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Message |
Mininghokie
Member
Username: Mininghokie
Post Number: 1
Registered: 08-2011
| | Posted on Thursday, August 11, 2011 - 04:39 am: | 
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Hello everyone, I'm new here. My wife was diagnosed with liver failure earlier this year. She was placed on the liver transplant list in April and currently has a meld score of 27. I have a question that's probably a no brained. If you could move your loved one to a region with a smaller list would you? We currently live in California and are currently on the list at Stanford. There are currently over 100 people with type o blood and a meld score over 25 waiting for a liver in this region. In region 11 there are currently 5. My parents live in Virginia and could keep a great eye on her. I petty much have made up my mind on what I'm going to do, but does anyone know how hard it is to change hospitals and regions? Do I need to get a referral from stanford? Any info would be great. |
Bob2006
Member
Username: Delgador
Post Number: 223
Registered: 06-2008
| | Posted on Thursday, August 11, 2011 - 09:50 am: |
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You can be listed at another region's transplant center.
You may have to start the whole transplant evaluation process again, you can always tell the truth to the "new" transplant center and they may accept the documentation from your current tx center.
There may be over 100 people with type O, but her MELD score may be on the verge of increasing soon, thus improving the chances for a speedy tx. Ask your tx coordinator or center about that she may not need to change centers.
Best wishes
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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DAND33
Member
Username: Dand33
Post Number: 3
Registered: 08-2011
| | Posted on Friday, August 12, 2011 - 12:37 pm: |
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I was tired of waiting so I dual listed at Cleveland Clinic. I was finally transplanted in Chicago where I live on March 1st but I had my options covered. I found transplating with the lowest MELDS at Cleveland, Indianna University (not a center of excelance) and Miami. Chicago, Boston, Madison all very high. I was lucky as I had HCC and received bonus points every 3 months. Cleveland accepted about 90% of my documentation. My blog is at Google - "Dan's Liver Blog" |
Never Quit
Member
Username: Smilinglady
Post Number: 7
Registered: 08-2011
| | Posted on Tuesday, September 27, 2011 - 12:11 pm: |
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How do you obtain these statistics of how many people per blood type on list per region? I am at 22 type o and they transplant at 25 to 28 here at University of Washington. So I'm wondering how to pursue other options. |
Mariel
Member
Username: Mariel
Post Number: 75
Registered: 02-2008
| | Posted on Tuesday, September 27, 2011 - 12:39 pm: |
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Ask your Transplant Team for suggestions that are close to you. Maybe some within Region 6 will transplant at MELD <22, so you wont have to travel very far.
At our TX center (CMC) in NC, for O blood, they transplant around MELD 17-18. There are 13 people between MELD 11-18 and only 1 person each at MELD 19-24 and 25+. (Huz is liver-waiting with O blood too)
But first, you may want to call your insurance company to see if they allow multiple listing, ie, pay for all the pre-transplant testing all over again. It is to the tune of $20,000! It is my impression most hospitals want their own data, to cover their butts.
Here is a region break-down:
http://optn.transplant.hrsa.gov/latestData/stateData.asp?type=region
From there you can find TONS of info for different centers. Call me if you want me to walk you through it; I look at it all the time and fully understand it. Or I posted directions here on TB (date 2/9/11, last updated on 2/13/11) how to maneuver through the UNOS / OPTN system to get waiting list data.
Best of luck!
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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Bob2006
Member
Username: Delgador
Post Number: 230
Registered: 06-2008
| | Posted on Tuesday, September 27, 2011 - 04:29 pm: |
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I tried listing at 4 different tx hospitals, all of them accepted test results from the previous one. I was denied tx at 3 centers before tx at the 4th center. Didn't have any problems with my insurance, but actually I was only listed and tx at the last center, one of the other centers tried to list me twice but was denied both times by UNOS (so they told me).
Good luck
Bob
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH |
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Mariel
Member
Username: Mariel
Post Number: 89
Registered: 02-2008
| | Posted on Thursday, November 10, 2011 - 05:15 pm: |
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Since this post, we've decided to multi-list. Takes about 3 weeks after submitting app, most of the info comes from your current transplant center. Huz has been accepted for eval testing @ VCU and Mayo/Jacksonville. It was remarkably easy. Some tests were accepted, some need repeating (old data), some were never required by our center. Mayo needs 2-3 weeks to do tests "the Mayo way," but they only have 11 patients for O blood, so we are gonna push through that. And hey, maybe the more they research, the better info they will have on Huz, maybe even extra pts. PM me if you are still considering this option, I just did a ton of transplant center research on Regions 2+3+11, but also nationally. Hope your wife is doing okay. eHugs!
Mariel, wife of PSCott
www.caringbridge.org/visit/scottcarr |
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