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Dakota09
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/7/2009 6:33 AM (GMT -7)   
hi i am a new member i have had autoimmune hep for nearly 2 years now and it like its not going to get any better i have been told that i will need a new liver in the next 10 to 20 years so i am kind of a bit shocked i would really like some advice so if any could reply i would be so grateful.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/7/2009 8:16 AM (GMT -7)   
Hello Dakota09,   Welcome to HealingWell.  I am so sorry that you have been diagnosed with AIH.  We have quite a few members that have it too,  so you have come to the right forum.  All of our members are the tops........they are very knowlegdeable and compassionate. 
 
My husband had Hep C but he didn't get any treatment for it, so I don't have any experience with the different treatments that are available.  But plenty of others do, so stick around and again welcome.....I am glad you found us.....Thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/7/2009 11:57 AM (GMT -7)   

Hi, Dakota, and welcome to the forum!  I know there are some other members here who have AIH, so give it a few days and I'm sure they will respond to your post.  I know that Prednisone is one medication that is used to treat AIH.  Are you on any meds at this point?

You are sure to find the support and info you need here.  So again, welcome!!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/9/2009 3:54 AM (GMT -7)   
Hi Dakota and welcome.

I too was diagnosised with AIH a little over three years ago. I certainly can understand your shock at finding out that this disease is very hard to control and the possibility exists that you will need a transplant. I have never been in remission either since my official diagnosis and last year got the news that it had progressed to cirrhosis. I do not know what meds you are currently taking but I can say for me it has helped when they increased my pred back to 10 mgs a day up from 5. When it was lowered my enyzmes shot back up so for me it helped. Also it helps me with the fatigue factor. Diet has also been important for me I think, reducing my sodium, increasing vegetables, whole grains and fish. I also drink a variety of fresh juices. Since I also have crohns I have reduced my dairy also and have done soy products instead. Although these things have not seemed to get my enzymes completely in the normal range it has I believe helped reduce them and helped me feel somewhat better. Hope this answered your question.

Lucy

Dakota09
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/11/2009 12:50 PM (GMT -7)   
I just want to say thanks to replying to my last post i am really grateful. It's also good to know that there are people out there that know what i am going through as everyone i talk to able it as no idea.

At the moment i am on 8 different types of medication and it's really getting me down after finding out that i will have to have a transplant in in a few years time. Also can someone tell me what an enzyme is please.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/11/2009 1:38 PM (GMT -7)   

Hi, Lucy.  I am glad that you had a response to your post.  In answer to your question, enzymes are complex proteins that break down food substances, causing them to break down into simpler compounds.  When the liver enzymes test as above normal, it generally means that your liver is damaged and having to work hard to break down the foods and drugs that it filters.  That is why red meat is discouraged; it is the hardest substance for the liver to break down.  The testing of liver enzymes is the easiest way to determine liver health or damage.  However, they are not the be-all of liver knowledge.  Biopsies and scans tell far more.  I have hep C and had liver cancer; however, my liver enzymes were never as high as 3 x normal.  rolleyes

Although I have blood work every 3-4 months, the doctors rely more on the results of CT scans and MRIs with contrast (also every 3-4 mos.) to see what is going on.  The blood work also includes testing for potassium, protein, etc., which are also important in liver health.

Please do not focus so much on possibly needing a transplant a few years from now.  Learn to live one day at a time and do what you have to do today to feel better.  Don't forget to have some fun.  Eat a healthful diet and get plenty of sleep.  It's important that you take care of yourself.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 2/11/2009 3:41 PM (GMT -7)   

Hi, Dakota

I also have AIH, for the past two years or so.  I was on prednisone 40 mg for a whole year, and I'm on other meds now (cellcept).  I have "early" cirrhosis, which was found on the liver biopsy they took  when I was getting the diagnostic tests.  I have been mostly under control, but when meds were lowered "too far", the enzymes went up.  I feel good most of the time, but have some nausea as a side effect.

I also agree--try not to worry about transplants.  Your future is not that predictable, and some people can stop meds entirely without a recurrence.  (in other words, cured).  Most don't, but it is not impossible.  It is important to find a doctor who you trust, and then just live, following the doctor's orders.  I am the type who will drive myself crazy with options---should I eat this?  should I take that?  I have found that good general nutrition with  rest and exercise are most important, then just go and do your thing in life!!!!  Let the doctor do the worrying!!!!

Please ask all the questions you want, and if you have a specific question for me, I will be glad to answer it.
 
Pix

Dakota09
New Member


Date Joined Feb 2009
Total Posts : 3
   Posted 2/19/2009 7:11 AM (GMT -7)   
What i would like to know is what is cirrhosis and what does enzyme mean!

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 2/19/2009 4:41 PM (GMT 0)   

Hi Dakota,

Hep C had a great explanation of enzymes (a couple of posts above) and when I was trying to understand cirrhosis, I went to google and typed in cirrhosis.   I used google images also.     Note some of the posts from 1Shelly1.   I think they've been "bumped" up towards the top of the forum.   She explains in understandable language about the liver and other things that really helped me understand what was going on with my best friend.   Knowledge and understanding are two more ways to combat this disease.  

Take care.

 


Joan
 
Best friend is in ESLD, has HepC and cirrhosis. 


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 2/19/2009 12:53 PM (GMT -7)   

Dear Dakota!

 

Are you getting the answers you seek by following the references in the posts?  How are you feeling?  How have the doctors been treating you?

 

Pix

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