Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Arne, Like , who wrote " This is my first PSC loss since I joined the group " , Randy's death is the first I know about since joining the group in June of 2007. I suspect there may have been others, but dead men don't post that they have left the group. Is there any sort of follow up if someone hasn't posted for a lengthy period? Are there any statistics of how many members of this group have died and whether that death was due to PSC or some related illness? I believe that has a group that we are doing much better than that 10 to 11 years life expectancy after diagnoses you can find on the web. Ian (52 today) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts " hard bouncing " . There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Ian Cribb Arne, Like , who wrote " This is my first PSC loss since I joined the group " , Randy's death is the first I know about since joining the group in June of 2007. I suspect there may have been others, but dead men don't post that they have left the group. Is there any sort of follow up if someone hasn't posted for a lengthy period? Are there any statistics of how many members of this group have died and whether that death was due to PSC or some related illness? I believe that has a group that we are doing much better than that 10 to 11 years life expectancy after diagnoses you can find on the web. Ian (52 today) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts " hard bouncing " . There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Ian Cribb Arne, Like , who wrote " This is my first PSC loss since I joined the group " , Randy's death is the first I know about since joining the group in June of 2007. I suspect there may have been others, but dead men don't post that they have left the group. Is there any sort of follow up if someone hasn't posted for a lengthy period? Are there any statistics of how many members of this group have died and whether that death was due to PSC or some related illness? I believe that has a group that we are doing much better than that 10 to 11 years life expectancy after diagnoses you can find on the web. Ian (52 today) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts " hard bouncing " . There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Ian Cribb Arne, Like , who wrote " This is my first PSC loss since I joined the group " , Randy's death is the first I know about since joining the group in June of 2007. I suspect there may have been others, but dead men don't post that they have left the group. Is there any sort of follow up if someone hasn't posted for a lengthy period? Are there any statistics of how many members of this group have died and whether that death was due to PSC or some related illness? I believe that has a group that we are doing much better than that 10 to 11 years life expectancy after diagnoses you can find on the web. Ian (52 today) PSC 89 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Hi Ian; I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here: Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis. Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo http://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Hi Ian; I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here: Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis. Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo http://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Hi Ian; I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here: Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis. Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo http://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 , When I clicked the link you provided I was taken to the following page: http://www.gastrojournal.org/article/S0016-5085 which said " Page Not Found We're sorry, but the URL you have requested is not valid. Help us improve the site by reporting how you reached this unavailable URL. The web page you have requested for Gastroenterology is not valid. Please visit the journal online at . NOTE TO INSTITUTIONAL SUBSCRIBERS: Institutions do not have access to this site, and instead should visit the following address to access the journal online: http://www2.us.elsevierhealth.com/inst/serve?db=home & id=GAST Any questions? Contact Customer Service European Online Customer ServiceTel: +44 (0) 1865-843177Fax: +44 (0) 1865-843970E-mail: eurosupport@... North American and Rest of World Online Customer ServiceTel: (Toll Free US & Canada)Tel: (Outside US & Canada) Fax: E-mail: JournalsOnlineSupport-usa@... Online Submission SupportTel: +1 (Toll Free US & Canada)Tel: +81 3 5561 5032 (Asia & Pacific) Tel: +353 61 709 190 (Europe & Rest of the World)E-mail: support@...Website: http://epsupport.elsevier.com " The statistics I've seen on the web say I should be dead. I think the statistics are wrong, and am wondering if more up to date numbers are available. I really enjoy statistics and graphs. Ian (52) PSC 89 Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here:Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis.Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulohttp://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis.Best regards, Dave (father of (22); PSC 07/03; UC 08/03) -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 , When I clicked the link you provided I was taken to the following page: http://www.gastrojournal.org/article/S0016-5085 which said " Page Not Found We're sorry, but the URL you have requested is not valid. Help us improve the site by reporting how you reached this unavailable URL. The web page you have requested for Gastroenterology is not valid. Please visit the journal online at . NOTE TO INSTITUTIONAL SUBSCRIBERS: Institutions do not have access to this site, and instead should visit the following address to access the journal online: http://www2.us.elsevierhealth.com/inst/serve?db=home & id=GAST Any questions? Contact Customer Service European Online Customer ServiceTel: +44 (0) 1865-843177Fax: +44 (0) 1865-843970E-mail: eurosupport@... North American and Rest of World Online Customer ServiceTel: (Toll Free US & Canada)Tel: (Outside US & Canada) Fax: E-mail: JournalsOnlineSupport-usa@... Online Submission SupportTel: +1 (Toll Free US & Canada)Tel: +81 3 5561 5032 (Asia & Pacific) Tel: +353 61 709 190 (Europe & Rest of the World)E-mail: support@...Website: http://epsupport.elsevier.com " The statistics I've seen on the web say I should be dead. I think the statistics are wrong, and am wondering if more up to date numbers are available. I really enjoy statistics and graphs. Ian (52) PSC 89 Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here:Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis.Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulohttp://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis.Best regards, Dave (father of (22); PSC 07/03; UC 08/03) -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 , When I clicked the link you provided I was taken to the following page: http://www.gastrojournal.org/article/S0016-5085 which said " Page Not Found We're sorry, but the URL you have requested is not valid. Help us improve the site by reporting how you reached this unavailable URL. The web page you have requested for Gastroenterology is not valid. Please visit the journal online at . NOTE TO INSTITUTIONAL SUBSCRIBERS: Institutions do not have access to this site, and instead should visit the following address to access the journal online: http://www2.us.elsevierhealth.com/inst/serve?db=home & id=GAST Any questions? Contact Customer Service European Online Customer ServiceTel: +44 (0) 1865-843177Fax: +44 (0) 1865-843970E-mail: eurosupport@... North American and Rest of World Online Customer ServiceTel: (Toll Free US & Canada)Tel: (Outside US & Canada) Fax: E-mail: JournalsOnlineSupport-usa@... Online Submission SupportTel: +1 (Toll Free US & Canada)Tel: +81 3 5561 5032 (Asia & Pacific) Tel: +353 61 709 190 (Europe & Rest of the World)E-mail: support@...Website: http://epsupport.elsevier.com " The statistics I've seen on the web say I should be dead. I think the statistics are wrong, and am wondering if more up to date numbers are available. I really enjoy statistics and graphs. Ian (52) PSC 89 Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. While I understand your reasoning for wanting to obtain statistics on group members who have lost the battle, I honestly don't think that we could do as good a job of keeping and reporting these kind of statistics as the doctors who are following the patients. For me the most telling statistics will always be those that appear in the medical journals. The most recent ones can be found here:Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) The Natural History of Small-Duct Primary Sclerosing Cholangitis.Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulohttp://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract Having said this, I should add that when my son was diagnosed with PSC one of the first things he said about the doctors who were " treating " him was ... " they are not really interested in me as a person, they just want me as a data point on one of their PSC graphs! " Statistics can be awfully impersonal at times! Let us please try to remember each member who has passed as an individual, not as a statistic! While Shauna was brilliant at statistics, I am sure she would like to be remembered for the help she gave to others on this message board rather than how long she lived after PSC diagnosis.Best regards, Dave (father of (22); PSC 07/03; UC 08/03) -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Sorry Ian; Try: http://journals.elsevierhealth.com/periodicals/ygast/current and then look for the Abstract of the article at pages 975-980. There are other interesting articles in this issue too, e.g.: Regulation of Gut Inflammation and Th17 Cell Response by Interleukin- 21 (pages 1038-1048) Severe Bile Salt Export Pump Deficiency: 82 Different ABCB11 Mutations in 109 Families (pages 1203-1214) Dave R. > > > > Hi Ian; > > > > I am terribly sorry for Randy's loss, and my heart goes out to > > Barbara in her time of grief and loss. It is always very upsetting to > > me when I hear of another death from this dreadful disease. > > > > While I understand your reasoning for wanting to obtain statistics on > > group members who have lost the battle, I honestly don't think that > > we could do as good a job of keeping and reporting these kind of > > statistics as the doctors who are following the patients. For me the > > most telling statistics will always be those that appear in the > > medical journals. The most recent ones can be