Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 I think we need to address this situation with facts and not emotions. Please read the news release describing the PROPOSED policy changes. I see nothing that states organs will be going nationally at the expense of regional waiting lists. It is very specific in stating that only after the list of ALL local and regional recipients at all levels is exhausted will the organ be offered nationally. This is a supply and demand situation and, unfortunately the demand exceeds the supply...and probably always will. Where is it stated that PSC patients cannot be a priority 1? Have never seen that. What are the national statistics for transplantation of the variouos priority levels? Seems like there is considerable diversity in what transplant-eligible patients are being told. I understand the frustration over folks who have " done " something to damage their livers perhaps getting ahead of us who are " innocent victims " of chronic liver disease, however, I think we collectively will get further with this with an informed approach versus raw emotion. I further realize that this forum is for us to get our feelings heard by others who are experiencing the same frustrations and misunderstandings that we come across every day...this is good. My only caution is that we present our case in the most informed manner possible when we are discussing our issues outside the support group. Darnell At 10:27 AM 6/28/99 -0400, you wrote: >I just called UNOS, and told them of our concern. I am really not happy with >my discussion with them. I was told that the new policy would effect 1% of >the population awaiting liver transplants, over the next 5 years. >Unfortunately, the 1% that it will effect is patients with disease like ours. > The chronic liver disease patients. Maybe I'm wrong about this, but, seeing >as how we can never get to a status 1, and the livers will go to status 1 >patients first, doesn't this mean that our chances of getting a new liver are >greatly decreased? I told the man that I spoke to how unfair I thought it >was. We did NOTHING to cause our disease, and we fight it daily for many >years. Living with all the horrible side effects for all those years, then, >when it comes time for transplant...we may not get one???? I think I may >call the man that did my article in the local newspaper, and see if he will >do a story on this. What does everyone else think? I think we should fight >this all the way!!!! >Love, > > >------------------------------------------------------------------------ >Listen to Britany spears and more top artisits >now at audiohighway.com! >http://clickhere./click/395 > > >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 June 28, 1999 Report Share Posted June 28, 1999 Darnell wrote: > . . . Where is it stated that PSC patients cannot be a priority 1? Have > never seen that. As in my previous post, status 1 must have liver failure within 8 weeks of the first symptoms and the absence of pre-existing liver disease is critical to the diagnosis. This pretty much excludes anyone under treatment for PSC. I'm not sure if an untreated PSC patient (if one waited that long) who whet into liver failure could get listed as status 1 or not. > What are the national statistics for transplantation of > the variouos priority levels? If all those who died while waiting at status 1 in 1997 had received a transplant, the percentage of transplants going to status 1 would have increased from 18.0% to 21.5%. See the following sites for the data: Waiting List Status at Transplant http://www.unos.org/Data/anrpt98/AR98_TABLE22_09_LI.HTM Ending Medical Urgency Status (At Death) http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm Other interesting statistics: Patient Survival Rates at Three Months and at One, Three and Five Years http://www.unos.org/Data/anrpt98/ar98_table33_07_li.htm Recipient Description at Time of Transplant http://www.unos.org/Data/anrpt98/ar98_table22_07_li.htm Tim ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 You mentioned arming yourself with facts in challenging this policy. I agree, but one thing to be mindful of is that statistics can be misleading. Assuming that the average patient that fits within the definition of status 1 has an 85% chance of surviving 5 years, and the average patient fitting within the definition of status 2 has a 75% chance of surviving 5 years, you have to ask yourself whether that average 10% differential justifies excluding from top priority status all status 2 (chronic) patients. The problem is that it is very dangerous to make blanket policies based on averages, particularly when you're talking about medical treatment because there are so many individual variables, complications, and possible outcomes. For example, in establishing this bright-line rule (only acutes in status 1, chronics limited to status 2), there is no account taken of individual factors that could affect survival rate, such as age and the presence of other health problems. One of the transplant nurses I spoke with put it this way: who should get the liver -- the 60 year old status 1 smoker who has a history of health problems or the 25 year old status 2 patient who, absent the liver disease, has been in good health and has not suffered much systemic damage from liver disease? In such a case, the status 1 patient may in fact have a lower chance of surviving 5 years than the status 2 patient, but under the UNOS policy, the status 1 patient always gets the liver. I used this example only to show that averages don't necessarily yield good results. I'm not suggesting in any way