Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Tim-- Thanks for all the information you provide. Just wondering..., to what factors do they attribute the extremely long waits in New England ? I always thought it was because there were more people waiting here in this region(I live in NH, but am not listed as I am pretty much asymtomatic) because of the high concentrattion of teaching hospitals/transplant centers in Boston, etc. Your data shows otherwise (not many people on list and almost no donors ????) Looks like we have to work much, much harder on donor awareness here. Looking forward to your response. H. Re: NEW POLICY > Biddy, > > You are right there is nothing in the new policy that restricts > who gets listed for a liver transplant. Those who's liver was > destroyed by alcohol or drug abuse are just a eligible as Hep C > victims or PCS sufferers (if they have stopped the liver abuse). > > What has changed is that now severely ill *acute* patients in > the OPO region will be offered a donated liver before it will be > offered to chronic patients (status 2 & 3) in the area. Since in > 1997 143 status 1 patients died while waiting for a liver > (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is > expected that about 150 livers that would have be offered to > status 2 or 3 patients will go to status 1 patients under the > new policy (out of a total of 4400 in 1998) about 3.4%. > > The sad thing is that the great discrepancy in waiting times > that initiated this policy was minimal for status 1 patients. > For other patients, where there has been a great difference > between regions, this new policy does nothing. The lastest data > on waiting times > (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) > shows that 2B patients in region 11 (where Duke is) had a median > wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and > region 1 (New England) had so few transplants a number was not > computed, but given what is shown, 85 waiting and fewer than 10 > txs, the expected waiting time is more than 8.5 years! This is > why has been waiting at 2B for over a year and a half, > and why national " averages " are an unfair way to report what a > transplant candidate can expect. I apologize for my use of them > in the past, but because much of the data is readily available > only nationally, it is sometime the only way I can analyze it. > > Tim > > --- Biddy Santon wrote: > > , > > I went to the website you sent me -- UNOS -- and I cannot > > find where we > > will eventually not be eligible to receive a liver. > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > http://clickhere./click/432 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 TIM DO YOU LIVE IN SOUTHERN CALIFORNIA I LIVE IN. ORANGE COUNTY THANKS MARSHA ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Tim, What are the statistics in Southern California? Peg Romlein wrote: > Biddy, > > You are right there is nothing in the new policy that restricts > who gets listed for a liver transplant. Those who's liver was > destroyed by alcohol or drug abuse are just a eligible as Hep C > victims or PCS sufferers (if they have stopped the liver abuse). > > What has changed is that now severely ill *acute* patients in > the OPO region will be offered a donated liver before it will be > offered to chronic patients (status 2 & 3) in the area. Since in > 1997 143 status 1 patients died while waiting for a liver > (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is > expected that about 150 livers that would have be offered to > status 2 or 3 patients will go to status 1 patients under the > new policy (out of a total of 4400 in 1998) about 3.4%. > > The sad thing is that the great discrepancy in waiting times > that initiated this policy was minimal for status 1 patients. > For other patients, where there has been a great difference > between regions, this new policy does nothing. The lastest data > on waiting times > (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) > shows that 2B patients in region 11 (where Duke is) had a median > wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and > region 1 (New England) had so few transplants a number was not > computed, but given what is shown, 85 waiting and fewer than 10 > txs, the expected waiting time is more than 8.5 years! This is > why has been waiting at 2B for over a year and a half, > and why national " averages " are an unfair way to report what a > transplant candidate can expect. I apologize for my use of them > in the past, but because much of the data is readily available > only nationally, it is sometime the only way I can analyze it. > > Tim > > --- Biddy Santon wrote: > > , > > I went to the website you sent me -- UNOS -- and I cannot > > find where we > > will eventually not be eligible to receive a liver. > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > http://clickhere./click/432 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Tim, What are the statistics in Southern California? Romlein wrote: > Biddy, > > You are right there is nothing in the new policy that restricts > who gets listed for a liver transplant. Those who's liver was > destroyed by alcohol or drug abuse are just a eligible as Hep C > victims or PCS sufferers (if they have stopped the liver abuse). > > What has changed is that now severely ill *acute* patients in > the OPO region will be offered a donated liver before it will be > offered