Transplant Process a Mystery

[brandywine]

First, let me say that I may HATE dialysis, but I LOVE this forum. It has gotten me through some tough times. You guys are so great!

Secondly, I am overjoyed to say that one of my best friends (who coincidentally is renally challenged as well), just received a transplant a week ago after being on the list only 6 months. I'm OVERJOYED for her.

However, it brings me to a question, how exactly does the transplant process work? I have been on the same list for a year now. I know that since I am O+ that it will be a longer wait anyway, but certainly there were other A+ matches before her. Can anybody clear up this mystery for me? And do you have any way of knowing when you are close to getting selected? She had ZERO notice.

[MooseMom]

I don't have all the answers, but I CAN tell you these things...

1.  A recipient's PRA can affect someone's wait time, either for the better or for the worse.  If you have a high PRA, then there will be a greater donor population that will not be a match for you.  However, if you have a high PRA and a match DOES become available, you will probably move way up the list because of the fact that you are so much harder to match; no one wants to bypass you if the opportunity to match you is so very rare.  So, perhaps your friend had a very high PRA.  Do you know?

2.  A 300lb man on the waitlist needs a bigger kidney than a 150 lb woman.  There are more factors to consider besides blood type and waiting time.

If I had to guess, I would imagine that your friend has a higher PRA AND the organ that was available was a 6/6 antigen match.  Her overall physical characteristics probably matched those of the donor.  I also have to wonder if she accepted an ECD kidney.  Without knowing more, that's my guess.

[brandywine]

OMG. You are not going to believe what i just found out. I'm sooooo frustrated.
Okay, so I just read one of okarol's posts where she linked to the http://www.ustransplant.org/ site where they have a kidney wait time calculator. Average wait time listed for my friend's blood type at her hospital-6 months!!! Which is spot on to when she got the call. Average wait time for my blood type at her hospital? 1 year!!! (exactly the time that I've been on the list). At my hospital??? 3 1/2 years. Wth?

I distinctly remember being told that I could register in another region but not THAT hospital because it was the same list. I'm really ticked. How does information like this NOT get shared? Like, REALLY, my neph doesn't know this??? My nurses??? COME ON!

Okay, rant over. Now I need to figure out if BCBS will pay for the second evaluation at a hospital 80 miles away from the other one.

[cariad]

If she was a 6-antigen match, she would jump the queue regardless of PRA.

Different transplant centres have different wait times. Usually, hospitals in the same procurement area will have similar wait times, but I think with the advent of these new choices for recipients (EC and high-risk kidneys) it is that much more difficult to gauge your wait by the experience of others. Perhaps that one hospital has a large number of patients willing to take EC kidneys, and that worked in your friend's favour. Hospitals do not like you to dual-list so they will try and try to convince you not to, but I thought the rule that patients cannot multiple list within the same procurement area had been eliminated.

Insurance is a whole other baffling component. Do you have an HMO or PPO? Some hospitals do not charge anything for the eval, so then the insurance company should have no objection. You already have your tests done, so you would (likely) not need any more. The second listing tends to be quick and easy. I would investigate further. Good luck!