to do before a transplant/donation.  I guess I didn't word my question/answer well.....sorry.  I just didn't know why my mother would be put on the list after all the testing and meetings with surgeons and coordinators.  I know the process is long but didn't know it was this long.  My mother is concerned about being on the list even though she is having a living donor transplant.  She's very anxious and a little depressed about it.  She thinks they have forgotten about her, I have reassured her they have not.  I guess I should have worded it better...sorry.  I'm just as confused as my mom, I guess.


Beth

[petey]

Beth -- I'd say go ahead and get her on the UNOS list.  If something turns up at the last minute with your sister and she's not able to donate, at least your mom will have time on the list.  It usually does take a couple of months from start to finish to get a live donor approved, lined up, all the paperwork done, etc.  That's a couple of months on your mom's wait time.  Time on the list is important and even one day could make a difference down the road.  Hopefully, your sister will be the donor and the time on the list won't matter.  But, you never know.  Good luck to you all!

[paris]

Beth, I am sorry the process has slowed down.  I had living donors, but was put on the list first before completing the donors testing.  Now, I am glad they did go ahead and list me; because no one was a good enough match---the PRA problem.  They told me it would all go so fast, just a few months and I could be tranplanted.  Now almost 3 years later........
Explain to your Mom that this is just a good back up plan. We know how nervous she is- we don't want to think that we may not get a transplant.   You know you have one of the best transplant surgeons and maybe now that the holidays are over, things will start moving forward.   The whole process is kind of like the army; hurry up and wait.  I'll keep you all in my prayers

[sisterdonor]

Beth,

Don't worry.  Being on the list is a GOOD thing, like Petey says.  It does not mean the transplant center has forgotten about her and your sister for a live donor transplant.  Her nephrologist probably should have explained things to her better.  It's just very normal.  As I said my brother was listed with UNOS even though I was being tested.  It didn't make any difference... I still donated and everything is great.  Had something gone wrong with me being able to do it I felt good knowing he was already building up time on the list just in case.

[KT0930]

I had the same problem as Paris. Due to high PRA, none of the seven people who were tested would have worked as a donor for me. My team's protocol is to put everyone on the list as soon as they're accepted into the transplant program as a recipient. Their goal is to get your mom the kidney that will work the best for her, and if while your sister is being tested, a 6 out of 6 antigen match comes up, then they don't want to miss that opportunity. Personally, I'm glad my team did it the way they did, because it took us 4 months from the time I was accepted until all the donors got to the point in the testing of being declined (always the cross-match). That was 4 months already behind me on the list, and I only waited 11 months total for my transplant.

[Romona]

I thought it was automatic that you are placed on the UNOS list as soon as you are accepted as a candidate. You can refuse any offer of a cadaver kidney.

[KT0930]

Romona, I don't know. Neither of my previous teams ever mentioned it to me before (of course, I don't think there was a UNOS list in 1982).

[Romona]

I don't really know how it all works. I just remember that they told me even though I was testing living donors, I would be put on the list. I was surprised when I was told that.

[Beth36]

Thanks, everybody!  My mom is just really nervous and we're all used to the hustle and bustle of the testing process....it seemed like every other day, we were going to the doctor and Fed Ex to send samples and waiting for phone calls.  My mom was evaluated at 2 hospitals and passed both evals, so I guess it's a waiting game at this point.  Mayo told her they were waiting for some new meds to come in and that they'd know more in February but when my mom got the stuff to be listed, she freaked and thought they weren't telling her something.  We just don't always trust doctors in our family.  I've reassured my mom and all is well for now....thanks again.  And thanks for all the prayers, I pray for all of you as well.


Beth

[George Jung]

I think George meant by asking who says your Mom is healthy is that the transplant center has to do an evaluation of the Transplantee and not just the donor.  You can't just say you want a transplant and have a donor and they'll just do it for you. The Transplant Cener have to be the ones to offically determine that your Mom is healthy enough for them to accept her into their transplant program. 

Thanks Sis, for helping me out with that.  The evaluation process is just what I was talking about. 

Beth, I wish nothing but the best for your mom as I have nothing but compassion for anyone in need of a transplant.  I meant nothing by my post other than what sisterdonor helped me out with.  Please feel free and comfortable to come here and ask any questions you or your mom may have, mostly everyone will answer in a positive light.  One thing I have had to understand and have come to expect is to be patient and prepare myself for realistic (yet hopeful) expectations.  I was always told "don't count your chickens until the eggs hatch" as a child and that holds true for donor evaluations today.  Personally I think it is best not to count on anyone until you both are on the operating table (in this case).

[okarol]

Thanks, everybody!  My mom is just really nervous and we're all used to the hustle and bustle of the testing process....it seemed like every other day, we were going to the doctor and Fed Ex to send samples and waiting for phone calls.  My mom was evaluated at 2 hospitals and passed both evals, so I guess it's a waiting game at this point.  Mayo told her they were waiting for some new meds to come in and that they'd know more in February but when my mom got the stuff to be listed, she freaked and thought they weren't telling her something.  We just don't always trust doctors in our family.  I've reassured my mom and all is well for now....thanks again.  And thanks for all the prayers, I pray for all of you as well.