that 60 year olds or smokers or anybody else shouldn't be transplanted, nor am I suggesting that doctors should make value judgments about their patients. In my opinion, doctors should NOT. Rather, I think the former policy, which set medical standards for status 1 patients that were the same for chronic and acute patients, was a better policy. The bottom line for me is that I don't think the slight difference in averages justifies the blanket exclusion of all chronic patients. In addition, predicting how well a transplant patient will fare after transplantation is pretty far from science. Do you want to have a policy that ensures that some chronic patients will die when, according to UNOS's own figures, they otherwise had a 70 or 75 % chance of survival? It's not like these chronic patients have a 10 or 20 % survival rate, for goodness sake. Sorry -- I'm rambling again. Re: NEW POLICY >I think we need to address this situation with facts and not emotions. >Please read the news release describing the PROPOSED policy changes. I see >nothing that states organs will be going nationally at the expense of >regional waiting lists. It is very specific in stating that only after the >list of ALL local and regional recipients at all levels is exhausted will >the organ be offered nationally. This is a supply and demand situation >and, unfortunately the demand exceeds the supply...and probably always >will. Where is it stated that PSC patients cannot be a priority 1? Have >never seen that. What are the national statistics for transplantation of >the variouos priority levels? Seems like there is considerable diversity >in what transplant-eligible patients are being told. > >I understand the frustration over folks who have " done " something to damage >their livers perhaps getting ahead of us who are " innocent victims " of >chronic liver disease, however, I think we collectively will get further >with this with an informed approach versus raw emotion. > >I further realize that this forum is for us to get our feelings heard by >others who are experiencing the same frustrations and misunderstandings >that we come across every day...this is good. My only caution is that we >present our case in the most informed manner possible when we are >discussing our issues outside the support group. > >Darnell > >At 10:27 AM 6/28/99 -0400, you wrote: >>I just called UNOS, and told them of our concern. I am really not happy with >>my discussion with them. I was told that the new policy would effect 1% of >>the population awaiting liver transplants, over the next 5 years. >>Unfortunately, the 1% that it will effect is patients with disease like ours. >> The chronic liver disease patients. Maybe I'm wrong about this, but, seeing >>as how we can never get to a status 1, and the livers will go to status 1 >>patients first, doesn't this mean that our chances of getting a new liver are >>greatly decreased? I told the man that I spoke to how unfair I thought it >>was. We did NOTHING to cause our disease, and we fight it daily for many >>years. Living with all the horrible side effects for all those years, then, >>when it comes time for transplant...we may not get one???? I think I may >>call the man that did my article in the local newspaper, and see if he will >>do a story on this. What does everyone else think? I think we should fight >>this all the way!!!! >>Love, >> >> >>------------------------------------------------------------------------ >>Listen to Britany spears and more top artisits >>now at audiohighway.com! >>http://clickhere./click/395 >> >> >>eGroups.com home: /group/ >> - Simplifying group communications >> >> >> > > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and find out how you could win two round-trip tickets >anywhere in the U.S.! http://clickhere./click/368 > > >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 June 28, 1999 Report Share Posted June 28, 1999 , I like your statement about statistics being misleading. I find the worst problem is that people use them too generally. Yes, we can be lumped into the group " chronic liver patients, " but not chronic patients are the same (as you stated). I think an objective scoring system CAN be developed that would take all factors into account. Survival statistics can be developed for all areas. Age, family support, disease, habits, etc.. A score can be given for each then all can be added up. I.E. if a 25 yo has twice the odds of living 5 yrs than a 50 yo, he/she should score twice as high on the " age index. " If a smoker has 1/2 the odds of living the five years as compared to a non-smoker, than he/she should have half the points on the " habits index. " If PSC patients have 10% greater chance of surviving over an Hep C, patient, he/she should score 10% more on the " disease index. " With this in mind, a 25 yo smoker would be equal with a 50 yo non-smoker. But, if the 50 yo non-smoker had PSC and the 25 yo had Hep C, the liver would go to the 50 yo. This can go even deeper. Each category can have relative importance scores. If family support has little bearing, but some, it shouldn't carry as much weight as say disease, etc. I know all this might be complicated, but there are enough statistics out there to develop criteria like this. And let's face it. If the criteria were developed by medical professionals, they are more than qualified to do research, and create a systematic, objective system like this. Oops, I think I've gone over my $0.02 worth. : ) Dan > Re: NEW POLICY > > > >I think we need to address this situation with facts and not emotions. > >Please read the news release describing the PROPOSED