to chronic patients (status 2 & 3) in the area. Since in > 1997 143 status 1 patients died while waiting for a liver > (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is > expected that about 150 livers that would have be offered to > status 2 or 3 patients will go to status 1 patients under the > new policy (out of a total of 4400 in 1998) about 3.4%. > > The sad thing is that the great discrepancy in waiting times > that initiated this policy was minimal for status 1 patients. > For other patients, where there has been a great difference > between regions, this new policy does nothing. The lastest data > on waiting times > (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) > shows that 2B patients in region 11 (where Duke is) had a median > wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and > region 1 (New England) had so few transplants a number was not > computed, but given what is shown, 85 waiting and fewer than 10 > txs, the expected waiting time is more than 8.5 years! This is > why has been waiting at 2B for over a year and a half, > and why national " averages " are an unfair way to report what a > transplant candidate can expect. I apologize for my use of them > in the past, but because much of the data is readily available > only nationally, it is sometime the only way I can analyze it. > > Tim > > --- Biddy Santon wrote: > > , > > I went to the website you sent me -- UNOS -- and I cannot > > find where we > > will eventually not be eligible to receive a liver. > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > http://clickhere./click/432 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Hi! Thanks guys for this great info. I printed it out and will take it with me to visit my son and let him see this!! All of you in our support group have been so very good to me. I am having a lot of trouble, memory, etc., and pain (as usual). I had a heck of a day today in regard to this horrible pain. I am supposed to leave Thursday morning, so everyone keep their fingers crossed! The way it looks now I won't be able to travel, but we will see! Again that all of you for all of your kindness, patience and helping me so very much. The guy that wrote that he had PSC for 8 years and said he wondered how we handled this, I want to say to him -- SMILE!! It really does help. Hugs, Biddy Re: NEW POLICY >Tim, >What are the statistics in Southern California? > > Romlein wrote: > >> Biddy, >> >> You are right there is nothing in the new policy that restricts >> who gets listed for a liver transplant. Those who's liver was >> destroyed by alcohol or drug abuse are just a eligible as Hep C >> victims or PCS sufferers (if they have stopped the liver abuse). >> >> What has changed is that now severely ill *acute* patients in >> the OPO region will be offered a donated liver before it will be >> offered to chronic patients (status 2 & 3) in the area. Since in >> 1997 143 status 1 patients died while waiting for a liver >> (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is >> expected that about 150 livers that would have be offered to >> status 2 or 3 patients will go to status 1 patients under the >> new policy (out of a total of 4400 in 1998) about 3.4%. >> >> The sad thing is that the great discrepancy in waiting times >> that initiated this policy was minimal for status 1 patients. >> For other patients, where there has been a great difference >> between regions, this new policy does nothing. The lastest data >> on waiting times >> (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) >> shows that 2B patients in region 11 (where Duke is) had a median >> wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and >> region 1 (New England) had so few transplants a number was not >> computed, but given what is shown, 85 waiting and fewer than 10 >> txs, the expected waiting time is more than 8.5 years! This is >> why has been waiting at 2B for over a year and a half, >> and why national " averages " are an unfair way to report what a >> transplant candidate can expect. I apologize for my use of them >> in the past, but because much of the data is readily available >> only nationally, it is sometime the only way I can analyze it. >> >> Tim >> >> --- Biddy Santon wrote: >> > , >> > I went to the website you sent me -- UNOS -- and I cannot >> > find where we >> > will eventually not be eligible to receive a liver. >> ------------------------------------------------------------------------ >> GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. >> Save on vitamins & supplements. Use coupon code: EGROUPS at checkout >> http://clickhere./click/432 >> >> eGroups.com home: /group/ >> - Simplifying group communications > > >------------------------------------------------------------------------ >Click Here to apply for a NextCard Internet Visa and start earning >FREE travel in HALF the time with the NextCard Rew@rds Program. >http://clickhere./click/449 > > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 I don't have hard statistics but I think blood types are pretty much the same distribution regionally. Even if a region had a lot of a certain blood type population, that would probably affect both donors and recipients alike. I have seen data that says that donation rates vary by a factor of as much as 4 between regions. This is a huge opportunity and we could do a lot more transplants if we could get those underperforming regions up to the national