Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 - Where in Northern Calif are you located? Soloway has organized a PSC group - which actually meets this Saturday at her home in Sacramento. I'll try to forward your message to her for more information. If I can't feel free to email me directly at: sjhatch@... Joanne H Ca -----Original Message-----From: [mailto: ]On Behalf Of HanleySent: Wednesday, March 05, 2008 11:22 PMTo: Subject: Northern California Hello All, I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. I do ask this group questions, but I think that since I am newly diagnosed, I am afraid that not having a dr. that is knowledgeable is going to make it hard for me to really understand what I need to do and it is crutial that I do what is best now, in the beginning so that I can prolong my life if that is at all possible. Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? Well wishes to all, and keep the faith. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 - Where in Northern Calif are you located? Soloway has organized a PSC group - which actually meets this Saturday at her home in Sacramento. I'll try to forward your message to her for more information. If I can't feel free to email me directly at: sjhatch@... Joanne H Ca -----Original Message-----From: [mailto: ]On Behalf Of HanleySent: Wednesday, March 05, 2008 11:22 PMTo: Subject: Northern California Hello All, I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. I do ask this group questions, but I think that since I am newly diagnosed, I am afraid that not having a dr. that is knowledgeable is going to make it hard for me to really understand what I need to do and it is crutial that I do what is best now, in the beginning so that I can prolong my life if that is at all possible. Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? Well wishes to all, and keep the faith. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 - Where in Northern Calif are you located? Soloway has organized a PSC group - which actually meets this Saturday at her home in Sacramento. I'll try to forward your message to her for more information. If I can't feel free to email me directly at: sjhatch@... Joanne H Ca -----Original Message-----From: [mailto: ]On Behalf Of HanleySent: Wednesday, March 05, 2008 11:22 PMTo: Subject: Northern California Hello All, I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. I do ask this group questions, but I think that since I am newly diagnosed, I am afraid that not having a dr. that is knowledgeable is going to make it hard for me to really understand what I need to do and it is crutial that I do what is best now, in the beginning so that I can prolong my life if that is at all possible. Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? Well wishes to all, and keep the faith. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Welcome to the frustation of PSC there maybe some docs that have more experience with PSC than others, but most do not understand PSC. My local doc has treated one other pt during his time as a doc and there are no other docs in the area that have treated anyone. I will say this for my doc. He has worked with the hepatologist that he referred me to at Baylor (6 hrs away) with other pts and he personally called her and discussed PSC and has done an excellent job of building a relationship with her and my transplant nurse. This group will be able to answer most likely be your best source for answering questions are giving you ideas of what to ask your doctor. PSC 5/07 Listed > > Hello All, > > I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. I do ask this group questions, but I think that since I am newly diagnosed, I am afraid that not having a dr. that is knowledgeable is going to make it hard for me to really understand what I need to do and it is crutial that I do what is best now, in the beginning so that I can prolong my life if that is at all possible. > > Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? > > Well wishes to all, and keep the faith. > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Welcome to the frustation of PSC there maybe some docs that have more experience with PSC than others, but most do not understand PSC. My local doc has treated one other pt during his time as a doc and there are no other docs in the area that have treated anyone. I will say this for my doc. He has worked with the hepatologist that he referred me to at Baylor (6 hrs away) with other pts and he personally called her and discussed PSC and has done an excellent job of building a relationship with her and my transplant nurse. This group will be able to answer most likely be your best source for answering questions are giving you ideas of what to ask your doctor. PSC 5/07 Listed > > Hello All, > > I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. I do ask this group questions, but I think that since I am newly diagnosed, I am afraid that not having a dr. that is knowledgeable is going to make it hard for me to really understand what I need to do and it is crutial that I do what is best now, in the beginning so that I can prolong my life if that is at all possible. > > Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? > > Well wishes to all, and keep the faith. > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 , I would have your gastro doctor at Kaiser refer you to the Kaiser Hepatologist doctor as soon as possible. Here in So. Cal., all the Kaiser Hepatologists are at Kaiser Sunset, the flagship hospital. So you may need to go to a special Kaiser facility to see a hepatologist. Marie To: From: heartrn45@...Date: Fri, 7 Mar 2008 02:20:23 +0000Subject: Re: Northern California Connect and share in new ways with Windows Live. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hello ; If has not already done so, I might recommend Dr. Bowlus at U.C, , Sacramento, CA. He's very knowledgeable about PSC, and has collaborated with the Scandinavian PSC researchers. He is currently participating in the STOPSC registry. Here are a couple of his recent papers on PSC: Bowlus CL, Karlsen TH, Broomé U, Thorsby E, Vatn M, Schrumpf E, Lie BA, Boberg KM (2006) Analysis of MAdCAM-1 and ICAM-1 polymorphisms in 365 Scandinavian patients with primary sclerosing cholangitis. J Hepatol. 45: 704-710. http://www.ncbi.nlm.nih.gov/pubmed/16750586 Aoki CA, Dawson K, Kenny TP, Gershwin ME, Bowlus CL (2006) Gene expression by PBMC in primary sclerosing cholangitis: evidence for dysregulation of immune mediated genes. Clin Dev Immunol. 13: 265- 271. http://www.ncbi.nlm.nih.gov/pubmed/17162367 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 March 6, 2008 Report Share Posted March 6, 2008 Hello ; If has not already done so, I might recommend Dr. Bowlus at U.C, , Sacramento, CA. He's very knowledgeable about PSC, and has collaborated with the Scandinavian PSC researchers. He is currently participating in the STOPSC registry. Here are a couple of his recent papers on PSC: Bowlus CL, Karlsen TH, Broomé U, Thorsby E, Vatn M, Schrumpf E, Lie BA, Boberg KM (2006) Analysis of MAdCAM-1 and ICAM-1 polymorphisms in 365 Scandinavian patients with primary sclerosing cholangitis. J Hepatol. 45: 704-710. http://www.ncbi.nlm.nih.gov/pubmed/16750586 Aoki CA, Dawson K, Kenny TP, Gershwin ME, Bowlus CL (2006) Gene expression by PBMC in primary sclerosing cholangitis: evidence for dysregulation of immune mediated genes. Clin Dev Immunol. 13: 265- 271. http://www.ncbi.nlm.nih.gov/pubmed/17162367 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 March 6, 2008 Report Share Posted March 6, 2008 Hello ; If has not already done so, I might recommend Dr. Bowlus at U.C, , Sacramento, CA. He's very knowledgeable about PSC, and has collaborated with the Scandinavian PSC researchers. He is currently participating in the STOPSC registry. Here are a couple of his recent papers on PSC: Bowlus CL, Karlsen TH, Broomé U, Thorsby E, Vatn M, Schrumpf E, Lie BA, Boberg KM (2006) Analysis of MAdCAM-1 and ICAM-1 polymorphisms in 365 Scandinavian patients with primary sclerosing cholangitis. J Hepatol. 45: 704-710. http://www.ncbi.nlm.nih.gov/pubmed/16750586 Aoki CA, Dawson K, Kenny TP, Gershwin ME, Bowlus CL (2006) Gene expression by PBMC in primary sclerosing cholangitis: evidence for dysregulation of immune mediated genes. Clin Dev Immunol. 13: 265- 271. http://www.ncbi.nlm.nih.gov/pubmed/17162367 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 March 6, 2008 Report Share Posted March 6, 2008 Hi , As Copper asked, where in Northern California, are you? because i live over in the east bay and i have Kaiser, too. I have felt exactly what you are feeling right now, many times. And i do get frustrated a lot and thought about leaving Kaiser many times, including this year. But at the same time they do have some GI's and regular doctors, that are really good. The clinic that i go to do not have a hepatologist but they do have GI's who are knowledgebale in PSC and actually are treating PSC patients and some do even ERCP's, liver biopsies----. I tell you the truth, this site has been like an encyclopedia for me. I mean real case stories. I have collected a lot of the very useful e-mails that i do go to from time to time. So wonderful and very helpful people, really. When i first joined i have very little information on PSC although prior to that i was attending PBC conferences [begining of the 2000]where PSC was mentioned a little only and i would talk to researchers and read a lot about the disease. That is before i get to know about this group. And i do consider it a miracle and a blessing, too. , if you would like, please tell me where you live to see if i can be of any help to you. And don't despair, i am sure you will be able to find good doctors. You are absolutely right that you do need a good Gastro doctor and a hepatologist to direct you and answer your many questions, i am sure, specially that you are newly diagnosed. If the clinic where you live does not have a hepatologist, you can always try to have them refer you to an outside, hepatologist. And may be learn from PSC Partners, too. PSC/UC --- Hanley brandihanley@...