policy changes. I > see > >nothing that states organs will be going nationally at the expense of > >regional waiting lists. It is very specific in stating that only after > the > >list of ALL local and regional recipients at all levels is exhausted will > >the organ be offered nationally. This is a supply and demand situation > >and, unfortunately the demand exceeds the supply...and probably always > >will. Where is it stated that PSC patients cannot be a priority 1? Have > >never seen that. What are the national statistics for transplantation of > >the variouos priority levels? Seems like there is considerable diversity > >in what transplant-eligible patients are being told. > > > >I understand the frustration over folks who have " done " something to > damage > >their livers perhaps getting ahead of us who are " innocent victims " of > >chronic liver disease, however, I think we collectively will get further > >with this with an informed approach versus raw emotion. > > > >I further realize that this forum is for us to get our feelings heard by > >others who are experiencing the same frustrations and misunderstandings > >that we come across every day...this is good. My only caution is that we > >present our case in the most informed manner possible when we are > >discussing our issues outside the support group. > > > >Darnell > > > >At 10:27 AM 6/28/99 -0400, you wrote: > >>I just called UNOS, and told them of our concern. I am really not happy > with > >>my discussion with them. I was told that the new policy would effect 1% > of > >>the population awaiting liver transplants, over the next 5 years. > >>Unfortunately, the 1% that it will effect is patients with disease like > ours. > >> The chronic liver disease patients. Maybe I'm wrong about this, but, > seeing > >>as how we can never get to a status 1, and the livers will go to status > 1 > >>patients first, doesn't this mean that our chances of getting a new > liver > are > >>greatly decreased? I told the man that I spoke to how unfair I thought > it > >>was. We did NOTHING to cause our disease, and we fight it daily for > many > >>years. Living with all the horrible side effects for all those years, > then, > >>when it comes time for transplant...we may not get one???? I think I > may > >>call the man that did my article in the local newspaper, and see if he > will > >>do a story on this. What does everyone else think? I think we should > fight > >>this all the way!!!! > >>Love, > >> > >> > >>------------------------------------------------------------------------ > >>Listen to Britany spears and more top artisits > >>now at audiohighway.com! > >>http://clickhere./click/395 > >> > >> > >>eGroups.com home: /group/ > >> - Simplifying group communications > >> > >> > >> > > > > > > > >------------------------------------------------------------------------ > >FreeShop is the #1 place for free and trial offers and great deals! > >Try something new and find out how you could win two round-trip tickets > >anywhere in the U.S.! http://clickhere./click/368 > > > > > >eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > ------------------------------------------------------------------------ > eGroups Spotlight: > " Lucid Dreaming " - Tips, techniques, and discussion of any > topic related to lucid dreaming. > http://clickhere./click/112 > > > > 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 June 28, 1999 Report Share Posted June 28, 1999 ...call me stupid but just who make up the " chronic liver disease patients " ? Any one with a liver disease? I'm sorry but I'm really reacting to all of this. Lynn NEW POLICY >I just called UNOS, and told them of our concern. I am really not happy with >my discussion with them. I was told that the new policy would effect 1% of >the population awaiting liver transplants, over the next 5 years. >Unfortunately, the 1% that it will effect is patients with disease like ours. > The chronic liver disease patients. Maybe I'm wrong about this, but, seeing >as how we can never get to a status 1, and the livers will go to status 1 >patients first, doesn't this mean that our chances of getting a new liver are >greatly decreased? I told the man that I spoke to how unfair I thought it >was. We did NOTHING to cause our disease, and we fight it daily for many >years. Living with all the horrible side effects for all those years, then, >when it comes time for transplant...we may not get one???? I think I may >call the man that did my article in the local newspaper, and see if he will >do a story on this. What does everyone else think? I think we should fight >this all the way!!!! >Love, > > >------------------------------------------------------------------------ >Listen to Britany spears and more top artisits >now at audiohighway.com! >http://clickhere./click/395 > > >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 June 28, 1999 Report Share Posted June 28, 1999 Thanks Tim, Since it is so late tonight and I don't feel good, I am going to print out your messages and send them to my son and my docs! Can't wait to read them!! Hugs, Biddy' Re: NEW POLICY >Darnell wrote: > >> . . . Where is it stated that PSC patients cannot be a priority 1? Have >> never seen that. >As in my previous post, status 1 must have liver failure within 8 weeks of the first symptoms and the absence of pre-existing liver disease is critical to the diagnosis. This pretty much excludes anyone under treatment for PSC. I'm not sure if an untreated PSC patient (if one waited that long) who whet into liver failure could get listed as status 1 or not. > >> What are the national statistics for transplantation