new member with AIH and Cirhossis

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ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 2/12/2010 1:20 PM (GMT -7)   
Dear Members,
     I am a new member, although I have been"lurking" and posting occasionally. I hesitate to tell my story for several reasons. But, I so appreciate everyone being so open and honest here and this as been a great help to me. So hopefully this can help someone else.
     I am 47, and was healthy until 2005.  While on vacation I had a siezure. No cause dx., after extensive work-up. For the next 2 mo. i had throbbing HA's , nausea, and finally  when i had trouble walking I went to the hospital (where i worked). DX. w/ bilateral subderal hematomas (brain bleed), had a craniotomy. Back at work in 6 weeks. No problems w/ labs. Then in 2006 I was sick, just sick. went to pcp, extensive labs done Bili very high. So, being fair, fat, and 40 had my gallbladder removed. in 2007. Everything has been down hill since. I had a MELD of 20, dx W/ AIH, hemolytic anemia and a lot of other AI diseases. I now take over 20 medications a day, plus procrit once a week. I did learn that general anesthesia can send a Bad liver down the shute. I didn't tell drs. i was a functional alcoholic forever. I have quit drinking my meld is now 9. I have gained 40 lbs. in 4 mo. am not yellow anymore.
    As you all know, this has been a roller coaster. I did have one false call for a liver. Fought w/ the transplant coordinator  over a required test, that pracically killed me the year before.(DSE), had a recent suicide attempt, and have been kicked off the list because of "depression"
     I have a family, w/ 2 grown daufgters. I miss my career and friends like crazy, and am so glad i found this support group. Very Sincerely Ailsa 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/12/2010 4:26 PM (GMT -7)   

Hi, Ailsa.  I'm glad you decided to tell us about yourself and your condition and background.  It makes it easier to help you.  I'm very proud of you for quitting alcohol.  As you know, alcohol is horrible for the liver, especially a diseased one.  Are you receiving treatment (medication and therapy) for your depression?  It's not at all uncommon for people with chronic diseases to become depressed.  I was diagnosed with depression for years and was on many antidepressants, but when I quit drinking and got really committed to AA, I found that the depression lifted and has never returned...and I don't require antidepressants.  So you might want to give that some consideration.  Part of your depression may also be connected to no longer drinking.  You have lost a your "best friend."  I cried like crazy the first couple of weeks without alcohol.  So again...you may find AA to be a lifesaver for you.  You also may be over-medicated.

Big hugs,

Connie


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


ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 2/15/2010 5:15 PM (GMT -7)   

Hi Connie,

Thanks for the quick response. Your knowledge is invaluable, I'm doing good w/ alcohol, although avoiding all tempting situations. You mentioned I could be overmedicated. Drs. have rx (with each others knowledge)    Cellcept, prednisone lasix, aldactone , synthroid, effexor, abilify, ativan, plaquinil, celebrex, prilosec, iron, vit b complex, caltrate, procrit and now asa. {IHate taking all these drugs!}

RX: for AIH, Hemolytic anemia, depression, lupus, Arthritis, hypothyroid and APS.

Labs: Meld is 9. I am currently off list, should I assertively try to get back on? (I know about the 6 mo. sober) and will have that by april. see hepatologist in may. I'm in pgh., with the starzl Institute.

Any info would be greatly appreciated. Thanks.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/15/2010 7:45 PM (GMT -7)   

Ailsa, are you going to AA?  It's not just 6 mos. sober, but 6 mos. of documented sobriety, either in AA or alcohol counseling, depending on the particular transplant center.  You need to find out definitely about this.  I know you had said that you'd not told them you were a functional alcoholic, although you are not now drinking.  If you want placement on the transplant list, you need to be honest.

You also might want to ask a pharmacist about possible drug interactions between all the Rxs you are on.  If you are still depressed, despite the Effexor and Abilify, you may need different meds.

Hugs,

Connie

 


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

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