I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: The Noob on September 20, 2011, 03:46:09 AM

Title: Ok, whose cage do i need to rattle?
Post by: The Noob on September 20, 2011, 03:46:09 AM

living donor coordinator has not returned calls to our donor in 3 months. tx nurse says team still has not scheduled a date to look at DH kidney scans. thats the last of it we were told, then set the surgery date. tx nurse says team wants like 6 patients scans to read at a time, not just 1-2. so this is dragging on. eval was june. almost october, all criteria done.
what options do we have to help get this ball rolling?

Title: Re: Ok, whose cage do i need to rattle?
Post by: paris on September 20, 2011, 04:20:33 PM

Keep calling them, leave messages, bug them!!    It all does take time.  No one seems to be in a hurry but us!  My potential donors didn't get past the initial blood draws and crossmatch, so I don't know why they want everyone scans at the same time.  Patience was really the main thing kidney failure has taught me.  I am not a patient person normally.    Keeping you in my thoughts.     :cuddle;

Title: Re: Ok, whose cage do i need to rattle?
Post by: Poppylicious on September 21, 2011, 07:35:22 AM

Quote from: paris on September 20, 2011, 04:20:33 PM

Patience was really the main thing kidney failure has taught me.

I second that!  For months nothing would happen and then all of a sudden everything would happen at once.  Then it would all go quiet for a while again and I'd be thinking we'd been forgotten ...

 ;D

I hope the ball starts rolling again soon.

Title: Re: Ok, whose cage do i need to rattle?
Post by: willowtreewren on September 21, 2011, 11:14:09 AM

One of our potential donors withdrew after not hearing from the transplant center for that long. He had a window of opportunity that closed making it very inconvenient to donate. they dragged their feet with him for 6 months!

 :banghead;

I agree. Keep calling! Be a squeaky wheel.

Aleta

Title: Re: Ok, whose cage do i need to rattle? UPDATE
Post by: The Noob on September 23, 2011, 06:02:06 AM

made the calls again. today tx nurse called me, said they finally read his scans. i had taken him to surgeon tuesday and again asked him to intercede on DH behalf. also the Neph at last week appt.
so, they are now saying they want yet another scan, as they see something they don't like. he has 4-5 of these, all come back "normal cysts"..including this recent one. now they want it done with ivp dye, and one without ivp dye..???
he is allergic to the ivp dye. so now waiting to hear more.

also told her that our donor is losing interest and has a possible job offer out of state. so our window of oppty is closing too. might be that living donor nurse has not returned a call from donor is 3 months?

oh yeah, it is written in large letters across every chart he has, Allergy: IVP DYE

Title: Re: Ok, whose cage do i need to rattle?
Post by: The Noob on September 27, 2011, 04:08:41 PM

ok, so i called tx nurse yesterday. left message to fax DH records to U of M so we can get him dual listed. said their facility was taking too long. she left message today, said head surgeon is now handling it, now wants MRI. as DH can't have ivp dye for yet another ct scan. we should know about that in a couple days. she did sound a tad anxious that we would go elsewhere.
i can almost see us going through the home hemo training, then get the call for the surgery date..LOL..
well at any rate we'll have our eggs in more than one basket.