of >> the variouos priority levels? >If all those who died while waiting at status 1 in 1997 had received a transplant, the percentage of transplants going to status 1 would have increased from 18.0% to 21.5%. > >See the following sites for the data: > >Waiting List Status at Transplant >http://www.unos.org/Data/anrpt98/AR98_TABLE22_09_LI.HTM > >Ending Medical Urgency Status (At Death) >http://www.unos.org/Data/anrpt98/ar98_table60_03_li.htm > >Other interesting statistics: > >Patient Survival Rates at Three Months and at One, Three and Five Years >http://www.unos.org/Data/anrpt98/ar98_table33_07_li.htm > >Recipient Description at Time of Transplant >http://www.unos.org/Data/anrpt98/ar98_table22_07_li.htm > >Tim > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and find out how you could win two round-trip tickets >anywhere in the U.S.! http://clickhere./click/368 > > >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 June 28, 1999 Report Share Posted June 28, 1999 , Go Girl! Yes! And thanks for calling UNOS. WYBEAR21@... wrote: > I just called UNOS, and told them of our concern. I am really not happy with > my discussion with them. I was told that the new policy would effect 1% of > the population awaiting liver transplants, over the next 5 years. > Unfortunately, the 1% that it will effect is patients with disease like ours. > The chronic liver disease patients. Maybe I'm wrong about this, but, seeing > as how we can never get to a status 1, and the livers will go to status 1 > patients first, doesn't this mean that our chances of getting a new liver are > greatly decreased? I told the man that I spoke to how unfair I thought it > was. We did NOTHING to cause our disease, and we fight it daily for many > years. Living with all the horrible side effects for all those years, then, > when it comes time for transplant...we may not get one???? I think I may > call the man that did my article in the local newspaper, and see if he will > do a story on this. What does everyone else think? I think we should fight > this all the way!!!! > Love, > > > ------------------------------------------------------------------------ > Listen to Britany spears and more top artisits > now at audiohighway.com! > http://clickhere./click/395 > > 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 June 28, 1999 Report Share Posted June 28, 1999 Biddy -- Like I said, I think smokers should be treated just like everybody else. It was just part of the example. I hope I didn't offend you. Re: NEW POLICY >> >> >>>I think we need to address this situation with facts and not emotions. >>>Please read the news release describing the PROPOSED policy changes. I >see >>>nothing that states organs will be going nationally at the expense of >>>regional waiting lists. It is very specific in stating that only after >the >>>list of ALL local and regional recipients at all levels is exhausted will >>>the organ be offered nationally. This is a supply and demand situation >>>and, unfortunately the demand exceeds the supply...and probably always >>>will. Where is it stated that PSC patients cannot be a priority 1? Have >>>never seen that. What are the national statistics for transplantation of >>>the variouos priority levels? Seems like there is considerable diversity >>>in what transplant-eligible patients are being told. >>> >>>I understand the frustration over folks who have " done " something to >damage >>>their livers perhaps getting ahead of us who are " innocent victims " of >>>chronic liver disease, however, I think we collectively will get further >>>with this with an informed approach versus raw emotion. >>> >>>I further realize that this forum is for us to get our feelings heard by >>>others who are experiencing the same frustrations and misunderstandings >>>that we come across every day...this is good. My only caution is that we >>>present our case in the most informed manner possible when we are >>>discussing our issues outside the support group. >>> >>>Darnell >>> >>>At 10:27 AM 6/28/99 -0400, you wrote: >>>>I just called UNOS, and told them of our concern. I am really not happy >>with >>>>my discussion with them. I was told that the new policy would effect 1% >>of >>>>the population awaiting liver transplants, over the next 5 years. >>>>Unfortunately, the 1% that it will effect is patients with disease like >>ours. >>>> The chronic liver disease patients. Maybe I'm wrong about this, but, >>seeing >>>>as how we can never get to a status 1, and the livers will go to status 1 >>>>patients first, doesn't this mean that our chances of getting a new liver >>are >>>>greatly decreased? I told the man that I spoke to how unfair I thought >it >>>>was. We did NOTHING to cause our disease, and we fight it daily for many >>>>years. Living with all the horrible side effects for all those years, >>then, >>>>when it comes time for transplant...we may not get one???? I think I may >>>>call the man that did my article in the local newspaper, and see if he >>will >>>>do a story on this. What does everyone else think? I think we should >>fight >>>>this all the way!!!! >>>>Love, >>>> >>>> >>>>------------------------------------------------------------------------ >>>>Listen to Britany spears and more top artisits >>>>now at audiohighway.com! >>>>http://clickhere./click/395 >>>> >>>> >>>>eGroups.com home: /group/ >>>> - Simplifying group communications >>>> >>>> >>>> >>> >>> >>> >>>------------------------------------------------------------------------ >>>FreeShop is the #1 place for free and trial offers and great deals! >>>Try something new and find out how you could win two round-trip tickets >>>anywhere in the U.S.! http://clickhere./click/368 >>> >>> >>>eGroups.com home: /group/ >>> - Simplifying group communications >>> >>> >>> >>> >> >> >>------------------------------------------------------------------------ >>eGroups Spotlight: >> " Lucid Dreaming " - Tips, techniques, and discussion of any >>topic related to lucid dreaming. >>http://clickhere./click/112 >> >> >> >>eGroups.com home: /group/ >> - Simplifying group communications >> >> >> >> >> > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >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 June 29, 1999 Report Share Posted June 29, 1999 Good idea, ! WYBEAR21@... wrote: > The chronic liver disease patients are those that have had it for greater > than 6-8 weeks I believe. As I said to the guy on the phone (from UNOS), A > man that tries to kill himself by taking an overdose of tylenol is more > likely to get a transplant than what I am. I'm not saying that he shouldn't > get the transplant, I'm just saying that I have only suffered with this > disease for less than a year, and I know it can be quite miserable. To go > through many years fighting this disease only to have your life ended by > unfair policies...how is that fair????? Shouldn't we be considered also? > I was told on the phone that the people that voted on this policy was Dr's, > liver recipients, and donor families. They all voted that it seemed fair. I > just wonder...were there any PSC people that voted on it? Probably not! I > do NOT plan to just accept this...there has GOT to be a way that we can make > a change. Everyone up for voting to go public about this? > Love, > > > ------------------------------------------------------------------------ > Just Tell Us What You Want... > Respond.com - Shopping the World for You! > http://clickhere./click/390 > > 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 June 30, 1999 Report Share Posted June 30, 1999 Roy-- I wonder, however, how many level 1 recipients are in a position to be psych-screened. How would they know if toxicity due to self-inflicted poisoning, error or attempted murder when someone is that ill and has hepatic encephalopathy ? This whole thing is a huge ethical and philosophical puzzle. (Obviously, if someone had already been diagnosed as suicidal or had made repeated attempts, they would probably not be considered a good candidate) Just continuing the endless discussion..... H. Re: NEW POLICY > > > > The chronic liver disease patients are those that have had it for greater > > than 6-8 weeks I believe. As I said to the guy on the phone (from UNOS), > A > > man that tries to kill himself by taking an overdose of tylenol is more > > likely to get a transplant than what I am. I'm not saying that he > shouldn't > > get the transplant, I'm just saying that I have only suffered with this > > disease for less than a year, and I know it can be quite miserable. To go > > through many years fighting this disease only to have your life ended by > > unfair policies...how is that fair????? Shouldn't we be considered also? > > I was told on the phone that the people that voted on this policy was > Dr's, > > liver recipients, and donor families. They all voted that it seemed fair. > I > > just wonder...were there any PSC people that voted on it? Probably not! > I > > do NOT plan to just accept this...there has GOT to be a way that we can > make > > a change. Everyone up for voting to go public about this? > > Love, > > > > > > ------------------------------------------------------------------------ > > Just Tell Us What You Want... > > Respond.com - Shopping the World for You! > > http://clickhere./click/390 > > > > > > eGroups.com home: /group/ > > - Simplifying group communications > > > > > > > > > > > ------------------------------------------------------------------------ > Just Tell Us What You Want... > Respond.com - Shopping the World for You! > http://clickhere./click/390 > > > 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 June 30, 1999 Report Share Posted June 30, 1999 Dear , You could NEVER offend me! I am not and have not been thinned skin! I just was feeling so bad and I should not have read the messages! I admire all that you write -- you are a sharp cookie, as they say here! By the way everyone -- HAVE A HAPPY JULY 4TH!!! I like this holiday so much, but Halloween is my favorite! That tells you something about me! LOL A true story! Hugs, Biddy Re: NEW POLICY >>> >>> >>>>I think we need to address this situation with facts and not emotions. >>>>Please read the news release describing the PROPOSED policy changes. I >>see >>>>nothing that states organs will be going nationally at the expense of >>>>regional waiting lists. It is very specific in stating that only after >>the >>>>list of ALL local and regional recipients at all levels is exhausted will >>>>the organ be offered nationally. This is a supply and demand situation >>>>and, unfortunately the demand exceeds the supply...and probably always >>>>will. Where is it stated that PSC patients cannot be a priority 1? Have >>>>never seen that. What are the national statistics for transplantation of >>>>the variouos priority levels? Seems like there is considerable diversity >>>>in what transplant-eligible patients are being told. >>>> >>>>I understand the frustration over folks who have " done " something to >>damage >>>>their livers perhaps getting ahead of us who are " innocent victims " of >>>>chronic liver disease, however, I think we collectively will get further >>>>with this with an informed approach versus raw emotion. >>>> >>>>I further realize that this forum is for us to get our