Bilirubin levels

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healthynow
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   Posted 3/11/2011 2:28 PM (GMT -6)   
SW had asked about bilirubin levels. Here's what my husband's experience has been...

When my hubby was first sick his bilirubin level was 6. And he looked pretty darn yellow...eyes and skin. 5 days after he stopped drinking and had his labs done again his bilirubin was over 12. Around 12.3 I think. Also, all his other liver labs were higher than before he stopped drinking. A week after this, the bilirubin was down to about 11.5. The other liver labs showed a tiny improvement. His GI doc said that the bilirubin might take a very long time...months to get to a normal range (if ever). He said that the bilirubin is the test that takes the longest to improve.

GI said that the test he considered most important was the INR.

We are now 5+ months of no drinking. Each set of labs has improved. The space between labs has gotten longer. Some of the liver labs have gotten into the normal range. His bilirubin is around 2.2 at last labs...about 2 times high normal. I can't tell that he has any yellow in the eyes or skin.

He will have labs in about a month. By then it will be 3 months since his last set. I am hoping for more improvement.

Emma

Post Edited (healthynow) : 3/11/2011 12:52:54 PM (GMT-7)


SadWife
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Date Joined Jan 2011
Total Posts : 321
   Posted 3/11/2011 3:34 PM (GMT -6)   
Thanks for the info Emma! But I'm still a little confused...If they stop drinking, I'm guessing it depends on how much liver function they have remaining as as to whether these labs WILL improve. I know that cirrhosis continues to progress even when you stop drinking, so how is it that the liver functions improve that much? I could understand if they just stablized but didn't get worse..but to get that much better??....does this make sense?

healthynow
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Date Joined Oct 2010
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   Posted 3/11/2011 3:54 PM (GMT -6)   
SW, I agree. So much to learn, and still everything a mystery.

GI doc had told us at the start that if hubby did not drink, took the vitamins, ate well, etc., that over a long period of time labs could get close to normal. My husband's are moving in that direction, but not mid normal so far...high normals and low normals. Some tests are still out of normal range but a whole lot closer to normal than 5 months ago. At last GI visit (2 months ago) doctor said that this may be as good as it gets...that this might be hubby's "new normal". But no one really seems to know for sure.

My understanding is with no alcohol, cirrhosis can be slowed or stopped in its progression. That is what I am hoping and praying for. That my husband's cirrhosis was stopped in its tracks and that I will have him with me for a long, long, long time.

And...husband says he feels way better than he ever did when he was drinking. Did you ask about the "dry leaves" feeling in the throat? I had posted a bit about that after you (or Mary) asked about it. That was the thing that hubby hated the most. But the positive changes since no alcohol...he sleeps through the night...no dry leaves/dry heaves...no more bloody noses...no "I need to sleep RIGHT NOW!" kinds of feelings...no days of complete exhaustion and fatigue where he couldn't get out of bed.

Many times I am just living in fear waiting for something bad to happen and other times I take the words I have learned on this forum to "let go and let God", take one day at a time, one moment at a time.

Emma

Post Edited (healthynow) : 3/11/2011 2:24:57 PM (GMT-7)


SadWife
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Date Joined Jan 2011
Total Posts : 321
   Posted 3/11/2011 4:02 PM (GMT -6)   
I see, thanks for explaining! So I'm guessing we are all going to experience something different depending on the progression and general overall health of our loved ones...But that makes perfect sense! So when will your hubby be eligible for a transplant?

healthynow
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Date Joined Oct 2010
Total Posts : 1716
   Posted 3/11/2011 4:13 PM (GMT -6)   
The only thing his doctor has every said was to get the documentation for 6 months no alcohol. Just to have in file. So if he ever gets really sick then he wouldn't have to deal with it...he could just start the process.

We are praying and hoping that his cirrhosis was caught early and that lifestyle changes will be enough to keep his own liver...forever.


Emma yeah

SadWife
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Date Joined Jan 2011
Total Posts : 321
   Posted 3/11/2011 4:19 PM (GMT -6)   
That's great and that's what we all hope for!
Thanks!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/11/2011 4:20 PM (GMT -6)   

SW, most everyone who stops drinking will show improvement over time.  Progression CAN be stopped (though cirrhosis can't be reversed) by taking the measures that Emma mentioned.  Our member, Rick, was on the transplant list and close to dying...when he stopped drinking and slowly improved so much that he was taken off the list.  It all depends on whether the patient stopped drinking in time.  PG's husband stopped, but not soon enough...so he died of ESLD.

My own liver enzymes remain slightly elevated...and that's the hep C at work...I stopped drinking 24 1/2 yrs. ago.  If I hadn't, I'm positive I wouldn't be here today.

I am seen every 6 mos. and get bloodwork and an MRI.

Hugs,

Connie


hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

SadWife
Regular Member


Date Joined Jan 2011
Total Posts : 321
   Posted 3/11/2011 4:58 PM (GMT -6)   
You know it's so easy to get confused about this disease...you read one thing and the Dr. tells you another..He said my husband is in liver failure and I always wonder what exactly does that mean? We take things so literal so when somebody says failure, I guess you just think "failing" or falling and it can't stop. Since he has stopped drinking, is it possible for the ascites to go away even though he has portal hypertension? Or will that always stay there unless he has that TIPS procedure done and the blood flow is re-routed? I'm assuming yes, but thought I'd make sure............
 Personally to me, they shouldn't call it liver failure unless that means it is failing 100% and there is no return....Maybe everybody wouldn't be so confused by it all...Know what I mean?

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3257
   Posted 3/11/2011 5:51 PM (GMT -6)   
SW,
I had a failing liver for 5 years. If they waited until it was 100% failure, then it would be called death.

SadWife
Regular Member


Date Joined Jan 2011
Total Posts : 321
   Posted 3/11/2011 6:26 PM (GMT -6)   
Yea, I guess you're right, didn't think about it that way. There's just so many terms to deal with...I remember when I first started researching this I wondered where one ended and another started.
Once you've been through it though I guess it's so much easier to understand.
We live and learn! :)

Nattyd09
Regular Member


Date Joined Mar 2011
Total Posts : 240
   Posted 3/11/2011 9:25 PM (GMT -6)   
I dont understand. I know my Mother in laws bilirubin levels were at 2.5 and they said it was very high. I guess maybe it depends on the function of the liver. Hers was at less than 10% when last checked. Now the doctors say the only way to tell if her liver is doing ok is by her bilirubin levels and the higher they get the less function she has. They were not too happy about the levels being at 2.5 Is it different for every person and the condition they are in?

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1716
   Posted 3/11/2011 9:51 PM (GMT -6)   
I think one of the moderators need to comment on that.

But the test I am referring to for my husband is called "Bilibubin, total, serum" and is measured as mg/dL with a normal range of 0.2 - 1.2.

Moderators?

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/11/2011 11:30 PM (GMT -6)   
Natty, this is a very individualistic disease.  Everyone is different.  There are just general guidelines, such as the bilirubin number, ammonia level, prothrombin time, etc.  Generally, when they say "liver failure" it means that the liver is decompensated; i.e., is no longer able to maintain proper function.
 
I have never been told that I was in liver failure or had ESLD...even when I had a huge, cancerous liver tumor.  I WAS told that without treatment targeted at the tumor, I had 6 months or less to live.  I agreed to everything they wanted to try, including a study drug...and I'm still here and have not decompensated.
 
However, I still have hep C.  The overwhelming fatigue is my only symptom.
 
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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