> wrote: > Hello All, > > I am in Northern California, and I have Kaiser, ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hi , As Copper asked, where in Northern California, are you? because i live over in the east bay and i have Kaiser, too. I have felt exactly what you are feeling right now, many times. And i do get frustrated a lot and thought about leaving Kaiser many times, including this year. But at the same time they do have some GI's and regular doctors, that are really good. The clinic that i go to do not have a hepatologist but they do have GI's who are knowledgebale in PSC and actually are treating PSC patients and some do even ERCP's, liver biopsies----. I tell you the truth, this site has been like an encyclopedia for me. I mean real case stories. I have collected a lot of the very useful e-mails that i do go to from time to time. So wonderful and very helpful people, really. When i first joined i have very little information on PSC although prior to that i was attending PBC conferences [begining of the 2000]where PSC was mentioned a little only and i would talk to researchers and read a lot about the disease. That is before i get to know about this group. And i do consider it a miracle and a blessing, too. , if you would like, please tell me where you live to see if i can be of any help to you. And don't despair, i am sure you will be able to find good doctors. You are absolutely right that you do need a good Gastro doctor and a hepatologist to direct you and answer your many questions, i am sure, specially that you are newly diagnosed. If the clinic where you live does not have a hepatologist, you can always try to have them refer you to an outside, hepatologist. And may be learn from PSC Partners, too. PSC/UC --- Hanley brandihanley@...> wrote: > Hello All, > > I am in Northern California, and I have Kaiser, ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hi , As Copper asked, where in Northern California, are you? because i live over in the east bay and i have Kaiser, too. I have felt exactly what you are feeling right now, many times. And i do get frustrated a lot and thought about leaving Kaiser many times, including this year. But at the same time they do have some GI's and regular doctors, that are really good. The clinic that i go to do not have a hepatologist but they do have GI's who are knowledgebale in PSC and actually are treating PSC patients and some do even ERCP's, liver biopsies----. I tell you the truth, this site has been like an encyclopedia for me. I mean real case stories. I have collected a lot of the very useful e-mails that i do go to from time to time. So wonderful and very helpful people, really. When i first joined i have very little information on PSC although prior to that i was attending PBC conferences [begining of the 2000]where PSC was mentioned a little only and i would talk to researchers and read a lot about the disease. That is before i get to know about this group. And i do consider it a miracle and a blessing, too. , if you would like, please tell me where you live to see if i can be of any help to you. And don't despair, i am sure you will be able to find good doctors. You are absolutely right that you do need a good Gastro doctor and a hepatologist to direct you and answer your many questions, i am sure, specially that you are newly diagnosed. If the clinic where you live does not have a hepatologist, you can always try to have them refer you to an outside, hepatologist. And may be learn from PSC Partners, too. PSC/UC --- Hanley brandihanley@...