feelings heard by >>>>others who are experiencing the same frustrations and misunderstandings >>>>that we come across every day...this is good. My only caution is that we >>>>present our case in the most informed manner possible when we are >>>>discussing our issues outside the support group. >>>> >>>>Darnell >>>> >>>>At 10:27 AM 6/28/99 -0400, you wrote: >>>>>I just called UNOS, and told them of our concern. I am really not happy >>>with >>>>>my discussion with them. I was told that the new policy would effect 1% >>>of >>>>>the population awaiting liver transplants, over the next 5 years. >>>>>Unfortunately, the 1% that it will effect is patients with disease like >>>ours. >>>>> The chronic liver disease patients. Maybe I'm wrong about this, but, >>>seeing >>>>>as how we can never get to a status 1, and the livers will go to status >1 >>>>>patients first, doesn't this mean that our chances of getting a new >liver >>>are >>>>>greatly decreased? I told the man that I spoke to how unfair I thought >>it >>>>>was. We did NOTHING to cause our disease, and we fight it daily for >many >>>>>years. Living with all the horrible side effects for all those years, >>>then, >>>>>when it comes time for transplant...we may not get one???? I think I >may >>>>>call the man that did my article in the local newspaper, and see if he >>>will >>>>>do a story on this. What does everyone else think? I think we should >>>fight >>>>>this all the way!!!! >>>>>Love, >>>>> >>>>> >>>>>----------------------------------------------------------------------- - >>>>>Listen to Britany spears and more top artisits >>>>>now at audiohighway.com! >>>>>http://clickhere./click/395 >>>>> >>>>> >>>>>eGroups.com home: /group/ >>>>> - Simplifying group communications >>>>> >>>>> >>>>> >>>> >>>> >>>> >>>>------------------------------------------------------------------------ >>>>FreeShop is the #1 place for free and trial offers and great deals! >>>>Try something new and find out how you could win two round-trip tickets >>>>anywhere in the U.S.! http://clickhere./click/368 >>>> >>>> >>>>eGroups.com home: /group/ >>>> - Simplifying group communications >>>> >>>> >>>> >>>> >>> >>> >>>------------------------------------------------------------------------ >>>eGroups Spotlight: >>> " Lucid Dreaming " - Tips, techniques, and discussion of any >>>topic related to lucid dreaming. >>>http://clickhere./click/112 >>> >>> >>> >>>eGroups.com home: /group/ >>> - Simplifying group communications >>> >>> >>> >>> >>> >> >> >>------------------------------------------------------------------------ >>FreeShop is the #1 place for free and trial offers and great deals! >>Try something new and discover more ways to save! >>http://clickhere./click/381 >> >> >> >>eGroups.com home: /group/ >> - Simplifying group communications >> >> >> >> > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >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 June 30, 1999 Report Share Posted June 30, 1999 -- I'm ready to go public & do whatever to make people aware of how unfair this new policy is and how it discriminates agst chronic patients. To me a person who has a wk or less to live should be given the same opportunity to have a tx as the next person -- no matter how they got to that point--whether it's chronic or a sudden illness--i.e., mushroom. What can we do? Let's DO IT NOW while it's still fresh in everyone's mind. I see my dr 7/13 & will ask him also. Laurie (I wish I could read all the e-mails now about this, but I'm really beat and have to go back and lie down again. I'll catch up soon, though.) ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 1999 Report Share Posted June 30, 1999 I'm with you, & Laurie. Oceandrmer@... wrote: > -- > I'm ready to go public & do whatever to make people aware of how unfair this > new policy is and how it discriminates agst chronic patients. To me a person > who has a wk or less to live should be given the same opportunity to have a > tx as the next person -- no matter how they got to that point--whether it's > chronic or a sudden illness--i.e., mushroom. What can we do? Let's DO IT > NOW while it's still fresh in everyone's mind. > I see my dr 7/13 & will ask him also. > > Laurie > > (I wish I could read all the e-mails now about this, but I'm really beat and > have to go back and lie down again. I'll catch up soon, though.) > > ------------------------------------------------------------------------ > FreeShop is the #1 place for free and trial offers and great deals! > Try something new and find out how you could win two round-trip tickets > anywhere in the U.S.! http://clickhere./click/368 > > 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 June 30, 1999 Report Share Posted June 30, 1999 Someone please, please answer me back asap what UNOS is? Thank you so much. I was trying to think of UNOS, now I can't explain it to my son. Hugs, Biddy Re: NEW POLICY >>>> >>>> >>>>>I think we need to address this situation with facts and not emotions. >>>>>Please read the news release describing the PROPOSED policy changes. I >>>see >>>>>nothing that states organs will be going nationally at the expense of >>>>>regional waiting lists. It is very specific in stating that only after >>>the >>>>>list of ALL local and regional recipients at all levels is exhausted >will >>>>>the organ be offered nationally. This is a supply and demand situation >>>>>and, unfortunately the demand exceeds the supply...and probably always >>>>>will. Where is it stated that PSC patients cannot be a priority 1? >Have >>>>>never seen that. What are the national statistics for transplantation >of >>>>>the variouos priority