Do you trust your transplant center?

[inga]

How do you know if your transplant center is calling back people willing to donate? The reason I'm asking is I've had a few potential donors that have not received calls back. Also, would a center automatically deny a living donor if they are altruistic? Is that even legal. I've had a few people contact my center that I don't know (found out my need for kidney via Facebook) and they let me know the center has decided not to pursue testing them because there are other "candidates." Does this sound normal? Thank you in advance for your input.

[SooMK]

Good question. I got all my informtion through my donor. Otherwise I would have no idea what was going on. This never changed. My donor was a college friend (we're now in our 60's) who I kept in touch with but only saw (she was out of state) about once a year. She was given a very hard time during the interviews. The transplant center pretty much discouraged her from donating. She was wonderful. After every communication with the center she would call me and give me an update. I would advise you to create that line of communication with your potential donors. If a donor tells you they haven't been contacted you and he/she should get back to your respective coordinators. My coordinator told me when people were rejected (as both my sister and husband were). It's very stressful and I am not sure a donor who isn't willing to make phone calls and work to save you will actually make it. I wouldn't say I didn't trust the transplant center but I felt they were skeptical of the motivations of my donor. When they finally gave her the thumbs up they further stressed her (and therefore me) by turning it into an emergency, which it wasn't. We had time to work around my donor's schedule but it was like her coordinator didn't have the facts regarding my situation. I wish you the best of luck. I hope this happens for you.

[jeannea]

I have heard that some centers reject candidates who are strangers to you and just saw your Facebook post or whatever. I have no proof of this. They did not give my mother a hard time when she donated but you know...mom. Another possibility is your donor is telling you a white lie to protect your feelings. They might have learned more and said no way not doing this. It's easier to tell you the coordinators suck than to admit they're dropping out. However, if you are pretty sure they're not getting call backs, you should ask. Call the pre-transplant coordinator and ask her calmly why your donors aren't being contacted.

[SooMK]

Good point Jeannea. Somewhere in the information for the donor from the transplant center it says that if you (the potential donor) change your mind for any reason they will work with you to provide a reason for the potential recipient. They do not want anyone to feel pressured into a donation.

[Angiepkd]

I was in the unique situation of having the donor live with me (my hubby), so I saw first hand how difficult they made it.  They would approve us and then order one more test that he didn't pass.  It was excruciating!  I got so fed up that I met with another transplant center.  When they called and asked for my records, I was miraculously approved again.  It was a fight, though.  Had to get labs from our GP and forward them to the transplant team, because they wouldn't do them anymore.  Social Worker was the worst.  He thought he was able to give medical information to us, and he was completely wrong about most of it.  One day prior to the surgery they called and canceled because my bloodwork showed high eusinophils.  We were devastated.  I have had high eusinophils my entire life and they never mentioned it.  Had to go see a blood specialist to be cleared.  Luckily, I had copies of my labs from the past 20 years, so he could see this was my norm.  They rescheduled us the following week.  You definitely have to fight to be a donor!

[Simon Dog]

I'd rather deal with a xplant center that was paranoid about screwing up their success rate than one that will do anything to book surgical fees.   

[inga]

Thank you for your responses. I thought my transplant center was just being difficult with my donors; but I guess it's the norm! I've been thinking about switching centers for a while now. I may have to "test" it out. I've heard from other recipients once they start the process of switching centers miraculously they get approved. So on another topic, does anyone know if there's a law or the legality of transplant centers denying donors because they don't know the recipient?

[Simon Dog]

So on another topic, does anyone know if there's a law or the legality of transplant centers denying donors because they don't know the recipient?

No law, but centers are paranoid about transferring purchased kidneys.  It's not like countries where some asian guy can bring in his long lost cousin Euro-American white guy from America who needs a kidney and have it approved as a "related donor".

I want my transplant center to be difficult with donors, as I would rather have no transplant than a mediocre or poor one.

[jeannea]

There is no law I am aware of that requires them to accept any donor at all. The centers are given a lot of leeway to determine who can be on the list or who can donate or if they will accept a specific cadaver kidney. There are a lot of medical factors and a lot of ethical factors. Most centers have committees that make the final decision on a recipient or donor although people can be rejected long before the committee. Some things are obvious medical issues. A few are psychological issues. A few are really on the edge and you can sometimes persuade them to one side. Then there's the dreaded non-compliance which is important but can be used for evil by bad dialysis centers.

There is no reason though that you can't have a polite conversation with them. Ask how the process works, what they do with living donors. Ask if there is anything you can do to help get things started if you have a living donor. Beyond that, I guess if you don't trust them you have to switch centers.