update

[The Noob]

daughter and her fiance were tested as possible donors last week. they are both matches for blood types. they will find out about cross match tomorrow. 10 days for rest of testing.

the living donor nurse says we are to not communicate with them about any of this. she will get results and do so with them. then they have to tell us.
ok i understand the ethics and privacy. but she made it sound like we were asking them to donate a leg.

they are both excited and came forward on their own, we never asked. it was actually a surprise. they had wanted to be tested for months but didn't know what/where. its taken a long time to get to this point of actually doing the eval. its a whole ballgame of learning for us.

this hospital does not do the single incision so may check out different one that does. this i would hope would be best for donors? they use the belly button and there is no scar.

colonoscopy is set for next monday. cardiac clearance tomorrow. then dental.

NO we don't want to ask someone to donate an organ. YES we are mostly concerned for donors health.
but, they came forward on their own. i have schooled them for hours on all the hard facts, given them websites, to read, they went to eval with us and did the paperwork and interviews thus far.
not sure what our role is here. feedback?

[MooseMom]

I agree with the living donor nurse.  Your daughter and her fiance are smart and compassionate people, and if they have questions or concerns, trust them to contact the nurse for answers.  You are well educated about kidney disease but not about living donation; it is not your responsibility to do anything but to reassure the two of them that if at any time they feel they want to back out, you will support their decision and will still love them for their wonderful offer.

Let the living donor nurse do her job.  Trust your daughter and her fiance.  Tend to your husband just as you always have.  Everything will work out.

[The Noob]

thats what i told them. that we are to stay out of it, they contact nurse. always keep telling them both exactly what you said. just i am a little sticky about it all as its family, not unknown donor. don't want them to feel i am abandoning them when they have questions. i told them its a question of ethics, privacy, and never putting them in a position they feel obligated at any point. even up to the moment they are going into the OR they can back out. but at the same time don't want to scare them, but rather inform them. want them to make choices out of rationale, not emotion. hard to separate it for them.
i've been the mover/shaker in all this for 18 months so everyone still expects that.

[okarol]

The transplant centers want to be sure that there's no pressure, coercion or influence on potential donors. They want to deal directly with the donors so they can ascertain their level of commitment to following through. It's pretty standard and I wouldn't worry about it.
Jenna's donor had 2 tiny laproscopic holes for the camera, scalpel and retrieval bag. The 4 inch incision, where the kidney came out, was on her cesarean scar so she was fine with that.
Your hubby is fortunate to have some folks willing to donate. Isn't that great!!?? And it sounds like you're being responsible in helping them to have full informed consent. I hope the crossmatch comes back negative and one of them will be approved.

Good luck!! 

[MooseMom]

More than it being a question of ethics and privacy, it's also a matter of accurate information.  There's plenty of information on kidney donation on the internet, but if your daughter and her fiance have questions about the protocol followed by the specific transplant center, the living donor nurse should be the one answering questions.  Wouldn't you feel awful if you inadvertently gave them incorrect info?  I am sure you've read the many posts from IHD members who are going through pre-transplant evaluations, and it seems that every transplant center has a slightly different protocol. 

I'm sure they would never feel "abandoned".  I do understand that when it has been you who has sort of tied everything together for everyone, it's not easy to hand over the reigns to someone else.  But there are so many things that you just HAVE to do for you and your husband; you have no choice.  This isn't one of those things, so let it go and let it be handled by the pros.  You would do everyone a favor if you could find it in yourself to delegate this particular task to someone more appropriate, ie the living donor nurse.

Of course you want them to make choices out of rationale, but if that rationale is accompanied by emotions like love, that's not a bad thing, is it?  If it is found that they cannot donate, the transplant center won't let them.  They will be protected.

[The Noob]

well i had to laugh a little at this. doing everyone a favor? thats been my life for 18 months. doing it ALL.
everyone yelling at me to get it all done. yesterday took him to see endo for colonoscopy, doc ignores me completely whole time. gives him lists, so on, which of course then get handed to me.

but i see your point, and your correct.

now, there is another hospital about 2 hours away that does single incision. they are both young and no c-sections or other scars. 4 inch incision is alot to ask. i figure we can finish his criteria and get him cleared, then make some calls to other places on this.

as to accurate info, they both said i gave them more than the hospital did. i was blunt and brutal on the facts.

[okarol]

We met Jenna's donor online - I am admin there too - www.livingdonorsonline.org - there's tons of info. And they have a message forum like IHD for questions.

[The Noob]

i registered him on there when he first got sick. never got reply except one from admin correcting something on his blood type.

as much as he'd like a transplant, in no way possible would either of us ever want to endanger anyones health to our benefit.

its been hard you know. its his health issue, but he counts on me to do it all. i have stepped back now that he is able to do more. but its been a long 18 months. everyone is asking me/expecting me to keep doing so, but i remind them as far as the donors go, we can't be in the middle of that. we just do our part.
 

[okarol]

When I joined LDO I thought I would be Jenna's donor, but was not a match. So I posted in the "looking for" section, and each week I would add a photo or a little update on Jenna, so her thread would get bumped up. And I had a link they could follow to a webpage that told her whole story. I think this is why she got so many responses (plus the fact that she was 19 years old - more people seem willing to help young people.)
Jenna's sister has mentioned donating when the time comes. She's 21 now (since last week) and certainly is mature enough to make the decision. My only concern is the issue of having children later. She says she doesn't even want kids, but someday she might change her mind. Many donors have warned us that she would be considered high risk with any pregnancy, which is something to think about.
I admire your advocacy for your husband, I would do the same thing. It's tough to do it all, but worth it. He is lucky to have you!

[The Noob]

thank you hon. i made him a caring bridge site and blog we had for a long time. but his family kept putting nasty notes up, so we both decided to delete them. the donor nurse asked me if any family had asked about donating. i told her yes, some had, one being his brother who would have been his best match (said donor nurse), but his parents went around to all the family and told them not to donate, for him to wait on cadaver. then called to tell him they had done this.

i would donate in a skinny minute but i am a diabetic, so out. how do you advocate but then stay out of it if they choose to be tested? i haven't really done that all except for asking a long time friend once if they'd be tested. never heard from them again.

the rough part of this is that my husband is not my child. he is not a helpless infant. but he's been through so much i have had to take the reins up to this point. now he is feeling better, i push him to take on a little more as time goes on. its awful hard from going to being a wife to being a nurse and full time hired hand. i said to my sister awhile back that i no longer have a husband, i have a patient.
very sad.

i will keep doing what i can as i am a staunch believer in the golden rule. thats all i know to do.

[The Noob]

hey, i need to tell yall this story! my mom has been an RN for over 30 years. she has traveled, done home construction (heavy), car repairs, worked other hard jobs, had 5 children, always in good health.
well, she is 68 now, and recently had a couple MI's, had to have stents put in. she was back to work in 2 weeks as hospice nurse. (she loves fast food and doesn't eat right) she also had a bout of CA some years ago but literally sailed through it. she is a wonder!!!

get this, when she was in hospital few months ago going through all this, it was found that she only has one kidney. has always had only one kidney.

tx surgeon at eval i drilled him about long term effects of donating from from my daughters health perspective. pregnancy and all, he said none. but of course no one can predict the future.

just thought i'd share that.