Frustrated with transplant team!?!?

[Angiepkd]

Went for my monthly neph appointment Wednesday and had some questions/complaints about my transplant team.  I still have not received confirmation that I am added to the UNOS list, and I finished my testing in August.  More importantly, the social worker talked my last potential donor out of proceeding.  She was told that she would be unable to get health insurance and life insurance after donating because she is self employed and buys her own policy.  She was also told that she would be unable to work for 6 weeks after surgery.  My doctor called my coordinator, and she called me later that day.  She said they would take care of the social worker problem immediately.  As for the list, they don't add people until they are out of potential live donors.  This seems ridiculous to me.  I am being punished because a have several people willing to be tested?  Every one of them, so far, have been rejected, or convinced to drop out.  Makes me so mad I can't see straight!  Anyone have a similar experience?  It's enough to make me want to give up.   

[KatieV]

That is not how it worked with me.  I was listed on the Unos list even though we were planning to go for a living donor chain.  I would push to get yourself added to the list immediately.  It seems ridiculous!

As for the social worker - does she NOT want living donors??? She needs an attitude adjustment pronto!

[cattlekid]

From my experience, that is complete garbage.  I started my listing process with Northwestern University in Chicago and ultimately moved to University of Wisconsin.

As far as Northwestern went, I started with an informational meeting and a meeting with the transplant team at which time they gave me the list of tests.  During the informational meeting, they provided all of the necessary packets to give out to living donors.  The living donor process was completely separate from the listing process.  I had living donors completing their initial tests concurrent to me finishing my personal testing.  I was on the UNOS list long before I ran out of living donors.

Someone really seems to have the situation backwards at that center.  Any chance that you can switch centers?  If this place has things so backwards now, I hate to see what would happen down the road.

[jeannea]

I would be frustrated too. The only thing I see true from your social worker is your donor can't work for 6 weeks after the surgery. Although being self employed, if her job is not very physical maybe she can go back sooner. She would need to discuss it with the doctor.

You said the coordinator would take care of things. Can you find out if she did? Call her and discuss why you're not on the list yet and what can be done. If she is able to help you then you're good. If she treats you badly then you need to look elsewhere.

[noahvale]

^

[coravh]

I was on the list for quite a while before my cousin was cleared to donate. For a variety of medical issues, it took longer than usual to get her tests done. I've never heard of this sort of policy  before. I wouldn't just stick with the coordinator. I would talk to the head of transplant.

[Joe]

I just had a live donor transplant, but I've been on the list for two years. I think someone is blowing sunshine up your afterburner.

[Angiepkd]

Thanks, everyone!  I am going to push the issue further up the chain of command at my center.  I am not sure about dropping them and listing somewhere else.  The only other place close to me is awful.  I had to have my double nephrectomy there and they tried to kill me lol.  Definitely prefer the hospital where I am currently listed.  The problem is with the transplant staff.  I have already rocked the boat a little by reporting the social worker.  I am afraid to stir things up much more or they may keep finding issues with my donors.  I know that shouldn't happen, but I am leary of pushing my luck.  My husband is about to ask to be reconsidered after losing 30 pounds and getting his fasting blood sugar in range.  Don't want to jinx it.  Thanks again!