Donor testing question

[Jenabcd]

Hi everyone,

My son is starting the testing next week, to see if he can be a donor.  His first day is Monday. He got his information packet and was told to cut his liquids in half this week, and eat lots of protein, carbs, and at least 2 steaks.  Sunday, as of noon, NO LIQUIDS.  Do not brush your teeth, chew gum, have a mint, NO LIQUIDS WHATSOEVER. (That is how they put it.)  No food either, as of midnight, which I understand that part.  Can someone explain though, why all the protein, carbs, and no liquids?  Thanks!

[willowtreewren]

This is interesting. I have never heard of these protocols for testing. I was tested for my husband last year. Lots of protein and heavy exercise will affect the 24 hour urine test negatively. I do know that.

Aleta

[Jenabcd]

Yes, high protein will, and it seems that few liquids for a week, and then NO liquids from noon the day before can also be hard on the kidneys and give a high creatinine count?   I'm SO confused with this.  Obviously they have to know much more than I do, so they must have their reasons, but I sure can't figure it out.

[RichardMEL]

seems odd to me. I can't recall that my sister had any restrictions like that placed on her before her testing... but then again they did it in stages over like six months doing simpler tests first - I guess the idea being twofold - if you get knocked out from a simpler test earlier on then there is no need to go into the "bigger" ones and also over that sort of period of time those who aren't serious might fade out and/or it gives the prospective donor time to consider fully what they are doing.

good luck to your son!!!

[monrein]

It sounds as if they're deliberately trying to stress the kidneys to see how they cope.  However, I would call and ask the coordinator about the thinking behind this and I'd tell them that I'm just a person who always needs to know "why".  That's actually true for me personally but I think that all of us, especially those who must deal ongoingly with chronic illness,  need to develop this kind of medical curiosity.  It helps us to understand our illness better and it also forces our medical professionals to focus their thinking by having to explain it clearly to us.  There will still be confusion, and lots of it, but hopefully there will be just a bit less.

My donor had no such protocols to follow.

[paris]

None of my potential donors were asked to add so much protein or restrict liquids like you posted. I would definately ask the co-ordinator to explain why this is required.  I have worked with three transplant centers and none sent those kind of instructions to those being tested.   I think we are all curious now, so be sure to let us know what they tell you.

[kellyt]

Keep in mind that the goal is not only to find an appropriate donor, but to find an appropriate donor that is truly healthy and will continue to thrive with a single kidney.
My donors were told not to change anything about their normal routine, including diet, before testing.  They were only told they would have to be height/weight/BMI appropriate, but if they were over that weight they could not tell them to lose weight.  Only that a certain weight would be acceptable.  Same thing with smoking.  They were told they could not donate if they smoked, but they couldn't tell the testing donor to stop smoking.

Good Luck.

[okarol]

None of our potential donors were ever given a similar protocol - sounds unusual to me. I agree, call and ask what the idea is behind all the dietary manipulation.

[Jenabcd]

Thanks everyone, for your replies.

I had an appointment with my nephrologist today, so I asked him.  He seemed kinda shocked and said "wow, they're sure trying to stress out his kidneys."  Then he proceeded to say that he hasn't heard of that kind of testing.  My GFR is 5, and I'm on dialysis.  My son really wanted to do this. I said NO in the beginning. I hate to put him through all this, plus I don't know how much of this is genetic, and could he end up with bad kidney(s) too?    The entire transplant team encouraged me to let him though, and convinced me that they won't take one from him, if it's not completely safe.  I wish they'd take a simple blood test first, and make sure his kidneys are healthy, before stressing them out.   I will probably call my coordinator tomorrow, and find out who to ask about this, and let y'all know.   Thanks!

[kellyt]

After his initial psych. interview the very first thing they should test is his blood - before any other testing.  I'd look into changing transplant clinics if you can.

Be strong and don't be afraid to stand up and question them.  Be your own advocate.  And in this case you son's, as well.

 

[Jenabcd]

Hi Kelly,

I'm wondering...  I THINK you had contact with a member here if I remember reading right -- 'kidneyfortracey" ??  I think that was her name, and she had a transplant several months ago.  I believe she had it at Methodist Hospital in Houston, which is who I'm with at the moment.  Do you know if she was happy there, and if her donor had to do that? 

[kellyt]

Oh yeah!  I believe she is very happy with them.   But, I have no idea about her donor testing.  I can find out for you, though.  I talk to her quite a bit on Facebook.  Again, to my knowledge, she was very happy with her team.  Now you got me interested!

