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TransplantBuddies.org Forums » Liver - Multivisceral » TX, multiple lists, and traveling out of state « Previous Next »
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HitcH
Member
Username: Hitch55

Post Number: 1
Registered: 09-2014
Posted on Tuesday, September 16, 2014 - 03:17 pm:   Edit Post Delete Post Print Post

Hi all,

New to the forum but didn't really know where to turn!

I have Autoimmune Hepatitis, and have had it for about 13 years now. I was diagnosed in the UK and was on the waiting list out there, but now on the waiting list in California, as my MELD is 18 (so pretty much no chance of getting a new liver, their wait list is over 3000!). My doctor suggested I look at getting my transplant done at another center - Louisiana, Tennessee etc, since their wait lists are in the low hundreds.

Here's where I'm drawing a blank - coming from the UK, if you need a liver, you get one, and you pay nothing. In the US theres all these ridiculous health insurance hoops to jump through. I've been trying to find out if my insurance covers me getting a transplant at another center, or even getting evaluated at another center. This is proving uneventful, and I've even been told that I can get on the waiting list at another facility, but that if I was offered a liver, I wouldn't have to travel there - the organ would get transported to my nearest center (Stanford). This seems a little too good to be true, so I enquired further and they said that the insurance doesn't pay for the transportation, but that the 'Affinity Medical Group' pays for it, and the insurance pays for the TX procedure itself.

Has anyone else been told anything like this? Surely if I get offered a liver by Ochsner in Louisiana, they'd want me to have the procedure done there, and would be reluctant to send the liver to Stanford? Or is it not up to them, since the livers are distributed by UNOS?

Any advice or information anyone has would be greatly appreciated, as I'm confused enough, without adding insurance confusion to the mix :S

Thanks
garben
Member
Username: Garben

Post Number: 18
Registered: 10-2007
Posted on Tuesday, September 16, 2014 - 03:39 pm:   Edit Post Delete Post Print Post

Hi HitcH,
Everything I have ever read or heard is that if you are are listed at multiple centers you will need to be close enough to those centers to get there in a matter of a few hours of getting the call. Things can change though. I would give UNOS a call and ask them. I found this number on there web site.
888-894-6361
Garben

Liver Transplant, 2/28/07
Memorial Hermann, Houston, TX.
HitcH
Member
Username: Hitch55

Post Number: 2
Registered: 09-2014
Posted on Tuesday, September 16, 2014 - 03:55 pm:   Edit Post Delete Post Print Post

Thanks VM Garben
Bob2006
Member
Username: Delgador

Post Number: 268
Registered: 06-2008
Posted on Wednesday, September 17, 2014 - 07:40 pm:   Edit Post Delete Post Print Post

When you get a TX the organ is transported to the center where you are listed. UNOS is comprised of many regions with many tx centers, an organ that becomes available for tx in a region is offered to the patients listed in the centers listed in that region and awarded to a patient based on a complex formula which includes, in the case of a liver, the MELD among other factors.
Go to the UNOS web site for more info.

Just curious if in the UK as you say "coming from the UK, if you need a liver, you get one, and you pay nothing." , where in the list would you be there and why did you choose the US.

Wishing you the best

Bob2006
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH
Mariel
Member
Username: Mariel

Post Number: 107
Registered: 02-2008
Posted on Thursday, October 23, 2014 - 07:06 am:   Edit Post Delete Post Print Post

Hi there HitcH, Sorry late in responding. Never heard of Affinity Medical Group or sending organs to where the patient is. Typically today, the patient has to be close to where the organ is harvested. I've been doing some pro bono consulting, helping pre-tx patients, particularly those in high MELD areas, find lower wait lists and therefore quicker transplants around the US. One patient/client/friend I helped relocate from San Diego on July 21 got his transplant in 35 days later at IUH! His MELD was mid 20s however and hit the list just right. I've done a lot of independent statistical research on the 134 transplant centers in the 58 OPOs in the 11 Regions here, namely MELD@transplant, current wait lists and success survival stats, so if you want help noodling some ideas, gimme a call. I am taking new 5 "BETA clients" come November 1 in order to review and make suggestions to coincide with Insurance open enrollment period. You're right, insurance dictates everything here in the US so it is important to select your policy carefully so you have robust transplant benefits. Take a peak at my Facebook group Compare Transplant Centers, in particular the About and Contact tabs. Hope to hear from you, you sound exactly like someone I am targeting to find for my next go-round.
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr

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