what about changing transplant hospitals?

[The Noob]

its been 5 months since the long day eval at Univ Toledo Transplant clinic. Months since criteria completed, living donor young and healthy and cleared. 58 yr old recipient in good health and now on Nxstage.

every few weeks, we get call they want something else. now they say they want the actual films from kidney scan a few months ago. thought thats what they had. so when they say this, we move and get them what they want, then 3 weeks later we get some answer, and they say they want something else?

reason we picked this hospital is its closest to us, and living donor 1 mile from hospital. this is Univ of Toledo. next closest would be U of Michigan. but much longer drive for everyone.

we're heading to UT this morning for cath replacement and eval on fistula to see if its needs fistulagram. thinking of going to admin while there and asking about all this.
any ideas anyone?

ps: one young man at D clinic going through same. living donor nurse takes 3 months to return calls to donor, etc., other man going through same, 1.5 yrs to be cleared, healthy, still waiting to set up.

[ToddB0130]

I am very confused by this.  It seems that "all systems are a go" ..... why would they be delaying this for you (and the other folks you know) ?? Dialysis is so expensive (not that a transplant isn't,  I'm sure),  but really .... this seems ridiculous.    Don't they realize that any little thing can change over time to impact this ?   And isn't it their JOB to proceed and get this done ?  Sounds like a nightmare and I'm sorry to hear you are going through it.  There's red tape and then there's UGH.   I hope to hear from others about why you (or others) might be going through this.   This is for a living donor situation no less !  Odd.   Definitely talk to someone in charge.  I wouldn't leave the hospital today without a date (HA !!).  Good luck.

[The Noob]

hey todd, well i went upstairs to clinic while dh in surgery and gave em the bid-ness. got the admin number. asked them how many they got waiting and cleared with a living donor? and how many of the staff are on dialysis and waiting for a transplant? well, seems head tx doc has been in spain on vacation. must be nice, both my socks have holes and my son thinks a family outing is to the doctors office. i'm calling tomorrow.

[okarol]

Not all transplant hospitals are created equal. We experienced the same inconsistent, random and seemingly cavalier approach to completing the evaluation process. It took more than one complaint to get it done. So now Jenna is listed, but I have no faith in the center (nor does she) so we are in the process of multiple-listing at another hospital, where she would go for a transplant.

[willowtreewren]

Our transplant center was/is very compassionate. The only complaint we had was with the SW who gave us some incorrect info at the beginning of the process that set us back about 8 months! 

But the receptionist is a kidney recipient herself and I think that helps set the tone. 

We did discuss changing centers when my 24 hour urine test fell slightly below their cut-off (but above the cut-off at another center). They contacted me and allowed me to come in for a nuclear kidney function test to clarify my function. Bummer, still failed, but felt better knowing the exact results. After all, I wanted Carl to have a GOOD kidney, and not one of my bum ones. 

If you are being treated poorly, let them KNOW that you are seriously considering going elsewhere. That might improve their performance. Ka-ching!

Aleta