rapid weight loss and elevated ammonia

Hello everyone. I'm new to the site and I'm thrilled to have found it. I was diagnosed with hep c in 2000 but the drs say that I've had it for at least 25 yrs. Recently I was told that I was in end stage liver failure. It was a real slap in the face. I've been hospitalized 3 times in 10 months due to ascites and had paracentesis each time. Very painful. I've not had very good luck with the drs in my area. I've asked direct questions and still have no answers. In the past year and a half I have lost over 130 pounds but they haven't told me why. I've never seen it addressed on any other sites either. Also, my ammonia level is at 95 & I'm taking lactulose 30cc 3x day. It's horrible. I take lasix, aldactone, potassium and the lactulose. I've been different from confusion, memory loss and loss of balance. My real concern is the weight loss. I'm so scared. If anyone has any info about weight loss being a side effect of a failing liver please reply. Thx

Thank you so much. I had pretty much decided that the nutrients not absorbing was the issue. I just needed validation.

Unfortunately I'm not a candidate for transplant because my platelet count is extremely low due to thrombocytopenia from portal hypertension causing enlargment of the spleen. Of all the things I do know I don't know MELD or genotype. I have an appointment with a specialist at UVA in Charlottesville Va next Friday and I'll be sure to ask. Thanks!

Post Edited (wildflower66) : 4/5/2014 9:30:32 AM (GMT-6)

Hi again WW, Just wanted to ask what transplant center evaluated you, and how long ago? How low are your platelets. I ask because my husband also has all three things you have, and did treat twice, eradicating Hep C. When did you have a biopsy (I figure it was in 2000 when diagnosed). Were you ever offered treatment for the Hep C? And do you have a copy of any blood test? Lots of questions, but we have a lot of folks here that have experience in all aspects of what you are living with who will chime in with experience and their suggestions.

I am very happy to hear you are going to another specialist. You should see a Hepatalogist . Big hugs,

Interesting topic. I too, have experienced everything you have. Weight loss, loss of balance and some "brain fog" (not to be confused with confusion hahaha). All started when my Hep B started.... I went from 212lbs to 188lbs in a matter of 2 months, and lots of muscle loss on my legs.

I asked my doctor about this and he said that weight loss and loss of balance is usually not a symptom of Hep B but there has been discussion with "brain fog" and once I get treated, if the brain fog goes away then I'll know it was the Hep B doing it as the viral load goes down on tx. Thankfully, I'm nowhere near ESLD....

Almost everyone with liver disease have low platelets and portal hypertension. No onevI have heard of has had this not make them a candidatevfor transplant. Some ppl are down to 30k and still have one. Usually they pump you up before hand with transfusions.

Wildflower 66.

My partner had all the things you have. He has had Hep C since about 1969 and had all your same symptoms and levels. He almost died in 2010. He was hospitalized about once a month for one thing or another...kidneys, pancreatitis, sepsis, and more kidney failure. He got platelet infusions for a while because he was so very low.

But he too was not referred for transplant. We could'nt figure it out...and then he did. So long as he was actively drinking, and they can tell from your blood work even if you don't say so, he was not eligible, no matter how sick he was.

He quit drinking, took all the pills you are taking and began to feel somewhat better. He went to AA 5 times a week for 6 months, got listed, found out he had cancer also, and was transplanted 7 months after he quit drinking. That was the key for him. Now, 3 years later he is feeling pretty well, better every day actually because he is getting treated for the Hep C now! (Which came back after transplant...ugh.)

In addition to all your meds there is one call Xifaxan that helps the Lactulose work better. Mike was out of him mind with the HE, more than confused, he was in bad shape. That Xifaxan was a real help. It is expensive and some Insurance companies make you pay a HUGE copay. We got it covered by wriing a real tear jerker letter to the appeal folks.

I don't buy that you can't have treatment or transplant because of low platelets...demonstrate to these folks you are drug and alcohol free, are compliant with your medication, and, hopefully, have support at home to get through a rough surgery and/or treatment and I bet they'll change their tune.

Let us hear how that doctors appointment works out.

Mama Lama

Hi .ML :). Thank you so very much for all your information. I read and re-read all the responses and encouragement and it brings me to tears. I've felt so alone and frustrated. Really in a state of despair. I'm so grateful to have found the site. I am taking notes for my appt at UVA Friday and I'll be sure to update when I get back. Thank you again. All of you. I'm very humbled. Lisa