levels? Seems like there is considerable >diversity >>>>>in what transplant-eligible patients are being told. >>>>> >>>>>I understand the frustration over folks who have " done " something to >>>damage >>>>>their livers perhaps getting ahead of us who are " innocent victims " of >>>>>chronic liver disease, however, I think we collectively will get further >>>>>with this with an informed approach versus raw emotion. >>>>> >>>>>I further realize that this forum is for us to get our feelings heard by >>>>>others who are experiencing the same frustrations and misunderstandings >>>>>that we come across every day...this is good. My only caution is that >we >>>>>present our case in the most informed manner possible when we are >>>>>discussing our issues outside the support group. >>>>> >>>>>Darnell >>>>> >>>>>At 10:27 AM 6/28/99 -0400, you wrote: >>>>>>I just called UNOS, and told them of our concern. I am really not >happy >>>>with >>>>>>my discussion with them. I was told that the new policy would effect >1% >>>>of >>>>>>the population awaiting liver transplants, over the next 5 years. >>>>>>Unfortunately, the 1% that it will effect is patients with disease like >>>>ours. >>>>>> The chronic liver disease patients. Maybe I'm wrong about this, but, >>>>seeing >>>>>>as how we can never get to a status 1, and the livers will go to status >>1 >>>>>>patients first, doesn't this mean that our chances of getting a new >>liver >>>>are >>>>>>greatly decreased? I told the man that I spoke to how unfair I thought >>>it >>>>>>was. We did NOTHING to cause our disease, and we fight it daily for >>many >>>>>>years. Living with all the horrible side effects for all those years, >>>>then, >>>>>>when it comes time for transplant...we may not get one???? I think I >>may >>>>>>call the man that did my article in the local newspaper, and see if he >>>>will >>>>>>do a story on this. What does everyone else think? I think we should >>>>fight >>>>>>this all the way!!!! >>>>>>Love, >>>>>> >>>>>> >>>>>>---------------------------------------------------------------------- - >- >>>>>>Listen to Britany spears and more top artisits >>>>>>now at audiohighway.com! >>>>>>http://clickhere./click/395 >>>>>> >>>>>> >>>>>>eGroups.com home: /group/ >>>>>> - Simplifying group communications >>>>>> >>>>>> >>>>>> >>>>> >>>>> >>>>> >>>>>----------------------------------------------------------------------- - >>>>>FreeShop is the #1 place for free and trial offers and great deals! >>>>>Try something new and find out how you could win two round-trip tickets >>>>>anywhere in the U.S.! http://clickhere./click/368 >>>>> >>>>> >>>>>eGroups.com home: /group/ >>>>> - Simplifying group communications >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>>>------------------------------------------------------------------------ >>>>eGroups Spotlight: >>>> " Lucid Dreaming " - Tips, techniques, and discussion of any >>>>topic related to lucid dreaming. >>>>http://clickhere./click/112 >>>> >>>> >>>> >>>>eGroups.com home: /group/ >>>> - Simplifying group communications >>>> >>>> >>>> >>>> >>>> >>> >>> >>>------------------------------------------------------------------------ >>>FreeShop is the #1 place for free and trial offers and great deals! >>>Try something new and discover more ways to save! >>>http://clickhere./click/381 >>> >>> >>> >>>eGroups.com home: /group/ >>> - Simplifying group communications >>> >>> >>> >>> >> >> >>------------------------------------------------------------------------ >>FreeShop is the #1 place for free and trial offers and great deals! >>Try something new and discover more ways to save! >>http://clickhere./click/381 >> >> >> >>eGroups.com home: /group/ >> - Simplifying group communications >> >> >> >> >> > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >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 June 30, 1999 Report Share Posted June 30, 1999 Biddy, Probably not as quick as you need it, but UNOS stands for United Network for Organ Sharing. Their web page is at http://www.unos.org/ From there you can read all about the new liver allocation policy, get transplant statistics, read the policy documents, meet patients, donor families & professionals, take a introductory course to the patient experience and find answers to the most frequently asked questions. Tim --- Biddy Santon wrote: > Someone please, please answer me back asap what UNOS is? > Thank you so much. > I was trying to think of UNOS, now I can't explain it to > my son. > Hugs, > Biddy > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 Biddy, go to www.unos.org it will explain all about it. love, ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 1999 Report Share Posted July 1, 1999 -- I'm a couple days delayed in e-mail & just saw your msg - I said the same thing a few minutes ago in replying to an earlier one of yours. Looks like we're thinking alike. Let's get planning this and go for it! Talk at you later on this. (Bed time.) Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Dan-- You've given a lot of thought to your " disease index. " You should write it to UNOS and others and get them to look at alternative ways. On another way of standing - look at what all this is becoming - a tug-of-war to live, so to speak. It's sad, isn't it? We've got to get the word out so that everyone has a chance to live. At times it almost seems insurmountable. BUT we can't get down and we've got to do SOMETHING. At least let the public know what is really going on. The way the article read on abcnews.com it sounded pretty much equal until you got to the mid/bottom of the article where it came right out & said that the new policy doesn't help a chronic patient to get a tx. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 1999 Report Share Posted July 2, 1999 Laurie, I have been grappling with the idea that if I get a liver, someone else doesn't. It makes me wonder why I should have a second chance at life and not someone else. I know where I'm going when I die. Maybe someone who doesn't, might need more time to get there too. I'm glad I'm in a very early stage. Don't have to worry about that now. Dan ---------- From: Oceandrmer@... To: egroups Subject: Re: NEW POLICY Date: Friday, July 02, 1999 8:05PM Dan-- You've given a lot of thought to your " disease index. " You should write it to UNOS and others and get them to look at alternative ways. On another way of standing - look at what all this is becoming - a tug-of-war to live, so to speak. It's sad, isn't it? We've got to get the word out so that everyone has a chance to live. At times it almost seems insurmountable. BUT we can't get down and we've got to do SOMETHING. At least let the public know what is really going on. The way the article read on abcnews.com it sounded pretty much equal until you got to the mid/bottom of the article where it came right out & said that the new policy doesn't help a chronic patient to get a tx. Laurie ------------------------------------------------------------------------ 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 3, 1999 Report Share Posted July 3, 1999 Dan-- It does cause one to ponder. The way I figure it, if I put it in God's hands (and leave it there -- don't take the worry back), then what happens is His will. It's amazing after saying a prayer to God to take all of this PSC related problems and place it in His hands how a peace comes over me. But, then something happens or I start feeling worse & the worry comes right back. In the end, His will be done. I figure if I can make a difference in the policy, or in public awareness or make a difference in some way, then my life has been purposeful. Since you are in the early stage, let me share something w/you I've just started thinking about lately. Since I've been fighting UC for 21 yrs now & PSC for 12 yrs & liver-related problems before it was diagnosed as PSC, I look back and think that if I had known back then that I would still be alive this many yrs later & w/o a tx, I wouldn't have wasted so much time on worrying about the future and enjoyed life more as it came. Maybe my experience in that regard can help you a little. Take Care. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 1999 Report Share Posted July 5, 1999 , I went to the website you sent me -- UNOS -- and I cannot find where we will eventually not be eligible to receive a liver. I guess my mind just is about at the end -- I used to be fairly intelligent, but that is now gone. Would you please find where it says about us and our eligibility, mark it and send it to me? My hubby has read this and changed some of the things I could not say. Thank you! Biddy Re: NEW POLICY >Biddy, > go to www.unos.org >it will explain all about it. >love, > > >------------------------------------------------------------------------ >FreeShop is the #1 place for free and trial offers and great deals! >Try something new and discover more ways to save! >http://clickhere./click/381 > > > >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 5, 1999 Report Share Posted July 5, 1999 ! Thanks for giving me the e-mail address of UNOS. I went there and therewas all of this info -- tons of it!! The only thing I couldn't do, however,is find in all of that stuff where it states that " chronic liver sufferers " won't be eligible for liver transplantation. I just wondered when this wouldhappen. First it was the alcoholics and drug users because they usually go backto drinking and using drugs and mess up a very good liver. That is probablywhat they are thinking about us -- we don't know what has caused our diseaseand if they gave us a new one, maybe we would mess up a good liver. Andsince livers are so rare, I think they are being fair. I read that it willreally help the children get the livers they need and for people who haveconfirmed diagnosis -- they will get a liver also. If you can find me the place where it says we won't be eligible, pleasemark that part and send it to me ASAP. I am leaving Thursday morning earlyto visit my son and he wants to know more about this. (Remember he is in hislast year of residency)! The more we can help the new docs coming on board,the more they will be able to help us. Thanks Re: NEW POLICY>Biddy,> go to www.unos.org>it will explain all about it.>love,>>>------------------------------------------------------------------------>FreeShop is the #1 place for free and trial offers and great deals!>Try something new and discover more ways to save!>http://clickhere./click/381>>>>eGroups.com home: /group/> - Simplifying group communications>>>>> eGroups.com home: /group/ www. - 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 Biddy, Right now I am having a hard time getting onto the web. I will try to do it after everything is fixed, but if I forget, please remind me. Love, ------------------------------------------------------------------------ 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 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. ------------------------------------------------------------------------ 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 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 ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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