> wrote: > Hello All, > > I am in Northern California, and I have Kaiser, ________________________________________________________________________________\ ____ Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hiya , Thank you for taking the time to talk to me. I live in Rohnert Park, California, if you aren't sure where that is, it is Sonoma County, approximately 45 minutes north of the Golden Gate Bridge. I love this site, without it I swear I would be lost. I cry a lot as it is, without this site, I would probably hide in my apartment and cry all day. Everytime I start to lose hope I jump unto the net and read about people who are alive, surviving, living. My only concern is that the dr. who is treating me is not that knowledgable, and I know part of sucess has to do with the doc. I am going to do what I need to do, be healthy, take my ursodial and so on, but I need the confidence that the doctor that I am going too is actually helping, not hurting me. I have so much yet to learn, but I thank the Lord for this group, I would be lost without it, and I appreciate each and everyone of you. B- PSC -2007; Celiac's - 2004; Attitude adjustment (positive) - the minute I found you guys/gals! Dado wrote: Hi ,As Copper asked, where in Northern California, areyou? because i live over in the east bay and i haveKaiser, too.I have felt exactly what you are feeling right now,many times. And i do get frustrated a lot and thoughtabout leaving Kaiser many times, including this year.But at the same time they do have some GI's andregular doctors, that are really good. The clinic that i go to do not have a hepatologist butthey do have GI's who are knowledgebale in PSC andactually are treating PSC patients and some do evenERCP's, liver biopsies----.I tell you the truth, this site has been like anencyclopedia for me. I mean real case stories. I havecollected a lot of the very useful e-mails that i dogo to from time to time. So wonderful and very helpfulpeople, really. When i first joined i have very littleinformation on PSC although prior to that i wasattending PBC conferences [begining of the 2000]wherePSC was mentioned a little only and i would talk toresearchers and read a lot about the disease. That isbefore i get to know about this group. And i doconsider it a miracle and a blessing, too., if you would like, please tell me where youlive to see if i can be of any help to you. And don'tdespair, i am sure you will be able to find gooddoctors. You are absolutely right that you do need agood Gastro doctor and a hepatologist to direct youand answer your many questions, i am sure, speciallythat you are newly diagnosed. If the clinic where youlive does not have a hepatologist, you can always tryto have them refer you to an outside, hepatologist.And may be learn from PSC Partners, too. PSC/UC--- Hanley <brandihanley (AT) yahoo (DOT) com> wrote:> Hello All,> > I am in Northern California, and I have Kaiser, __________________________________________________________Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 - Most insurances, including Kaiser - I think, allow for you to request a second opinion. I also know of people who travel to another Kaiser campus to see a specialist there. This happens often in the Sacramento region. If you don't mind driving, I would think there are Kaiser doc's in the Northern Calif that are knowledgeable about PSC. You may have to be somewhat assertive, but that's OK! Good luck! Joanne H (, Ca., mom of , 17, UC/PSC 2-06; JRA 98) Hello All, I am in Northern California, and I have Kaiser, I hate to say this, but I feel like my gastric dr. really doesn't understand PSC, and it makes it harder on me because I have questions and he doesn't have answers. ... . Does anyone know of a dr. in the northern California area that they would advise me have a consultation with? Well wishes to all, and keep the faith. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2008 Report Share Posted March 8, 2008 Hi Joaane, I have read your e-mail few minutes ago, after i sent mine to , last night and then went to sleep. I also read your other e-mail to . I am so glad to know that you do live in . That sounds so familiar! And that there is a group in Sacramento that sometimes do meet. That is great, although it is not in my immediate area. I live over in Antioch. I don't know if you have read my e-mail to , that i also have Kaiser. Are you with them, too? What you wrote to , is correct. But are the specialists in the Sacramento region, hepatologists or just GI's that are more into the liver and treat PSC patients, like the group in my area and the surrounding Kaiser campus? Also, do you or have you ever attended the Sacramento meetings, yourself? PSC/UC Coppercopper@...> wrote: > - > Most insurances, including Kaiser - I think, allow > for you to request a > second opinion. I also know of people who travel to > another Kaiser campus > to see a specialist there. This happens often in > the Sacramento region. If > you don't mind driving, I would think there are > Kaiser doc's in the Northern > Calif that are knowledgeable about PSC. You may > have to be somewhat > assertive, but that's OK! > > Good luck! > Joanne H > (, Ca., mom of , 17, UC/PSC 2-06; JRA 98) > > > > > > -- > Be a better friend, newshound, and know-it-all > with Yahoo! Mobile. Try it > now. > > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
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