Hep C , End stage Cirrhosis

Hi ron zak 50 year old female, I will be 51 in 2 days. I am dx w/ non- alcoholic end stage cirrhosis and Hep C . I have been treated 2 seperate times for the Hep C..Interferon and riboveron and infergen and riboveron (cant spell), neither one was successful, I feel as I have kept a pfairly positive attitude. It has been 3 years since the treatments. The doctors say # dont matter, they go by systematic conditions. since treatment my viral load ,which started at 200,000 is now close to 3 million. Concerned with my amonia counts(from my pcp) Mayo started me on vifaxion, the levels did not go down, they actually showed some elevation. Mayo clinic added lactoluse to my regimen. My pcp did blood work 6 weeks ago and I reguested amonia levels, since i was feeling confused. My levels were at 288. I cant find anywhere on the internet that shows what a extremley high level is, My pcp seemed concerned, the transplant unit again advised that they do not determine anything by #'s, but determine through systematic condition. I have been a Meld score od 6 for two and a half years, last appt at transplant unit went up yo a 13. I got back to Mayo next week for my 6 mos. evauluation. I am scared, havent been this scared till recently, Wonder if my MELD went down, I feel that I am more and more physically challanged. Does every unit go by MELD score?? I cant sleep tonite, do not know what is making me over concerned, except maybe , my sister in law called tonite to advise she bought me an extensive sitting with a physic for tomorrow,Ive never been to one. (its a bday gift) I may be afraid of what she tells me???? Any feedback or support is greatly appreciated, this is the 1st and only site I have ever been on and i have no circle of support. I Love my kids . There so young, I dont want to leave them!!!

RonZak,

My brother had his ammonia level at 667, where he was nearly comatose. I know, Mayo said the same thing to us, they go by how you present, not the actual number. But he did suffer some kidney damage b/c of that and the fact that the weekend doctor (not from the liver team for some reason) restricted his fluids (bad move that doc admitted).

I get it that the level isn't something they test daily, even when doing the daily inpatient labs, but it was important to us to know if my brother was trending up or down. Encephalopathy came on so suddenly for him. As Connie said, the best treatment is the Xifaxan coupled with lactulose.

A bit of advice, if you think your ammonia is rising, take extra lactulose. That is what they do in the ER for EACH time my brother had it. They would start with 3 doses at once, then once an hour, then once every 3 hours etc. You cannot overdose on lactulose so better safe than sorry.

Are you having other symptoms, i.e ascites, vomiting, edema in the legs, esophageal varices, muscle-wasting, or jaundice? Do you live alone? Are you in a rural area?

The bugaboo for many, is that while they don't want their MELD to rise as it indicates progession, it needs to rise enough for transplant, if that is where you are headed.

I hope you have good results when you go for your check-up.

Come back often, there is oodles of experience and support in this forum :)

p.s. although your cirrhosis is not alcohol related, are you abstaining from alcohol altogether? This is vital for someone in your situation. Also are you watching your sodium intake, reading labels? You'd be surprised how much sodium is in bread, for instance. They recommend 2 gm of sodium a day, maximum.

BB , It will be easier for people to respond if you start a new post . There's a tab at the same place you found the reply tab , Just type a topic name in and then start telling us about yourself . As far as meds are concerned , are you seeing a doctor ? Try getting a appointment with a Gastro doctor if you can and then get a referral to see a Hepatologist . For that matter I believe a primary care doctor could get you a referral .

 There are a lot of different medications and a lot of different types of treatments for each type of specific disease , so giving us details on your condition would be a great start . There are lots of options like Medicaid and Medicare as far as insurance if you qualify . Some drug manufacturers  have assistance programs where you may pay no cost if you qualify .

 Ziff