Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Good idea – but we’ve got an uphill battle. I currently have an exception because I have a biliary drain. However, they’ve changed the rules, tightened them up, and the next time I’m evaluated (March) my extra points go away. Unless, of course, I get a liver before then. My transplant coordinator said that she thinks the doctors are going to squawk enough that they’ll reverse the new rules, but who knows. But I’m game – what do we do? nita .. He feels PSC patients need to petition UNOS for an exception to the MELD . He said this support group is perfect for this. He mentioned another rare pediatric liver group that successfully accomplished this, unfortunately I don't remember which disease group but I can ask. Wouldn't it be great if this group and PSC Partners organized around this issue? I suggest we come up with a plan. Let's brain storm. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Reggie, Let me know how I can help! Sandi in VA He feels PSC patients need to petition UNOS for an exception to the MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Sandi, Thanks. Right now I'm making contacts and gathering info. When I have something concrete I'll let the group know and ask for help. Reggie To: Sent: Tuesday, January 27, 2009 9:13:51 AMSubject: Re: Re: MELD Reggie,Let me know how I can help!Sandi in VAHe feels PSC patients need to petition UNOS for an exception to the MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Sandi, Thanks. Right now I'm making contacts and gathering info. When I have something concrete I'll let the group know and ask for help. Reggie To: Sent: Tuesday, January 27, 2009 9:13:51 AMSubject: Re: Re: MELD Reggie,Let me know how I can help!Sandi in VAHe feels PSC patients need to petition UNOS for an exception to the MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Reggie, Let us know what you find out. As a 501©3, we have some restrictions, but we’ll have our legal team check this out when we know more… Ricky PSC 2003 From: [mailto: ] On Behalf Of Reggie Belmont Sent: Tuesday, January 27, 2009 5:23 PM To: Subject: Re: Re: MELD Hi Sandi, Thanks. Right now I'm making contacts and gathering info. When I have something concrete I'll let the group know and ask for help. Reggie He feels PSC patients need to petition UNOS for an exception to the MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Hi Reggie, Let us know what you find out. As a 501©3, we have some restrictions, but we’ll have our legal team check this out when we know more… Ricky PSC 2003 From: [mailto: ] On Behalf Of Reggie Belmont Sent: Tuesday, January 27, 2009 5:23 PM To: Subject: Re: Re: MELD Hi Sandi, Thanks. Right now I'm making contacts and gathering info. When I have something concrete I'll let the group know and ask for help. Reggie He feels PSC patients need to petition UNOS for an exception to the MELD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 ---Original Message----- He feels PSC patients need to petition UNOS for an exception to the MELD Actually our group has dealt with this topic (and UNOS) before. My husband & I attended an UNOS regional meeting in Dallas and spoke to several reps ourselves. This group wrote letters and sent them to UNOS during an open comment period. They not only listened to us, but enclosed some of our letters and passed them out to their members during the meeting. (For long timers, you’ll remember Laurie’s letter was especially touching.) The end result/outcome of our work was good. While “PSC” didn’t get extra points just for having PSC (and truthfully I don’t think it’s fair we do.) They did decide to give PSCer’s (and all others) extra points for cancer or precancerous lesions. I wouldn’t expect a doctor to know about this, but it did happen. Tim R. does an excellent job of showing how and why PSC doesn’t hinder PSCer’s from getting transplants in a timely fair manner. I’ve always wanted to keep a copy of his explanation, but have never seemed to manage to do that. Hopefully he’ll step in and give that now. Ken got his transplant with a MELD 14 or 15 (can’t remember). The root of any transplant problem begins with a limited number of organs. Plain and simple, not enough organs to go around. HTH Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 ---Original Message----- He feels PSC patients need to petition UNOS for an exception to the MELD Actually our group has dealt with this topic (and UNOS) before. My husband & I attended an UNOS regional meeting in Dallas and spoke to several reps ourselves. This group wrote letters and sent them to UNOS during an open comment period. They not only listened to us, but enclosed some of our letters and passed them out to their members during the meeting. (For long timers, you’ll remember Laurie’s letter was especially touching.) The end result/outcome of our work was good. While “PSC” didn’t get extra points just for having PSC (and truthfully I don’t think it’s fair we do.) They did decide to give PSCer’s (and all others) extra points for cancer or precancerous lesions. I wouldn’t expect a doctor to know about this, but it did happen. Tim R. does an excellent job of showing how and why PSC doesn’t hinder PSCer’s from getting transplants in a timely fair manner. I’ve always wanted to keep a copy of his explanation, but have never seemed to manage to do that. Hopefully he’ll step in and give that now. Ken got his transplant with a MELD 14 or 15 (can’t remember). The root of any transplant problem begins with a limited number of organs. Plain and simple, not enough organs to go around. HTH Barb in Texas Quote Link to comment Share on other sites More sharing options...
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