found here: > > > > Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) > > The Natural History of Small-Duct Primary Sclerosing Cholangitis. > > Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, > > Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo > > > > http://www.gastrojournal.org/article/S0016-5085(08)00116- 9/abstract > > > > Having said this, I should add that when my son was diagnosed with > > PSC one of the first things he said about the doctors who > > were " treating " him was ... " they are not really interested in me as > > a person, they just want me as a data point on one of their PSC > > graphs! " Statistics can be awfully impersonal at times! > > > > Let us please try to remember each member who has passed as an > > individual, not as a statistic! > > > > While Shauna was brilliant at statistics, I am sure she would like to > > be remembered for the help she gave to others on this message board > > rather than how long she lived after PSC diagnosis. > > > > Best regards, > > > > Dave > > (father of (22); PSC 07/03; UC 08/03) > > > > > > > > > > -- > Ian Cribb former P.Eng. (resigned in good standing) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Sorry Ian; Try: http://journals.elsevierhealth.com/periodicals/ygast/current and then look for the Abstract of the article at pages 975-980. There are other interesting articles in this issue too, e.g.: Regulation of Gut Inflammation and Th17 Cell Response by Interleukin- 21 (pages 1038-1048) Severe Bile Salt Export Pump Deficiency: 82 Different ABCB11 Mutations in 109 Families (pages 1203-1214) Dave R. > > > > Hi Ian; > > > > I am terribly sorry for Randy's loss, and my heart goes out to > > Barbara in her time of grief and loss. It is always very upsetting to > > me when I hear of another death from this dreadful disease. > > > > While I understand your reasoning for wanting to obtain statistics on > > group members who have lost the battle, I honestly don't think that > > we could do as good a job of keeping and reporting these kind of > > statistics as the doctors who are following the patients. For me the > > most telling statistics will always be those that appear in the > > medical journals. The most recent ones can be found here: > > > > Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) > > The Natural History of Small-Duct Primary Sclerosing Cholangitis. > > Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, > > Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo > > > > http://www.gastrojournal.org/article/S0016-5085(08)00116- 9/abstract > > > > Having said this, I should add that when my son was diagnosed with > > PSC one of the first things he said about the doctors who > > were " treating " him was ... " they are not really interested in me as > > a person, they just want me as a data point on one of their PSC > > graphs! " Statistics can be awfully impersonal at times! > > > > Let us please try to remember each member who has passed as an > > individual, not as a statistic! > > > > While Shauna was brilliant at statistics, I am sure she would like to > > be remembered for the help she gave to others on this message board > > rather than how long she lived after PSC diagnosis. > > > > Best regards, > > > > Dave > > (father of (22); PSC 07/03; UC 08/03) > > > > > > > > > > -- > Ian Cribb former P.Eng. (resigned in good standing) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Sorry Ian; Try: http://journals.elsevierhealth.com/periodicals/ygast/current and then look for the Abstract of the article at pages 975-980. There are other interesting articles in this issue too, e.g.: Regulation of Gut Inflammation and Th17 Cell Response by Interleukin- 21 (pages 1038-1048) Severe Bile Salt Export Pump Deficiency: 82 Different ABCB11 Mutations in 109 Families (pages 1203-1214) Dave R. > > > > Hi Ian; > > > > I am terribly sorry for Randy's loss, and my heart goes out to > > Barbara in her time of grief and loss. It is always very upsetting to > > me when I hear of another death from this dreadful disease. > > > > While I understand your reasoning for wanting to obtain statistics on > > group members who have lost the battle, I honestly don't think that > > we could do as good a job of keeping and reporting these kind of > > statistics as the doctors who are following the patients. For me the > > most telling statistics will always be those that appear in the > > medical journals. The most recent ones can be found here: > > > > Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) > > The Natural History of Small-Duct Primary Sclerosing Cholangitis. > > Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren, > > Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo > > > > http://www.gastrojournal.org/article/S0016-5085(08)00116- 9/abstract > > > > Having said this, I should add that when my son was diagnosed with > > PSC one of the first things he said about the doctors who > > were " treating " him was ... " they are not really interested in me as > > a person, they just want me as a data point on one of their PSC > > graphs! " Statistics can be awfully impersonal at times! > > > > Let us please try to remember each member who has passed as an > > individual, not as a statistic! > > > > While Shauna was brilliant at statistics, I am sure she would like to > > be remembered for the help she gave to others on this