Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 You are so welcome, . I am sure you are going to feel at much more ease not finding yourself alone but surrounded by people like us that are very supportive at the same time. I am like yourself, i do feel down and have worry and anxiety a lot of times but then, as you have mentioned i read about people who are alive and surviving as you have mentioned and so i try to keep my promises for myself to try and take one day " by faith " at a time, whenever i can. And prayers, specially do help a lot. I do know Sonoma county. I am in East Contra Costa County [far east] about 45min east of San Francisco and about 2hrs south of Sacramento. I was hoping that may be you are going to the same hospital as myself. You have absolutely right as i said before about having a knowledgeable doctor. It is very important and major. I have swithched doctors coulpe of times for that. And i have been in a continous battle about referring me to an outside, hepatologistnor one in Kaiser of a different region. They did not agree completely but i was sent for evaluation to UCSf a couple of years ago where i met with the transplant director/Professor [who i have met previously in some seminars], Dr. Bass. Also an internationally known, researcher. And so i did get to have some discussion with him, 2 or 3 times about PSC. But that was it. I was not allowed to see him on a regular basis as i have requested. Their excuse is that my GI is always in contact with him and as i mentioned earlier, couple of the clinic GI's are more into liver diseases and so the other doctors do follow and respect their opinions. Although i have found out that they do miss some of the new research information on PSC. If i were you i would switch to another GI and at the same time request unrelentlessly, about the necessity of seeing a hepatologist. You want to try and ask them to refer you to a hepatologist at some of their close by clinics or to see Dr. Bass at UCSF. And who knows your clinic over in Sonoma might agree to have you see him on a regular basis, every 3 or 6 months, whatever. The most important thing is to take charge of your health, yourself and keep fighting to not let them manage it for you. I am sure everything is going to be fine. You are very much on the right track and very soon a solution will be found. Plus, this great group. So never give hope. I will keep you in my prayers and i wish you the best of luck. Please keep us posted. PSC/UC --- Hanley brandihanley@...> wrote: Hiya , > >------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. > > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. ________________________________________________________________________________\ ____ 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 12, 2008 Report Share Posted March 12, 2008 Hi , I so much appreciate your prompt response, actually. I just wanted to let you know that i did read your e-mail. But i will write to you in full again, soon. I am having a colonoscopy tommorrow and so following the preparation, so i cannot talk with you in detail, right now. Thank you for your help. Take care. PSC/UC --- jennifer@...> wrote: > Hi Sara, > > Sorry for the delay in responding but I don't check > email everyday. > Joanne asked me to respond to you. > > There is a member of our group, , who lives in > Pleasanton, is a > Kaiser member and recently got a liver transplant at > UCSF. My > understanding is that all Kaiser North PSC patients > go to UCSF for > transplants. I would expect that Kaiser would also > authorize periodic > visits to a hepatologist at UCSF for PSC monitoring. > If not, there > must be a hepatologist at one of the Kaiser North > facilities. In fact > one of my group members, Jan, drives all the way > from Placerville for > PSC monitoring and ERCPs at the Kaiser hospital in > Sacramento. Write > me off-line and I will put you in touch with > and Jan. My email > is jennifer@.... > > Our group just had a meeting March 8. We normally > meet again in May > but Dr. Bowlus is planning a PSC meeting in > sometime in May, and > PSC Partners is also meeting in May so, we will > probably not meet in > May. Dr. Bowlus has not set the date but I will let > everyone in the > Sacramento group know the details as soon as he gets > them to me. Also, > I will post the information on this Board. > > We are all in this together so I am happy to do > whatever I can to help > you out. > > (Sacramento 2001 dx PSC and UC) > > > > > > > > I appreciate it that you are contacting , > for > > me. As i wrote to , Kaiser do not have a > > hepatologist in Contra Costa county. Also not in > some > > of the surrounding cities like Oakland, Fremont or > > Hayward, for example. But i did have a chance to > meet > > w/some researchers, including a hepatologist at > UCSF, > > couple of times, only. That is why i was > astonished > > when i heard you mentioning Kaiser in Sacramento. > That > > is very good news, by the way. They probably do in > > large cities. > > > > > > ________________________________________________________________________________\ ____ 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...