Just starting down this road & have too many questions

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TheWorrier
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Date Joined Apr 2010
Total Posts : 6
   Posted 4/8/2010 12:11 PM (GMT -7)   
I'm new here and I'm hoping people can help me understand the information I have so far and also know what to expect & what questions to ask going forward. 
 
My husband is an alcoholic who had been feeling poorly including no appetite for several months.  After losing 30 lbs in 3 months, becoming jaundiced and falling down three times in one night I finally got him to go to urgent care on 3/27.  The doctor put him on Librium to help him stop drinking and ordered lots of blood tests.  Follow up with our regular doctor on 3/30 showed test results indicating liver problems.  He ordered repeats of a few tests and an ultrasound (completed yesterday) and we are scheduled with a GI doctor on Monday.
 
What I want to know is how to understand these test results enough to ask the right questions and head the right direction on Monday.  Here are some of the test results:
 
Alkaline Phosphatase 201 on 3/27, 183 on 3/30
ALT 216 on 3/27, 180 on 3/30
Bilirubin 4.4 on 3/27, 7.9 on 3/30
AST 479 on 3/27, 286 on 3/30
Creatinine .8
GGT >3,000
 
I appreciate any insight that can be offered, and I'm sure I will lean on this forum frequently in the coming days / weeks / months since I can see how supportive and informative it can be.  Thank you.
 

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/8/2010 12:29 PM (GMT -7)   
Has your husband stopped drinking? Totally? All I see is that he's taking librium to help him stop. **David**

TheWorrier
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/8/2010 12:31 PM (GMT -7)   
Unfortunately, no.  The Librium helped him live through the first few days with sweats / vomiting / shaking, etc but as you know doesn't stop the urge to drink.  He has stopped all hard alcohol (he previously drank about 500ml per day of Tequila) but he does have sips of wine.

westex
New Member


Date Joined Sep 2009
Total Posts : 17
   Posted 4/8/2010 12:58 PM (GMT -7)   
Tryin to teach my sis how to talk to ya , please be patient

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 1:00 PM (GMT -7)   

I'm a little confused here, but it looks like Westex posted for you, Worrier, and then you posted.  Is that correct?  At any rate, welcome to the forum.

Your husband's liver enzymes are elevated, though they did decrease some when he switched from tequila to wine and assumedly is drinking less.  I will tell you, though, that it is absolutely crucial that he stop drinking alcohol entirely, or he will die from liver disease.  If necessary, he should go to a detox center and then become active in AA, meaning meetings daily if they are available in your area, or as often as they are.  He needs to spend as much time in recovery as he did drinking.  You have only to read some of the posts on here related to liver disease and alcohol to know that he is playing with fire by continuing to drink at this point.  If he continues to drink, there is nothing the doctors can do to help his liver disease.  Also, he should be referred to a hepatologist (liver specialist), not a GI doc.  Also, if he is thinking he will just drink until he needs a liver transplant, you both need to know that an alcoholic cannot even be evaluated for a liver transplant until he has 6 months of documented sobriety in AA or alcohol counseling (at the discretion of the transplant center.)

I suggest you read the info in the folder Hepatitis Resources, at the top of the page.  There is a lot of good material in there.

Hugs,

Connie



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

Post Edited (hep93) : 4/8/2010 2:27:09 PM (GMT-6)


westex
New Member


Date Joined Sep 2009
Total Posts : 17
   Posted 4/8/2010 1:10 PM (GMT -7)   
nono KAT IS NEW ON COMPUTERS AND GONA try to visit with ya.  please bare with her as she will be startin treatins soon.   thanks

westex
New Member


Date Joined Sep 2009
Total Posts : 17
   Posted 4/8/2010 1:12 PM (GMT -7)   
CONNIE , I WAS POSTIN FOR MY SIS KAT , SORRY FOR CONFUSIONS. I WAS HERE A FEW MONTHS AGO TALKIN TO U .

TheWorrier
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/8/2010 1:13 PM (GMT -7)   
I think Westex is trying to get his sister into the forum, but I'm not sure exactly.

I think we both know he needs to quit drinking completely, but I don't know if can make that big of a change. And I know enough about the program to know if he doesn't want to quit then no-one can make it happen. We've been professional wine consultants and have a large wine collection, and he's just not ready to give that up - although he's down to about 1/2 glass, trying to enjoy some of his favorites. I also think he's in denial about how bad it really is, and probably when we see the doctor Monday they'll tell him more and maybe he'll realize he needs to stop.

