Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Dear group, I am writing to inform you that I will be meeting with an attorney at the end of this month regarding the best way to approach fighting for changes in UNOS' policies regarding acception points. I will also begin meeting with Senators and Congressman this month, in the regions in which I am listed. The following is a blurb from my last CaringBridge post which gives a better outline of my/our purpose. I would like to put together bio pages for those who have passed away, as well as those who are listed with a very low MELD score (despite the fact that they are very ill), and those who were transplanted with a live donor liver. The latter is for comparison of patients that fit within the bell curve and those that do not. Anyone who is interested in helping in any way, please, feel free to write me privately. This is a fight that I am obligated to fight...I promised Quinn that I would not forget what she went through and that I would continue the fight after she was gone. Now, the system threatens the lives of others close to me and I'm not prepared to bury anyone else. I feel I cannot continue to complain about the system, and get angry about what it lacks and what that is doing to my friends, if I am not willing to fight for what I believe in. "Together in the fight, whatever it takes!" CaringBridge post, Oct. 1, 2007 I'd also like to report, on a very serious note, that I have officially decided to draw attention to the MELD system and how it lacks for those who fall outside of the bell curve. My goal is to push for a standardized protocol, that all regions must abide by, regarding acception points. The purpose of the MELD system was to ensure objectivity when dealing with all end stage liver disease (potential transplant) patients. However, as most of you who have PSC, or care for PSCers, know it remains completely subjective for patients who must rely on acception points to even stand a chance of getting a cadaveric liver. This is true for Primary Biliary Cirrhosis (PBC) patients, and those with complications like my friend , such as a clot in the portal vein that threatens to completely block the blood supply to the liver at any time. The risks of death from these conditions is just as great as those with a high MELD score, yet we must rely on the writing abilities of our coordinators as well as the reception of such a letter by the representative at United Network of Organ Sharing (UNOS). The reps at UNOS make the decision to accept or deny the request for the acception points. They may agree with the reasons for the request but deny it if they feel the MELD score requested is too high, however, they are not allowed to state 'why' the request was turned down, regardless of the reason. This leaves the coordinators guessing what they should change in order to increase the chances of approval. As you can see, this takes additional time and does not guarantee that the acception points will ever be granted. My three closest friends lives were directly affected by the flaws in this system. PSC patients are high risk for cancer of the bile ducts (cholangiocarcinoma or CC) and prolonging transplant only raises the risk. lost her battle with PSC due to complications from CC. was forced to accept her husband's liver, and Ali, her son's in order to stand a chance at survival -- their MELD scores too low to be eligible for a deceased donor. , now has serious complications and is in need of a new liver, but the doctors are reluctant to list her knowing that her MELD score would be too low to get her a liver and she is not eligible for a live donor, again. I could take up your entire day with the ins and outs of the MELD system, but I hope you have a basic idea of our goal. I'm also hoping that you will join our forces in pushing for the necessary change. I plan to give PSC, and others cheated by the current system, a face and a name so we are no longer just a statistic. Please, pray that God gives me the strength and leads my path through this endeavor! Big hugs and thanks to all of you who are in this fight with us, either in prayer or in deed! Love, http://www.caringbridge.org/visit/melaniejs See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Dear Mel, I am with you all the way. Ali Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Dear Mel, I am with you all the way. Ali You always have been and I appreciate you more than you'll know! See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Haven't heard from Montel- Keenly awaiting an answer! Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Hi I am new to the group and also the liver transplant business. I thoroughly know the bone marrow donation and it also is very, very political. We searched for over 4 years both here in the US and also 12 other international registries and 3 private ones. We never found a match for my daughter due to a rare haplotype on my side of the family. We opted for more chemo and now after 4 years of it suffer the consequences. I am so thankful though she is here today. Is there any info on the liver transplant registries that I can read to get up to speed. We worked very hard with Senator Clinton to change insurance companies coverage of transplants and transplant related searches. There is even a bill that was passed because of this. I would love to help out in anyway. I am hoping I can. Thank you 8/07 crohn's, 9/07 PSC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2007 Report Share Posted October 3, 2007 , Liver and bone marrow transplants are quite different in their requirements for a match between donor and recipient. For liver transplants blood type and size are the primary factors although HIV/HCV status can be a factor also. The limitation for liver transplants is the availability of donated organs. Liver allocation is controlled by UNOS and is detailed in their Policies 3.6 Organ Distribution: Allocation of Livers, available at http://www.unos.org/PoliciesandBylaws2/policies/pdfs/policy_8.pdf Data, which is updated weekly, on donors, transplants and waiting lists can be found at http://www.optn.org/latestData/advancedData.asp The build report feature lets you slice the data in may different ways to look at features you consider significant. Tim R > > I am new to the group and also the liver transplant business. I > thoroughly know the bone marrow donation ... > > Is there any info on the liver transplant registries that I can read to > get up to speed. ... > 8/07 crohn's, 9/07 PSC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2007 Report Share Posted October 3, 2007 , Can you tell us about the bone marrow donation? I know nothing about it. Or where I can get data on it? Thanks. Arman arman_shirin@... Re: MELD system revisions HiI am new to the group and also the liver transplant business. I thoroughly know the bone marrow donation and it also is very, very political. We searched for over 4 years both here in the US and also 12 other international registries and 3 private ones. We never found a match for my daughter due to a rare haplotype on my side of the family. We opted for more chemo and now after 4 years of it suffer the consequences. I am so thankful though she is here today. Is there any info on the liver transplant registries that I can read to get up to speed. We worked very hard with Senator Clinton to change insurance companies coverage of transplants and transplant related searches. There is even a bill that was passed because of this. I would love to help out in anyway. I am hoping I can.Thank you 8/07 crohn's, 9/07 PSC Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
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