Tansplant center, is this a common frustration?

[onestronglittlelady]

My husband had a friend who wanted to donate a kidney. He started the process in January. They told my husband the donor is cleared and some time this June they will take the case in front of the board. Now I think the donor has backed out. He expected this to be done before summer started. Does it always take this long? I am frustrated as my employer health insurance runs out next week, then we will just have the medicare.

[cattlekid]

I am finding the same thing.  I have four live donors who have turned in their paperwork to my center and only one (my mom) has really started any testing.  Two others haven't even heard from the center yet other than to ascertain that their paperwork has been received. 

This is why I am going to switch centers to University of Wisconsin.  They state that they can work up a live donor in 6-8 weeks.  Northwestern is just too big and slow for me.  It just doesn't make sense that they aren't moving along quickly when I have passed all my tests and have donors eager to move along with the process. 

[BillSharp]

Cedars-Sinai in Los Angeles, where I am listed, says it takes 4 to 6 months to move from initial contact by a perspective donor to actual transplant. It sure would be nice if they could get that down to 6 to 8 weeks like the U of Wisconsin, but in Cedars defense, they are extremely busy. Plus, in my case they have to put me through two processes, one to lower my antibodies, and two to make me accept a blood type different than mine.

[cattlekid]

Well, the universe must have heard my frustration....my mom just called and let me know that Northwestern called her today to let her know that we have compatible blood types (both A positive).  Next step for Mom is a chest xray, EKG, 24 hour urine and more bloodwork.  She can do all those tests in PA where she is.  It is looking more positive (no pun intended) now.  She is very healthy otherwise so we don't expect anything shocking to come out of this round of testing.

[Chris]

Well, the universe must have heard my frustration....my mom just called and let me know that Northwestern called her today to let her know that we have compatible blood types (both A positive).  Next step for Mom is a chest xray, EKG, 24 hour urine and more bloodwork.  She can do all those tests in PA where she is.  It is looking more positive (no pun intended) now.  She is very healthy otherwise so we don't expect anything shocking to come out of this round of testing.

That's good news cattlekid.
 
I would have thought it would not take that long for a live donor. However, if insurance was an issue and you knew it ends in such a such date, bring that to attention to them, but also have a plan to cover prescription cost and follow up care o make them happy to accept you and get the process rolling asap. Plus they should in my opinion be more accomodating to someone who wants to donate and have their summer free, especially when they got the ball rolling months ago.
 
Hopefully onestronglittlelady you will find additional insurance and that you donor still wants to participate after the summer.
 
Another thought, the transplant center should have educated the donor more about the process and how long it takes so they can decide right then and there if they want to keep persuing the matter and not get frustrated later and change their mind.

[WishIKnew]

It took over a year and a lot of miscommunication and frustration for my transplant center - University Hospital in Cleveland,  Ohio- to process and clear my friend for a transplant to me.  By that time she had apparently lost faith in UH or something because she was never heard from again.....

[Chris]

Geez, seems like the transplant centers need to get their heads out of the ground! There could be so many more transplants if they didn't putz around or keep people in the loop of things. Miscommunication seems to be the norm with transplant centers, this is the norm with my transplant center post tx care.

[cattlekid]

Prior to my conversation with my mom today, I had left a message for my tx coordinator regarding the fact that I hadn't got a confirmation letter yet even though I have been listed for transplant since May 12th.  She just called back and stated that I am not "officially" listed because I have live donors but that I will get a letter anyhow in a couple of weeks.  Also, she stated that only one live donor is tested at a time - which explains why my other live donors haven't heard anything.  Would have been nice to know all of this at the get-go! 

I think the big transplant centers are just so busy that they don't think to tell us everything unless we drag it out of them!

Geez, seems like the transplant centers need to get their heads out of the ground! There could be so many more transplants if they didn't putz around or keep people in the loop of things. Miscommunication seems to be the norm with transplant centers, this is the norm with my transplant center post tx care.

[Chris]

I still do not get the test one donor at a time thing, but do not know how or who is billed. To me it would speed up the process so if noone is a match, one could try to find another group of people, gain time on list, or find another means of getting a donor such as Facebook, Craigslist, or the one Okarol used that I can't think of at this momment) Just doesn't seem efficient the way they do things.

[Jie]

Lisiting and livign donor should not be related. Listing is for cumulating waiting times and should occur as soon as possible. At least, the center should list patients as inactive while evaluaitng living donors.

[Sax-O-Trix]

It took 14 months from my first visit with the transplant team until my preemptive transplant took place (very frustrating at times for various reasons).  I had two matching donors and the tx center would only let one at a time go through the full testing process.  I was approved and actively listed with UNOS 6 months into the process just in case my donors didn't work out. 

[rsudock]

It took over a year and a lot of miscommunication and frustration for my transplant center - University Hospital and Cleveland,  Ohio- to process and clear my friend for transplant to me.  By that time she had apparently lost faith in UH or something because she was never heard from again.....

Totally agree with you Diane. Next month will be a year since I started dialysis...it has taken UH a bit to get it together.  I told my living donor that you have to stay on top of UH otherwise you fall through the cracks!


xo,
R

[sparklelady]

I don't understand only testing one live donor at a time. Both my husband and my brother were testing at the same time. In fct, they turned it into a "pissing contest"!! ( pardon the pun)
They golf together every weekend, so it was a double competition!!

[Cordelia]

I fell through the cracks, I am delayed in my transplant testing by at least 2 months because of an error in the system.       

I got an apology from the co-ordinator and I was told that it rarely happens, the time it happened before ME was 4 years before. Of course, it had to be my name that fell through the cracks. Veeeeeeery frustrating and maddening!   

[Chris]

Cordelia, is this the same center that goofed up previously too?
That is unexceptable and they should be more than willing to compensate you for their screw up and get the ball rolling faster. Guess they don't care if people spread bad words about their center.
 
I have also gone through a major screw up. I was accidentally taken off the list because someone with the same name had gotten a transplant and took the wrong person (ME!) off the list instead of the correct person. Once I got that call though, less than two weeks later I got my transplant.

[Cordelia]

No, Chris, fortunately, it's not the same center   

I'm so sorry to hear about your experience too, that is so upsetting what you went through!!

[Jie]

I don't understand only testing one live donor at a time. Both my husband and my brother were testing at the same time. In fct, they turned it into a "pissing contest"!! ( pardon the pun)
They golf together every weekend, so it was a double competition!!

One at a time would save money and staff time as well. If one is approved, then there is no need to test another one. Of course, this approach will take longer for patients.

[kellyt]

"The committee" where I am only met the 1st or 2nd Tuesday of every month.  I had the same problem early on with my testing donors, which made me anrgy cause I was trying hard to transplant before having to start dialysis.  They were in no hurry whatsoever and I believe they even took a vacation somewhere along the lines, which wasted an entire month.  Although, I think that wasn't the "committee", but the tranplant coordinator that was setting up my next donor to be tested.  I remember being soooo mad.