So, when we go to the GI doctor do I ask for a referral to a hepatologist? We're with Kaiser so it's all through their referral system. Thank you for your help & information...
Patty


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/8/2010 1:28 PM (GMT -7)   
nono Hi,Iam Buffy, in aug. of 2009 i was diagnose with hep.c and cir.liver. Doctors are going to start Inferon shots ,treatment in Aug. Is there anyone that can help me out? Whats it like or the side effects,in my language. Please help if you can. new at the computer. God Bless to all;

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 1:34 PM (GMT -7)   

You are right that he has to want to quit.  He needs to know that it is literally a matter of life and death.  And that change CAN be made.  I'm living proof, with 23 1/2 years of continuous sobriety, thanks to AA.  Prior to that, I kicked hard drugs.  You just have to want to be clean.  And after all this time, I'd really like to have a glass of wine occasionally, but I know that to do so is to die--so I don't.

When he sees the GI doc on Mon., see if he will request a referral to a hepatologist.  Otherwise, it will have to go through the primary care doc.

Hugs,

Connie


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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 1:43 PM (GMT -7)   

Hi Kat/Buffy.  I'm glad you made it here.  You actually should have started a new topic to introduce yourself, but since you are new with computers and this site, it's okay.  You would just get more replies that way. 

"The Combo," as it is known, has been successful in some patients, more so than interferon alone.  However, there is a new treatment which adds a 3rd drug, Telaprevir, which should be available early next year, that is even more effective and only needs to be taken for 24 weeks, as opposed to 48 wks. with the combo.  You might consider waiting for that.  Or you could go ahead with the combo and see if you are able to handle it.  One of the side effects is depression, so physicians often go ahead and prescribe an antidepressant prior to starting the combo.  You can read more about hep C treatment at this site:  http://www.hepatitis-central.com/hcv/ribavirin/toc.html  (Just click on that link.)

You will find a lot of information and support here, as well.

Good luck to you!

Connie


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


**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/8/2010 1:50 PM (GMT -7)   
Connies right. No drinking, period. Some hospitals may want 6 months of sobriety, but more is better. One of my nurses in the transplant unit made it clear. She said,"We're not here to give people a chance to see if they can kill a second liver by drinking. We call that the Mickey Mantle Syndrome.'' I was never much of a drinker and once I learned I had Hep C, stopped it. By the time I got into the transplant program (after a year of interferon/ribaviron), it had been 2 years without a glass of wine. Since my transplant, I've had a couple of half glasses of red wine, Thanksgiving, birthday. I can take it or leave it, is the difference. However, if I took a puff off a cigarette, I'd be back smoking, something I haven't done since 1978. If your husband is an addict to alcohol, he'll have to stop if he wants to live. It's that simple. Good luck! **David**

TheWorrier
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/8/2010 1:51 PM (GMT -7)   
Does anyone know if these test results are "OH MY GOD" high? I know they're above the normal limits, but I don't know relative to say ESLD type of results...
Patty


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/8/2010 4:22 PM (GMT -7)   

Patty, most are higher than mine have ever been (I have hep C and cirrhosis and am a liver cancer survivor), but not as high as some people's.  I must say, though, that in my case the numbers really don't reflect what is going on with me.  When I had liver cancer, they weren't even as high as your husband's.  So they take into consideration the scans and how I am feeling and looking more than the labs.  For anyone, the labs are just a starting point. 

Hugs,

Connie



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


TheWorrier
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/9/2010 7:29 AM (GMT -7)   
Thanks Connie.  I guess I'll try to let the numbers go for now & wait to see what the next step is on Monday.  Patience has never been my strong suit...
Patty


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/9/2010 9:48 AM (GMT -7)   

Mine, either, Patty, but I've learned it out of necessity.  Three weeks in a body cast will do that to you.

