Guest guest Posted April 2, 2002 Report Share Posted April 2, 2002 Message: 1 Date: Tue, 02 Apr 2002 14:34:58 -0000 From: "linda48170" <lsdg@...> Subject: Newly Diagnosed This is my first post here on LiverSupport. I was just diagnosed with Autoimmune Hepatitis. I have now read every article I could find on the internet, printed them, and keep them for reference. To say the least, I am totally shocked and greatly saddened by this diagnosis. My gastroenterologist is refering me to a hepatologist. What I need is some idea of what questions I should ask him/her. I have cirrhosis (sp?) also. My first question will be about my life expectancy. Any help you can give me will be greatly appreciated. I am really at a loss here. To say the least, I am in great need of help. If anyone wants to e-mail me directly, the addy is lsdg@.... Thank you. First of all, 80% of people respond well to conventional therapy. Most of those who respond well have normal life spans. When you see your doctor, ask about probable treatment and who you can talk to if side effects become difficult. Keep records of everything. If you have someone you can take to this appointment, to help you remember what is said and evaluate it, do so. The progress of the disease and reactions to the drugs seem to be a little different for everyone. You're fortunate that you will have a hepatologist to help you through the process. You mention that you've done a lot of reserarch. If you don't yet have a standard reference book such as Palmer's Guide to Liver Disease or a similar book by G. Worman, I'd suggest that you get at least one. If they aren't available locally, go to amazon.com or to Palmer's website, www.liverdisease.com. The format of messages changed today, so some of us may be having trouble figuring out how to open messages and respond to them. I certainly am! Harper (female, 57, extreme AIH dx 5/00, doing very well) For some reason, the format of group messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2002 Report Share Posted April 5, 2002 Harper, i`m curious as to how long you felt ill for before your diagnoses. or was it jaundice that caused you to know something was wrong.I`m confused how some people can feel well, and not know anything is wrong (yet could have bad cirrosis ) and some people have a really hard time with the illness. jackie >From: flatcat9@... >Reply- > >Subject: Re: [ ] - Newly diagnosed >Date: Tue, 2 Apr 2002 20:12:12 EST > >Message: 1 > Date: Tue, 02 Apr 2002 14:34:58 -0000 > From: "linda48170" >Subject: Newly Diagnosed > >This is my first post here on LiverSupport. I was just diagnosed >with Autoimmune Hepatitis. I have now read every article I could >find on the internet, printed them, and keep them for reference. To >say the least, I am totally shocked and greatly saddened by this >diagnosis. > >My gastroenterologist is refering me to a hepatologist. What I need >is some idea of what questions I should ask him/her. I have >cirrhosis (sp?) also. My first question will be about my life >expectancy. > >Any help you can give me will be greatly appreciated. I am really >at a loss here. To say the least, I am in great need of help. > >If anyone wants to e-mail me directly, the addy is >lsdg@.... Thank you. > > > >First of all, 80% of people respond well to conventional therapy. Most of >those who respond well have normal life spans. > >When you see your doctor, ask about probable treatment and who you can talk >to if side effects become difficult. Keep records of everything. If you >have someone you can take to this appointment, to help you remember what is >said and evaluate it, do so. > >The progress of the disease and reactions to the drugs seem to be a little >different for everyone. You're fortunate that you will have a hepatologist >to help you through the process. > >You mention that you've done a lot of reserarch. If you don't yet have a >standard reference book such as Palmer's Guide to Liver Disease or a >similar book by G. Worman, I'd suggest that you get at least one. If >they aren't available locally, go to amazon.com or to Palmer's website, >www.liverdisease.com. > >The format of messages changed today, so some of us may be having trouble >figuring out how to open messages and respond to them. I certainly am! >Harper (female, 57, extreme AIH dx 5/00, doing very well) > >For some reason, the format of group messages Send and receive Hotmail on your mobile device: Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi ! Welcome to the group!!!! Here you will have support!! Understanding!!!!!!!!!!! Compassion!!!!!!!!! And I'm sure Ken could through some good poetry your way!!!!!!!!! It is worth being in the group for just that alone! I'm glad that you are here and reaching out! That is a great first step! Being able to express your concerns and vent your frustration are just a few things that make this group so wonderful! The information is fantastic! I'm truly sorry that the family and/or friends are a little slow on the " getting it " part. That does make for some stress. I'm sure that all of this is a bit over whelming. I hope that today is a good day for you and I hope and will pray for a speedy process on those around you getting that you have a illness that does affect you and that their support and concern will be forth coming! Take care! XXX's Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2005 Report Share Posted July 20, 2005 Hi ! Welcome to the group!!!! Here you will have support!! Understanding!!!!!!!!!!! Compassion!!!!!!!!! And I'm sure Ken could through some good poetry your way!!!!!!!!! It is worth being in the group for just that alone! I'm glad that you are here and reaching out! That is a great first step! Being able to express your concerns and vent your frustration are just a few things that make this group so wonderful! The information is fantastic! I'm truly sorry that the family and/or friends are a little slow on the " getting it " part. That does make for some stress. I'm sure that all of this is a bit over whelming. I hope that today is a good day for you and I hope and will pray for a speedy process on those around you getting that you have a illness that does affect you and that their support and concern will be forth coming! Take care! XXX's Kim Quote Link to comment Share on other sites More sharing options...
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