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hi , I so much appreciate your prompt response, actually. I just wanted to let you know that i did read your e-mail. But i will write to you in full again, soon. I am having a colonoscopy tommorrow and so following the preparation, so i cannot talk with you in detail, right now. Thank you for your help. Take care. PSC/UC --- jennifer@...> wrote: > Hi Sara, > > Sorry for the delay in responding but I don't check > email everyday. > Joanne asked me to respond to you. > > There is a member of our group, , who lives in > Pleasanton, is a > Kaiser member and recently got a liver transplant at > UCSF. My > understanding is that all Kaiser North PSC patients > go to UCSF for > transplants. I would expect that Kaiser would also > authorize periodic > visits to a hepatologist at UCSF for PSC monitoring. > If not, there > must be a hepatologist at one of the Kaiser North > facilities. In fact > one of my group members, Jan, drives all the way > from Placerville for > PSC monitoring and ERCPs at the Kaiser hospital in > Sacramento. Write > me off-line and I will put you in touch with > and Jan. My email > is jennifer@.... > > Our group just had a meeting March 8. We normally > meet again in May > but Dr. Bowlus is planning a PSC meeting in > sometime in May, and > PSC Partners is also meeting in May so, we will > probably not meet in > May. Dr. Bowlus has not set the date but I will let > everyone in the > Sacramento group know the details as soon as he gets > them to me. Also, > I will post the information on this Board. > > We are all in this together so I am happy to do > whatever I can to help > you out. > > (Sacramento 2001 dx PSC and UC) > > > > > > > > I appreciate it that you are contacting , > for > > me. As i wrote to , Kaiser do not have a > > hepatologist in Contra Costa county. Also not in > some > > of the surrounding cities like Oakland, Fremont or > > Hayward, for example. But i did have a chance to > meet > > w/some researchers, including a hepatologist at > UCSF, > > couple of times, only. That is why i was > astonished > > when i heard you mentioning Kaiser in Sacramento. > That > > is very good news, by the way. They probably do in > > large cities. > > > > > > ________________________________________________________________________________\ ____ 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...
Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hi , I so much appreciate your prompt response, actually. I just wanted to let you know that i did read your e-mail. But i will write to you in full again, soon. I am having a colonoscopy tommorrow and so following the preparation, so i cannot talk with you in detail, right now. Thank you for your help. Take care. PSC/UC --- jennifer@...> wrote: > Hi Sara, > > Sorry for the delay in responding but I don't check > email everyday. > Joanne asked me to respond to you. > > There is a member of our group, , who lives in > Pleasanton, is a > Kaiser member and recently got a liver transplant at > UCSF. My > understanding is that all Kaiser North PSC patients > go to UCSF for > transplants. I would expect that Kaiser would also > authorize periodic > visits to a hepatologist at UCSF for PSC monitoring. > If not, there > must be a hepatologist at one of the Kaiser North > facilities. In fact > one of my group members, Jan, drives all the way > from Placerville for > PSC monitoring and ERCPs at the Kaiser hospital in > Sacramento. Write > me off-line and I will put you in touch with > and Jan. My email > is jennifer@.... > > Our group just had a meeting March 8. We normally > meet again in May > but Dr. Bowlus is planning a PSC meeting in > sometime in May, and > PSC Partners is also meeting in May so, we will > probably not meet in > May. Dr. Bowlus has not set the date but I will let > everyone in the > Sacramento group know the details as soon as he gets > them to me. Also, > I will post the information on this Board. > > We are all in this together so I am happy to do > whatever I can to help > you out. > > (Sacramento 2001 dx PSC and UC) > > > > > > > > I appreciate it that you are contacting , > for > > me. As i wrote to , Kaiser do not have a > > hepatologist in Contra Costa county. Also not in > some > > of the surrounding cities like Oakland, Fremont or > > Hayward, for example. But i did have a chance to > meet > > w/some researchers, including a hepatologist at > UCSF, > > couple of times, only. That is why i was > astonished > > when i heard you mentioning Kaiser in Sacramento. > That > > is very good news, by the way. They probably do in > > large cities. > > > > > > ________________________________________________________________________________\ ____ 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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