Beth

Some transplant centers are more efficient than others. If it were me I would be persistent. The team has to schedule the evaluation and the process is slow, but sometimes it can be delayed over the stupidest thing that they forgot about. It pays to call, ask what is still needed, ask who schedules the meetings and appointments, ask exactly how their process works.

[kellyt]

I'm haven't completed my evaluation process yet and my coordinator has already completed all the bloodwork for my 1st living donor.  I was placed on the UNOS list on 12/05/07, but I'm listed as a Status 7.  Meaning, I can't be called for a kidney, but I am accumulating time.       

Good Luck to your Mother, Beth!!!!

[Jill D.]

After I had my first transplant evaluation, in Nov '03, I was accepted into the transplant program right away (this was at a hospital in Grand Rapids, MI) Within two months my sister had her evaluation and was determined to be a match (Jan '04). Since my GFR was 15 at the time and I had not started dialysis (and I still felt pretty good), they decided to wait on the transplant. I was never put on the UNOS list at that time. My transplant was finally scheduled in Aug 2005 (GFR around 10), but two days before surgery discovered my PRA was very high and surgery was cancelled. It was only at that time that I was put on the UNOS list even though I still had people who were willing to be tested. When I went for my evaluation at Mayo in Feb '06, I was also put on the list for that region - even though my sister was evaluated at Mayo and was approved to be my donor for a positive crossmatch transplant.
It must be standard protocol to be put on the list, but I was under the impression that it would be nearly impossible to get a cadaver kidney with a high PRA (although KT0930 is living proof that it is possible!) Mayo will only do postive crossmatch transplants with a living donor because of the plasmapheresis that needs to be done before the transplant.
A call should be made to your mom's coordinator to find out what exactly is going on....seems odd that if both your mom and your sister were evaluated that they wouldn't just proceed instead of holding things up because of the UNOS list. Did she ever get a call from the coordinator telling her she had been approved into their program? The coordinator should be able to shed some light (or get things moving!)
I hope things start moving forward...I have been thinking about your mom a lot lately; thanks for the update!

[Beth36]

Thanks, Jill....I haven't been able to post lately because life is hectic here.  My mom talked to her coordinator and they are all apporved, etc....but the hold up is some new medicine they are waiting to get.  My mom has told me a couple things...one is, they said it would be there in January (but isn't there yet) and another is they've been waiting for 3 years for it.  I have no idea.  Sometimes, my mom will hear one thing and say another and I wish I had been with them/allowed to be with them when they talked to the surgeon.  He did suggest to my mom to wait for them to get this new drug, as it has better results with high PRA patients.  It's FDA approved already, just hasn't been sent to Mayo yet...I don't know.  I'm totally confused because I don't know what this drug is called or who makes it so I can't search it for info.  This has just turned out to be a very stressful process and my mother is getting so depressed.  I just don't know what to do for her at all but just listen and try to encourage her.  When I'm finished with my medical stuff, I am planning on going to visit her...hopefully, my trip will be re-routed to MN!  She's not on dialysis yet but her neph is talking about putting a port in her neck soon, if her function goes down more and she is so upset about that.  It just seems that we have had so many ups and downs with this whole experience, it's now in a dark place until we get the call.  Thanks so much for your thoughts and encouragement!


Beth

[paris]

Beth, I am so sorry things slowed down. This seems to happen a lot, but always for different reasons.  I was so hoping she would be the lucky one who got through all of it quickly. I know how she is feeling.  I am right there beside her. Some days I am so positive and other days find me down. The good thing is she has her donor and tests are all done.  It will happen, but being patient is very hard. I wish we knew the name of the drug--that would give us something to search for.  Keep us updated. I really relate to your Mom's situation.   

[sisterdonor]

Beth,

Try asking about the drug over at www.transplantbuddies.org  There are several posters over there who are very very knowledgeable about  the anti-rejection drugs and one in particular who is on a very new one for which he's enrolled in a clinical trial.  It's probably the same one they want to use for your Mom.

I'm sorry your Mom is getting depressed about waiting.  The waiting is the worst but most who have been thru this have had delays of one sort or another. 

[paris]

Beth, do you know if the drug is for the PRA or anti-rejection?  I know, we are asking you alot of questions!  We care

[paris]

Sorry- double posted!

[Beth36]

No worries about asking so many questions...I am so glad to have a place to talk about this openly with people who are there and who care, so thank you for that    The drug is not an anti-rejection drug from what I understand, it's a drug they use in conjunction with IVIg and plasmapheresis to lower the antibodies before/after transplant in high PRA patients.  I think I am going to tell my mom to ask her nurse what it is called the next time she follows up with Mayo so I can google it....she's too chicken! That is my main frustration, my mom is very upset about it dragging on but she doesn't want to call and follow up because she thinks they're going to tell her she can't do it anymore, they've changed their minds, etc....ugh....I just listen when she needs it and encourage her always.  I live far away from my parents, so it's tough when you just can't go over and visit but I'll go this summer.  Thank you so much for listening and giving advice, I really do appreciate it so so much.  More than any of you could possibly ever know.


Beth

[sisterdonor]

Beth,

They DO like to see 'motivated' participants in transplants.  My donor coordinator told me that by my following up with phone calls for test results and to light a fire under them to get us a date, that it speeded things up.  I do not think it is a good thing for your Mom to just not call and stay on top of the process.  They WANT to see motivation.  I hope you can convince her.  Will she let you speak with the coordinator, perhaps?