average. Roy T. Re: NEW POLICY > Someone once mentioned (perhaps in this group) that there are also regional > differences in the most prevalent blood types--what I mean is that some > areas get more AB donors than others and if you are AB your wait may be > shorter than if you are listed where there are mostly O donors...and so > on.......... > Penny > > Romlein wrote: > > > Biddy, > > > > You are right there is nothing in the new policy that restricts > > who gets listed for a liver transplant. Those who's liver was > > destroyed by alcohol or drug abuse are just a eligible as Hep C > > victims or PCS sufferers (if they have stopped the liver abuse). > > > > What has changed is that now severely ill *acute* patients in > > the OPO region will be offered a donated liver before it will be > > offered to chronic patients (status 2 & 3) in the area. Since in > > 1997 143 status 1 patients died while waiting for a liver > > (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is > > expected that about 150 livers that would have be offered to > > status 2 or 3 patients will go to status 1 patients under the > > new policy (out of a total of 4400 in 1998) about 3.4%. > > > > The sad thing is that the great discrepancy in waiting times > > that initiated this policy was minimal for status 1 patients. > > For other patients, where there has been a great difference > > between regions, this new policy does nothing. The lastest data > > on waiting times > > (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) > > shows that 2B patients in region 11 (where Duke is) had a median > > wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and > > region 1 (New England) had so few transplants a number was not > > computed, but given what is shown, 85 waiting and fewer than 10 > > txs, the expected waiting time is more than 8.5 years! This is > > why has been waiting at 2B for over a year and a half, > > and why national " averages " are an unfair way to report what a > > transplant candidate can expect. I apologize for my use of them > > in the past, but because much of the data is readily available > > only nationally, it is sometime the only way I can analyze it. > > > > Tim > > > > --- Biddy Santon wrote: > > > , > > > I went to the website you sent me -- UNOS -- and I cannot > > > find where we > > > will eventually not be eligible to receive a liver. > > ------------------------------------------------------------------------ > > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > > http://clickhere./click/432 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > http://clickhere./click/432 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 1999 Report Share Posted July 6, 1999 Tim this is a good explanation. What's disturbing about this info is that there are a lot of people dying on the waiting list in addtion to the status 1's. There were hundreds of people who died as status 3's and status 7s (temporarily inactive). This is very alarming and no change in allocation policy is going to fix the basic problem, which is that the demand vastly exceeds the supply. And it is getting much worse. Roy T. Re: NEW POLICY > Biddy, > > You are right there is nothing in the new policy that restricts > who gets listed for a liver transplant. Those who's liver was > destroyed by alcohol or drug abuse are just a eligible as Hep C > victims or PCS sufferers (if they have stopped the liver abuse). > > What has changed is that now severely ill *acute* patients in > the OPO region will be offered a donated liver before it will be > offered to chronic patients (status 2 & 3) in the area. Since in > 1997 143 status 1 patients died while waiting for a liver > (http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm), it is > expected that about 150 livers that would have be offered to > status 2 or 3 patients will go to status 1 patients under the > new policy (out of a total of 4400 in 1998) about 3.4%. > > The sad thing is that the great discrepancy in waiting times > that initiated this policy was minimal for status 1 patients. > For other patients, where there has been a great difference > between regions, this new policy does nothing. The lastest data > on waiting times > (http://207.86.105.205/patients/101_hospital_mwt_liver.htm) > shows that 2B patients in region 11 (where Duke is) had a median > wait of 145 days, in region 2 (DE, MD, NJ, PA & WV) 364 days and > region 1 (New England) had so few transplants a number was not > computed, but given what is shown, 85 waiting and fewer than 10 > txs, the expected waiting time is more than 8.5 years! This is > why has been waiting at 2B for over a year and a half, > and why national " averages " are an unfair way to report what a > transplant candidate can expect. I apologize for my use of them > in the past, but because much of the data is readily available > only nationally, it is sometime the only way I can analyze it. > > Tim > > --- Biddy Santon wrote: > > , > > I went to the website you sent me -- UNOS -- and I cannot > > find where we > > will eventually not be eligible to receive a liver. > ------------------------------------------------------------------------ > GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. > Save on vitamins & supplements. Use coupon code: EGROUPS at checkout > http://clickhere./click/432 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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