message board > > rather than how long she lived after PSC diagnosis. > > > > Best regards, > > > > Dave > > (father of (22); PSC 07/03; UC 08/03) > > > > > > > > > > -- > Ian Cribb former P.Eng. (resigned in good standing) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 , That link works alot better, but they want over thirty dollars to read the full article. The numbers I saw in the abstact, although better then the numbers I read earlier, still say I should be dead. And I know there are others in this group who have had PSC longer. Are some of our members diing off much younger that we are not aware of?? Ian (52) PSC 89 Sorry Ian;Try:http://journals.elsevierhealth.com/periodicals/ygast/current and then look for the Abstract of the article at pages 975-980.There are other interesting articles in this issue too, e.g.:Regulation of Gut Inflammation and Th17 Cell Response by Interleukin-21 (pages 1038-1048) Severe Bile Salt Export Pump Deficiency: 82 Different ABCB11 Mutations in 109 Families (pages 1203-1214)Dave R.> >> > Hi Ian;> >> > I am terribly sorry for Randy's loss, and my heart goes out to > > Barbara in her time of grief and loss. It is always very upsetting to> > me when I hear of another death from this dreadful disease.> >> > While I understand your reasoning for wanting to obtain statistics on> > group members who have lost the battle, I honestly don't think that> > we could do as good a job of keeping and reporting these kind of> > statistics as the doctors who are following the patients. For me the> > most telling statistics will always be those that appear in the> > medical journals. The most recent ones can be found here:> >> > Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) > > The Natural History of Small-Duct Primary Sclerosing Cholangitis.> > Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren,> > Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo > >> > http://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract > >> > Having said this, I should add that when my son was diagnosed with> > PSC one of the first things he said about the doctors who> > were " treating " him was ... " they are not really interested in me as> > a person, they just want me as a data point on one of their PSC> > graphs! " Statistics can be awfully impersonal at times!> >> > Let us please try to remember each member who has passed as an > > individual, not as a statistic!> >> > While Shauna was brilliant at statistics, I am sure she would like to> > be remembered for the help she gave to others on this message board> > rather than how long she lived after PSC diagnosis.> >> > Best regards,> >> > Dave > > (father of (22); PSC 07/03; UC 08/03)> > > > > >> > > > -- > Ian Cribb former P.Eng. (resigned in good standing)> > -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 , That link works alot better, but they want over thirty dollars to read the full article. The numbers I saw in the abstact, although better then the numbers I read earlier, still say I should be dead. And I know there are others in this group who have had PSC longer. Are some of our members diing off much younger that we are not aware of?? Ian (52) PSC 89 Sorry Ian;Try:http://journals.elsevierhealth.com/periodicals/ygast/current and then look for the Abstract of the article at pages 975-980.There are other interesting articles in this issue too, e.g.:Regulation of Gut Inflammation and Th17 Cell Response by Interleukin-21 (pages 1038-1048) Severe Bile Salt Export Pump Deficiency: 82 Different ABCB11 Mutations in 109 Families (pages 1203-1214)Dave R.> >> > Hi Ian;> >> > I am terribly sorry for Randy's loss, and my heart goes out to > > Barbara in her time of grief and loss. It is always very upsetting to> > me when I hear of another death from this dreadful disease.> >> > While I understand your reasoning for wanting to obtain statistics on> > group members who have lost the battle, I honestly don't think that> > we could do as good a job of keeping and reporting these kind of> > statistics as the doctors who are following the patients. For me the> > most telling statistics will always be those that appear in the> > medical journals. The most recent ones can be found here:> >> > Gastroenterology Volume 134, Issue 4, Pages 975-980 (April 2008) > > The Natural History of Small-Duct Primary Sclerosing Cholangitis.> > Einar Björnsson, Rolf Olsson, Annika Bergquist, Stefan Lindgren,> > Barbara Braden, W. Chapman, Kirsten M. Boberg, Angulo > >> > http://www.gastrojournal.org/article/S0016-5085(08)00116-9/abstract > >> > Having said this, I should add that when my son was diagnosed with> > PSC one of the first things he said about the doctors who> > were " treating " him was ... " they are not really interested in me as> > a person, they just want me as a data point on one of their PSC> > graphs! " Statistics can be awfully impersonal at times!> >> > Let us please try to remember each member who has passed as an > > individual, not as a statistic!> >> > While Shauna was brilliant at statistics, I am sure she would like to> > be remembered for the help she gave to others on this message board> > rather than how long she lived after PSC diagnosis.