Trying to live with my son's cirrnhosis

[kasikiva]

My questions involve my adult son who has alcoholic cirrhosis.  I just found out about it around a year ago while he was is a treatment facility - I don't think the doctor meant to tell me; I think he mentioned it because he thought I knew aleady.
Since then, my son has stopped drinking, goes to AA, is meeting new friends and beginning a new life. HE did have one short slip and then felt so terrible about what he had done.  At the hospital immediately after, his bilirubin was up slightly .

I know he could look up his disease online if he wanted to, but I don't think he has - if so, he would have seen what I have seen and be scared out of his mind!  I also being to a liver support group which has been very helpful to me.

My son is doing very well - he has not has any of the symptoms associated with decompensated cirrhosis - no acites (ascites), no edema, no jaundice, etc.  He just seems well.  He does take lactulose once a day, though - and doesn't even mind it!

I have about the last three or four of his lab reports and his levels are fine - I knew what to look for because I reseached that, too.  Plus I asked
the knowledgable memenber of the live group to comment on my son's figures.


I will give you some of them now:

    Here are a few newer (12/04) numbers -
  >> ALKP 231 U/l
  >> CREA 1.1 mg/dl
  >> BUN 10 mg/dl
  >> B-CR 9
  >> AST 22 U/l
  >> ALT 13 U/l
  >> LDH 146 U/l
  >>
  >> BILIRUBIN, TOTALL: .5 MG/DL
  >> BILIRUBIN, Direct .2 MG/DL
   >> ALK. PHOSPHATASE: 260 U/L (my son take other meds- he is bi-polar)
>> ALT: 30 U/L
>> AST: 30 U/L
>>
>> His ALBUMIN was 3.6 G/DL in December.
>>
>> Prothrombin Time: 12.2 Seconds
>> Prothrombin Time 1.1 VALUE
>>
>>  NA (SODIUM) 145 mmol/l
>> K (POTASSIUM) 4.4 mmol/l
>>
>> 12/10/04
>>
>> White Blood Cell Count: 4.4
>> RBC : 4.09
>> Hemoglobin :13.7
>> Hematocrit : 38.4
>> Platlet : 145
>>
>> These don't look so bacd, do they??
>>
>> I guess my question is that no matter how much I look for survival times, I keep getting conflicting answers, as though no one has done any studies for a long time.  I just cannot grasp that my son is going to lose his life over this disease.  He must have normally functioning part of his liver
left.  No doctor has told him what percentage.  As a matter of fact, no doctor has really told him anything much except that he better stop drinking - which he has.

>>
>> He has not had a biopsy.  He did have on sonogram about 2/2 years ago..
>>
>> If Stephen does not drink again, takes good care of himself,  can he live a fairly long life..

Thank you for all the time an attention you give to my letter - if you need more information, I'll try and get it for you.  It's a little difficult being the mom of an adult child - no doctor will talk to me unless Stephen signs a paper- which he did for me to get his lab reports.

>>
>> Thank you -
>>
>> B.J. Perkins

[Kevin Pho, MD]

The blood tests do not show severe abnormalities, but in cases of cirrhosis, this can be the case.

A liver biopsy would be the appropriate test to consider to evaluate the degree of damage.  

Unfortunately, short of a liver transplant, there is no "cure" for cirrhosis.  

As for prognosis, you can classify the degree of cirrhosis using the Child's Class score.  More information on calculating this score can be found here:
http://www.aafp.org/afp/20011115/1735.html

A Child's score of A can survive for 15-20 years, whereas a Child's score of C would only survive for 1-3 years.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com

[Christie2004]

I'm stunned that he has not had a liver biopsy.  

If it were my son, I'd get him to a large academic-associated hospital to be seen by a hepatologist to assess exactly where he stands so far as his cirrhosis is concerned.  

A sonogram done years ago is not relevant now.  Good luck!

[Empreinte]

Hi There B.J.~

I was just reading your post and my heart goes out to you with what you and your son have been through and are facing, at present. Please keep in mind, and I know easier said than done,
situations can turn themselves around and what looks plain awful may have some answers for you both.

Try the Mayo Clinic in Rochester, Minnesota - The Gastro department is 1-507-284-2141 - ask for Shirley and tell her your story.  Ask if you can see a Dr. Tremaine.  He may be of great help to you and if you do get an appointment there, a piece of advice. I know you've done your research and such but if I were you and I have been to some extent - just a different illness - make a complete journal, AND I mean complete, (He'll definitely read it) of what has occurred and be very specific.  Bring all the testing with you and all the medications that have been given.  Word to word is difficult with these doctors.  They prefer to have everything written down.
Most tests will be repeated again and if there are testing that has not been brought up between you and any Doctor that you will be assigned to - ask them for it.  You'll get it.  I have been to the Mayo so if you head in that direction please feel free to E mail me at ***@**** with any questions you may have or if you think of anything to ask.  IT IS NOT A GIVEN that you would be assigned to Dr. Tremaine but it's worth a shot in your special circumstances.  Go to google and type in Dr. Tremaine at the Mayo Clinic in Rochester MN and watch everything that pulls up on him.  Good luck and my prayers are with you.  Don't stress out too much.  That was our big mistake and it makes matters even worse.  Just be calm and pray.  Also, remember that there is the Cleveland Clinic that I may be headed to.  I have to do research on them but they do look good, as well.  You will need a referring Doctor to help you out if you chose to do this but it will not hurt to call Shirley - Just ask for her.  She will point you in the right direction.  She's a great lady and, what is usually lacking in our world, filled with a ton of compassion.  She was a big help to me.
Post back here, as well, if you don't want to E me - I am concerned and especially due to your son's age. But I am not a Doc and who knows, what you hear at one place could be entirely different at another..........:) Keep your spirits up, B.J.  
Empreinte~

[kasikiva]

Thank you for your suggestion.  I will give it careful thought.

However, my son is an adult, living on his own and I have no real way of knowing what his doctors have said to him - he's an alcoholic who is on the recovery road (thank Goodness!!!), he suffers from bi-polar disorder, and cirrhosis.  He telle me that the doc told him he had a 'mild case' of cirrhosis after a sonogram three years ago.  Fortunately, he is not suffering from the diease yet; he is compensating, trying to live a healthy life now, and feels good.  

Of course the problem is the shortened life span - and really, I don't think at study has been done on the life span of cirrhotic patients at various stages of the disease in a long time.  I get different results when searching.

I don't think we have the money to seek treatment for Stephen in the hopsital you mentioned - and I have my doubts that he would go.  But, I wills stilll think about it and may call Shirley and talk to her.

Thanks to you, the doctor, and the other person who posted a reply to my message.

Kasikodi

[breeze111]

my grandfather who was only 54 died from cirrhosis of the liver from drinking and the doctors told him to stop, his skin was yellow and his stomach swelled up real big as though he was pregnant .. he just would not stop drinking and that is what killed him  cirrhosis of the liver, I hope your son is wise enough to stop for his own sake,