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Posted 9/14/2013 10:03 PM (GMT 0)
Hi:
I have some questions in hopes that you have some sort of answer for me. I was diagnosed with non alcoholic cirrhosis Nov., 2012

Recently I started experiencing nausea after eating and have cut my portions in half, as a result. In the last month or so I have vomited, which is atypical for me. I have also started to experience more pain in my liver, pancreas and my kidneys. I am very sensitive to the touch in my abdominal area. I noticed that my threshold for pain has also worsened, which is unusual for me as well. The fatigue has worsened to the point where I am good for an hour or so, so I very rarely leave the house.

Meld score has gone up from 12 to 13 since Nov., and I fear it has gone up again.

Does this mean that I am getting worse? What is normal time frame for changes in the meld score?

Thanks for your help,

BeBo
Posted 9/15/2013 12:41 AM (GMT 0)
Hi, Bebo. I see that in your first post back in June, you stated you had been diagnosed with congenital hepatic fibrosis. That is not the same as cirrhosis, but comes prior to progressing to cirrhosis. So have you definitely been diagnosed with cirrhosis? If this was congenital, did your mom have hep B or C? This is an unusual story and I am just trying to piece together what is happening. Are you now being seen by a hepatologist?

Hugs,
Connie
Posted 9/15/2013 1:33 AM (GMT 0)
Hi Bebo, welcome back.

Since liver disease is so serious and since you know your MELD score is rising, I am assuming you are under the care of a hepatologist.

Since your symptoms have increased so much, thinking your status may be changing is a reasonable conclusion...time for a full work up...have you had the CT or MRI scans recently, a liver biopsy? Best get that looking into ASAP.

Mama Lama
Posted 9/15/2013 2:18 AM (GMT 0)
Hi:

Thanks for responding.

Yes, I have had every test imaginable done including a liver biopsy, and am staying on top of blood work, etc. The doctor (1st hepatologist) doesn't know what has caused the cirrhosis and was guessing that it could be congenital. I have made several inquiries and no one in my family have ever suffered from liver disease or hepatitis. I did get a second opinion from a Hepatologst in San Diego because the first Hepatologist was not very informative and kept going back and forth on my diagnosis. At first he said it was congenital and then hepatic fibrosis syndrome, which he said is in fact cirrhosis of the liver.

Regarding the nausea, to the best of your knowledge is that related to liver disease and a sign that I am getting worse? What about the abdominal pain? Is that normal, as well?

Thank you!

Bebo
Posted 9/15/2013 3:26 AM (GMT 0)
Bebo,

Where exactly is your abdominal pain? RUQ discomforts are usually with people that have inflammation... There can be many other reasons. I was diagnosed with moderate fatty liver earlier thus year and I too have/had RUQ discomforts followed by burping. My GI has told me gallstone most likely.

You should consult your doctor to narrow down the reason for the discomfort.

Post Edited By Moderator (hep93) : 9/14/2013 11:16:00 PM (GMT-6)

Posted 9/15/2013 4:26 AM (GMT 0)
I have pain in my kidneys, liver and other organs. The doctor told me that my spleen is inflamed and my liver has become smaller.

I will be seeing my doctor again in about another month and I will talk to him. It will also be time to check out my meld score again.

Thank you for your help.

Bebo
Posted 9/15/2013 5:20 AM (GMT 0)
Bebo, I don't think much of your first hepatologist.

The liver itself does not have pain receptors. However, you could have fatty liver or gall stones, and it has been mentioned that you have an inflamed spleen. It could also be enlarged. You could also have a kidney stone or infection.

I hope that your current hepatologist can sort this all out for you. Try eliminating beef from your diet and see if that offers you any relief.

Hugs,
Connie
Posted 9/15/2013 8:23 PM (GMT 0)
hi bebo, may i ask how your blood sugar, lipids, and blood pressure levels are. barry
Posted 9/15/2013 9:57 PM (GMT 0)
Hi, Barry:

Glucose: 71
Blood pressure: 124/56
Lipid panel:

Cholesterol - 143
Triglyceride - 104
HDL - 39
LDL - 83
Cholesterol/High density - 3.7

I made a mistake when I said my spleen was inflamed. My pancreas is enlarged, slightly. The ultrasound showed that all my organs were unchanged.

Thank you!
Posted 9/16/2013 1:20 AM (GMT 0)
Do you have results from a recent liver function test.

Bili, AST, ALT, INR etc. Certain labs being higher when looking at it as a ratio can point you in right direction. Such as a liver disease, toxicity, obstruction etc.
Posted 9/16/2013 3:10 AM (GMT 0)
Nothing recent. Liver biopsy was the last test on my liver, and that was in March of this year.

I will be seeing my Hepatologist in about a month and I will talk to him about what I have been experiencing.

Thank you so much for your help.

Bebo
Posted 9/16/2013 3:34 AM (GMT 0)
glad you have a hepatologist to figure this one out. run all the tests again and the only thing we haven't discussed is AIH, or have you? good luck Bebo

barry

Post Edited By Moderator (hep93) : 9/16/2013 12:39:20 PM (GMT-6)

Posted 9/16/2013 4:36 PM (GMT 0)
Bebo,

I just read this whole string and since I have AIH (autoimmune hepatitis), I naturally went to that in my head.  Has your hepatologist done any blood tests to check your autoimmune markers?

http://www.uptodate.com/contents/serologic-markers-of-autoimmune-hepatitis

This link has a quick mention of them.  I have heard of some people whose hepatologists hadn't automatically checked for AIH as they had never had a patient with it.  Since you came to SD to see another hepatologist, I'm hoping you went to one of the bigger hospitals so hopefully they did check.

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