Re: Re: PSC Yahoo Support Group and PSC Partners Seeking a Cure

[Guest guest]

Nina,

No I haven't read Barb;s posting, I don't have time to read all postings, that is the main reason I haven't suscribed to PSC partners' newsletters (my wife feels I already spend too much time with " my people " ), but thank you for thinking of me. My main bilary tract was removed (and replaced with a section of bowel) in an operation in 1989 and my Bilirubin numbers have been very good since (not tracked before), maybe that is why.

Ian (52) PSC 89

Have to say I disagree - I think it's important that, like Dike explained, anyone that signs up for the support group gets the information, just once, that this does not automatically sign them up for the PSC Partners list. It's hard to keep track of, and I think

it's really helpful that PSC Partners sent out a mailing to distinguish the two. Don't worry, I'm sure you won't be flooded with emails or anything now - I think that was the point of Dike's email.

Meanwhile, Ian, did you read the article Barb just posted about pre-cirrhosis surgery for management of PSC? I had a little trouble getting through it but i THINK it said that Hopkins is advising non-cirrhotic PSC patients with increased levels of Bilirubin to undergo

surgery on their biliary tract? Is that right? It made me think of you because, isn't that what you had done - or am i just confused? I'm very interested in this for a number of reasons - 1) it seems to

me that your management has been really well done over the last several decade, 2) Hopkins is a really well-respected institution here in the States and that study seemed to cover an awfully long period of time and 3) because there's no evidence that my husband has yet

developed cirrhosis and I wonder if this is the kind of pro-active step we should be taking before he becomes symptomatic. Does anyone have any thoughts? tx,Nina in PhillyThe support group mailing list should not be used for such a

> mailing. -- Ian Cribb P.Eng.

[Guest guest]

Nina,

No I haven't read Barb;s posting, I don't have time to read all postings, that is the main reason I haven't suscribed to PSC partners' newsletters (my wife feels I already spend too much time with " my people " ), but thank you for thinking of me. My main bilary tract was removed (and replaced with a section of bowel) in an operation in 1989 and my Bilirubin numbers have been very good since (not tracked before), maybe that is why.

Ian (52) PSC 89

Have to say I disagree - I think it's important that, like Dike explained, anyone that signs up for the support group gets the information, just once, that this does not automatically sign them up for the PSC Partners list. It's hard to keep track of, and I think

it's really helpful that PSC Partners sent out a mailing to distinguish the two. Don't worry, I'm sure you won't be flooded with emails or anything now - I think that was the point of Dike's email.

Meanwhile, Ian, did you read the article Barb just posted about pre-cirrhosis surgery for management of PSC? I had a little trouble getting through it but i THINK it said that Hopkins is advising non-cirrhotic PSC patients with increased levels of Bilirubin to undergo

surgery on their biliary tract? Is that right? It made me think of you because, isn't that what you had done - or am i just confused? I'm very interested in this for a number of reasons - 1) it seems to

me that your management has been really well done over the last several decade, 2) Hopkins is a really well-respected institution here in the States and that study seemed to cover an awfully long period of time and 3) because there's no evidence that my husband has yet

developed cirrhosis and I wonder if this is the kind of pro-active step we should be taking before he becomes symptomatic. Does anyone have any thoughts? tx,Nina in PhillyThe support group mailing list should not be used for such a

> mailing. -- Ian Cribb P.Eng.