Who is your coordinator?  Are ya'll at the same "clinic" or just going through the same hospital?

[Jenabcd]

My coordinator is Stephanie Washington.  I haven't been impressed with her, but otherwise I've liked the rest of the team.  It's just called the Methodist Transplant Center, so I'm not sure if there's a separate clinic.   It's two separate teams... one for the recipient, and one for the donor.  I got the name/number of the donor coordinator from my son tonight, so I will call tomorrow, and ask about my concerns.

[Jenabcd]

Hi again... thought I'd follow up here, since you were all so nice to reply.  I called the Living Donor Transplant Coordinator, and voiced my concerns.  She started out by saying that they made sure his kidneys were ok, at his original screening.  I said "he hasn't been there yet."  (He lives close to 4 hours away from the center... yes, he is doing this for me, plus he lost 30 pounds too!!!)  Anyway, she said "hold on a moment".    I don't know what she did or who she talked to, but she came back and only said that "it's a new system, and we are the only ones who use/do the UMAX testing.  I'm sure he'll be uncomfortable, not drinking anything the day before, but it won't hurt him."  I kindly told her that I do know that it can be harmful and stressful on the kidneys, especially if there is anything slightly wrong with them, to not drink anything for so long, and to eat all that protein.  She said that when they originally talked to him, he didn't indicate that anything was wrong.  (hmmm)  I am continuing to try to be as nice as possible, but I responded that he hasn't actually been tested yet, and I do know that kidneys can be horrible, before knowing a thing. Anyway, she stuck to her story  and repeated that it's a new system, and it's how it works, and all will be fine.   Uh boy. 

[okarol]

Then she won't mind giving your brother a copy of the new system in writing, so he can learn more about it before he goes?

[kidney4traci]

Hi there!  I heard about your problem from Kelly.  I too went through Methodist, however did have a different coordinator, as did my donor.  I do remember a stress test where she had to increase protein and maybe had to watch fluids after midnight, not all day (that I remember).  I was to see how the kidneys react under stress.  It wasn't too hard on her.  I have had a great team, maybe if you are concered about her, maybe call Minerva at the front desk and see if there is someone else to talk to.  My coordinator was Priscilla, but I can't remember Ryan's coordinators name at the moment.  I will ask her.  Feel free to pm me, as I am on my blackberry more than my pc nowadays and can't seem to get on IHD with my blackberry anymore.  I am here to help if needed...  and miss you all!!

[kellyt]

Thanks Traci!   

[Jenabcd]

Yes... thank you so much Traci!!  I hope that you receive my pm.  I'm not sure if I did it right.  Kelly, thank you also -- very much, for contacting Traci! I appreciate that too.    My son is coming tonight, for the weekend, so we'll be able to  talk about it.  Thanks all!!

[kidney4traci]

OK, after reading this threae through, I have a few things to add to my previous posting.  First, my donor was also not in the Houston area, she lives in Michigan.  What they first did was to have her complete a questionaire.  Then they did send her a blood kit, testing her antibodies and blood type.  Once they found that was compatible and that she was a "match" they wouldn't even tell me before they advised her.  This gave her the opportunity to decline before notifying me.  As she agreed to proceed, she had to come her for two days of testing everything.  Similar to what we as recipiants go through to even get listed.  It was during the end of these tests that they did the stress test on her kidneys.  Once they cleared her, they then set a date for the transplant.  In our case,m we had to wait from November to February 3 due to a few different factors.  We both had different coordinators and surgeons, everything.  It protects the donor, they say.  I do remember that she had problems at first getting things set up.  She ended up calling my coordinator (Jennifer in the beginning) and she got the ball rolling after I called and bugged her too.  You do need to be proactive.  Call Priscilla or Jennifer, they are both very good at what they do.  I have seen the center getting busier, so they are inundated.  They could tell you YOU are listed, but then you also get notified by UNOS officially listing you.  They can't say he is a match yet without doing all the testing, so there is something missing.

[kellyt]

Other than the out-of-town donor, my experience was very similar (I'm in San Antonio).  Please know that even though he is your son, he is their patient first (in their eyes) and they will not share his information with you.  You must get that information from him directly.  They wouldn't even share the testing information on my husband with me when he was testing.  Actually, I was at the hospital with him visiting and when the doctor came in to talk to him he asked me to wait in the hall.  Doctor/Patient confidentiality applies!

I wish you nothing but the best!  Good luck!