Hugs,

Connie


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


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 4/9/2010 1:41 PM (GMT -7)   
he needs to give that up or it gonna be bad for him. i watched my mom die of liver disease (yes she was a alcoholic and she stopped but it is too late). the ascities, the tiredness, and everything else. she was in so much pain from the legs on. she was so jaundiced sometimes and it was always something. she was on the road to dying two years ago until i stepped in and helped which gave her an extra year to spend with her family. liver disease is a rough disease which no one deserves. i would strongly advise you to get your hubby to read some of these posts. particularly nc born and bred, allie, and even mine. i have my story of my moms in here somewhere and he can see how bad alcohol is for a person esp. with liver disease. connie is a good source of information.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/10/2010 7:17 PM (GMT -7)   
yeah Hi Connie, The new drug you were talking about,Telaprevir, i found it on the computer,wondering if you have started this one, Its only for 24 wks. I would appreciate if you could give me some more info. on this one. Thanks alot and may GOD BLESS YOU;

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/10/2010 9:31 PM (GMT -7)   

Kat, the new combo which includes Telaprevir is now in final trials.  It is expected to be widely available early next year, which is when I expect to start taking it.  My hepatologist feels that my hep C is not very aggressive and therefore she suggested I wait until next year instead of participating in the trial.  I think she wants to see how the people taking it now will fare in terms of clearance of the virus, any side effects, etc.

Hugs,

Connie


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


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/11/2010 7:35 AM (GMT -7)   
Connie, thanks for getting back to me so soon ,i go back  tosee the baylor doc. in june. I will ask him more on the telaprevir.They seem to think the liver is repairing its self and start  on the hepc. Iwas a beer drinker,havent had one as of today,for 8 months yeaaaaa;;;;  KAT HAVE NICE DAY TO YOU AND EVERYONE.      

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/11/2010 9:37 AM (GMT -7)   

Kat, congrats on stopping drinking!  That is the single best thing you could do for your liver.  Do you know when you contracted hep C?  Sometimes a person's immune system will spontaneously throw off the virus, though one will always test positive for hep C.  I'm trying to ascertain if your cirrhosis is from hep C or drinking.  Have you had a liver biopsy?  Since your doctors are ready to start hep C treatment on you, though, that would indicate that you have chronic active hepatitis and have probably been infected for some time.

Hugs,

Connie



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


kat57
Regular Member


Date Joined Apr 2010
Total Posts : 23
   Posted 4/11/2010 12:03 PM (GMT -7)   
Connie, idonot know if the cirrhosis or hep. came from drinking or not i was not a real heavy drinker, a 6pk. aday while working in yard etc. but i have induldge. i have not had a biopsy,can they tell from the blood work about the cirrhosis? i have know ideal when i contracted the hep. know one has said any thing to that affect. iam seeing 2 doc. one from here, and one from baylor. i just woke up in aug. was sick and went to er. by the way i didnt have to go aaa. quiet on my own.   Thanks Kat;

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/11/2010 12:44 PM (GMT -7)   

Kat, you wouldn't have contracted hep C from drinking.  It's a blood-borne disease, meaning it is usually transmitted through blood transfusions prior to 1993 or to shared needles or a needle stick.  I always thought that cirrhosis could only be diagnosed via a liver biopsy.  A 6-pack a day is a lot of beer (even occasionally), but if you were able to stop on your own, you were probably just a heavy drinker and not an alcoholic.

Let us know what happens at your next doctor appt.

Hugs,

Connie



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

Post Edited (hep93) : 4/11/2010 10:40:43 PM (GMT-6)


dontknowwhattodo
Regular Member


Date Joined Sep 2009
Total Posts : 44
   Posted 4/11/2010 8:15 PM (GMT -7)   
He HAS to stop drinking!  No if, ands or buts!.... There is a fine line with this disease, if you stop drinking before you cross that line you can buy yourself some time, possibly years with the No drinking and the proper diet, vitamins and meds... If he does not stop drinking, not just slow down or changing to wine, he will go past that line of no return and there will be nothing that can be done for him-- and he will die!
 
Sorry for being so blunt-- but it is the truth and he needs to know this-- I know this for a fact!  I just lost my husband from this disease and its no joke, you drink you die!
 
My thoughts are with you during this -- it is a very hard thing to go though-- God Bless!

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 4/11/2010 10:27 PM (GMT -7)   
Somehow... they don't seem to listen.. even when this dragon is bearing down on them breathing fire... I agree with u.. u drink .. u die.. and not sorry for being blunt... Sandi.. watching the person you spent all your life waiting for... dying from liver cancer is horrible.. and he will die...I will have to go on and live with the nightmares...
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