> >> > Best regards,> >> > Dave > > (father of (22); PSC 07/03; UC 08/03)> > > > > >> > > > -- > Ian Cribb former P.Eng. (resigned in good standing)> > -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 - I agree 100% that each death is to be mourned, whether from PSC, liver failure, related cancer, or something else. I'd like to thank each family member who stays in touch with us via the PSC website; I appreciate their support, caring, being a member of this "extended family", as well as sharing their hopes for finding treatments and a cure for PSC. Please correct me if I am wrong, but is the Foundation STOPSC study going to develop additional data? No matter what, the numbers are just numbers as you said. The individuals are each special as a person and for the gifts they have brought their family, friends and co-workers. I received a note today from a family of an 84 year old that I have known, cared for and enjoyed for many years. She was an amazing woman and didn't shy away from sharing her opinion. Her memorial notice included the following: Be Good, But..... Be good, but not too good --- A little naughty, but not too naughty. Say a prayer if you feel that way. Say damn if it gives you consolation. Be kind to the world always, if possible --- Yet, if you must be unkind, smash right and left, get it over and forget it. Smile, always smile, have a smile ready --- wherever and whenever you can --- don't let even a wee bit slip past you. LIVE, ABOVE ALL THINGS, LIVE --- DON'T SIMPLY EXIST. If you are blessed enough to know what real love is --- well, then, love with all your heart, soul, and body. Live your life so that at any hour you will be able to shake hands with yourself. Try to accomplish at least one thing worthwhile each day. Then when your nights come you will be able to pull up the covers and say to yourself, "I have done my best." And to Barbara, best wishes and many thoughts for you during these hard days. Joanne H (, Ca., mom of ) Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. .. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 - I agree 100% that each death is to be mourned, whether from PSC, liver failure, related cancer, or something else. I'd like to thank each family member who stays in touch with us via the PSC website; I appreciate their support, caring, being a member of this "extended family", as well as sharing their hopes for finding treatments and a cure for PSC. Please correct me if I am wrong, but is the Foundation STOPSC study going to develop additional data? No matter what, the numbers are just numbers as you said. The individuals are each special as a person and for the gifts they have brought their family, friends and co-workers. I received a note today from a family of an 84 year old that I have known, cared for and enjoyed for many years. She was an amazing woman and didn't shy away from sharing her opinion. Her memorial notice included the following: Be Good, But..... Be good, but not too good --- A little naughty, but not too naughty. Say a prayer if you feel that way. Say damn if it gives you consolation. Be kind to the world always, if possible --- Yet, if you must be unkind, smash right and left, get it over and forget it. Smile, always smile, have a smile ready --- wherever and whenever you can --- don't let even a wee bit slip past you. LIVE, ABOVE ALL THINGS, LIVE --- DON'T SIMPLY EXIST. If you are blessed enough to know what real love is --- well, then, love with all your heart, soul, and body. Live your life so that at any hour you will be able to shake hands with yourself. Try to accomplish at least one thing worthwhile each day. Then when your nights come you will be able to pull up the covers and say to yourself, "I have done my best." And to Barbara, best wishes and many thoughts for you during these hard days. Joanne H (, Ca., mom of ) Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. .. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 - I agree 100% that each death is to be mourned, whether from PSC, liver failure, related cancer, or something else. I'd like to thank each family member who stays in touch with us via the PSC website; I appreciate their support, caring, being a member of this "extended family", as well as sharing their hopes for finding treatments and a cure for PSC. Please correct me if I am wrong, but is the Foundation STOPSC study going to develop additional data? No matter what, the numbers are just numbers as you said. The individuals are each special as a person and for the gifts they have brought their family, friends and co-workers. I received a note today from a family of an 84 year old that I have known, cared for and enjoyed for many years. She was an amazing woman and didn't shy away from sharing her opinion. Her memorial notice included the following: Be Good, But..... Be good, but not too good --- A little naughty, but not too naughty. Say a prayer if you feel that way. Say damn if it gives you consolation. Be kind to the world always, if possible --- Yet, if you must be unkind, smash right and left, get it over and forget it. Smile, always smile, have a smile ready --- wherever and whenever you can --- don't let even a wee bit slip past you. LIVE, ABOVE ALL THINGS, LIVE --- DON'T SIMPLY EXIST. If you are blessed enough to know what real love is --- well, then, love with all your heart, soul, and body. Live your life so that at any hour you will be able to shake hands with yourself. Try to accomplish at least one thing worthwhile each day. Then when your nights come you will be able to pull up the covers and say to yourself, "I have done my best." And to Barbara, best wishes and many thoughts for you during these hard days. Joanne H (, Ca., mom of ) Hi Ian;I am terribly sorry for Randy's loss, and my heart goes out to Barbara in her time of grief and loss. It is always very upsetting to me when I hear of another death from this dreadful disease. .. .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 My husband passed away in March 2007 after a hard, short battle, brief transplant listing and subsequent removal due to cancer. His CA19-9 was over 18,000 (yes you are reading that right) but in all the brushings they did they never found the cancer there. It wasn't until they drained 6 liters of fluid from his abdomen that they found cancer. This is the biggest reason I try to tell everyone, patient, family members, etc. Don't just go with the flow of what is being said to you. Ask questions, lots of them, if something doesn't feel right or seem right or being addressed properly, ask questions, make waves if you have to because it is your life or your loved ones life that you are dealing with. Writing this still brings tears to my eyes thinking about my lost love wondering if I really fought hard enough for him, or asked the right questions that might have made a difference in his care or whether he would still be here with me or not. What I do know is that he is no longer in pain and when I lost him it was because physically and emotionally he couldn't take how his life had become. When we were told that he only had a few weeks/months and to just make him comfortable I knew when I lost him in 5 days that it was his choosing to go. That is why I am also here a year later to help those not have to walk in my shoes and to hold the hands of the few who do end up walking in my shoes. We are all soul mates here. If you go to legacy.com and type in Mark O. Hettinger for a few days yet is my husbands guest book. Many of you here posted condolences and I thank you for that even though you barely knew me and my husband but your support is what was and is important. Hugs to everyone! Hettinger __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Dear ,I did not know about this site but I have signed your guest book.Thank you so much for still thinking of others at a time when it would be easy to withdraw.Your husband would be proud and please do not question yourself any longer. You did all that you could with the information you had at the time. Thank you so much for your continuing support. What a wonderful way to honor your husband by helping others.LeeMy husband passed away in March 2007 after a hard, short battle, brief transplant listing and subsequent removal due to cancer. His CA19-9 was over 18,000 (yes you are reading that right) but in all the brushings they did they never found the cancer there. It wasn't until they drained 6 liters of fluid from his abdomen that they found cancer. Writing this still brings tears to my eyes thinking about my lost love wondering if I really fought hard enough for him, or asked the right questions that might have made a difference in his care or whether he would still be here with me or not. If you go to legacy.com and type in Mark O. Hettinger for a few days yet is my husbands guest book. Many of you here posted condolences and I thank you for that even though you barely knew me and my husband but your support is what was and is important. Hugs to everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Hi, I have been a member since 1999. I rarely post but I am alive and well. Dawn from NY UC 1993 PSC 1998 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts "hard bouncing". There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Hi, I have been a member since 1999. I rarely post but I am alive and well. Dawn from NY UC 1993 PSC 1998 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts "hard bouncing". There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Hi, I have been a member since 1999. I rarely post but I am alive and well. Dawn from NY UC 1993 PSC 1998 This is a very difficult issue, as the information available to us is only what people provide. The only way we know anything about someone who doesn't post for a long time is if their email address starts "hard bouncing". There are people who have never posted that still have a valid email address - some from the very beginning of the group. I'll think about this and see what I can come up with - an interesting question. As you state, we don't know what people don't tell us. Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota Wondering what's for Dinner Tonight? Get new twists on family favorites at AOL Food. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Yeah Dawn - it is good to hear from you! Joanne H (, Ca, mom of 17, UC/PSC 2-06) Subject: Re: Arne lost statistics? Hi, I have been a member since 1999. I rarely post but I am alive and well. Dawn from NY UC 1993 PSC 1998 .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Yeah Dawn - it is good to hear from you! Joanne H (, Ca, mom of 17, UC/PSC 2-06) Subject: Re: Arne lost statistics? Hi, I have been a member since 1999. I rarely post but I am alive and well. Dawn from NY UC 1993 PSC 1998 .. Quote Link to comment Share on other sites More sharing options...
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