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Avatar universal

Possible cirrhosis

Hi,
I have had hep. c genotype 2 for decades and in the past year have had symptoms of cirrhosis. Extreme itching, fatigue, ascites, edema, nosebleeds etc.
I don't have hx insurance but I went to a clinic that does trial studies for interferon and 2 new drugs shown to be very effective for tx hep. c.
The Dr. will do a biopsy but feels that I probably have cirrhosis which will preclude me from the studies at their clinic.
My question is, if I have cirrhosis can I get tx (elsewhere) for hep. c or is it considered too dangerous to subject a cirrhotic liver to?
Thanks
Best Answer
Avatar universal
damage done by cirrhosis is not necessarily permanent especially with successful treatment of the virus - only a professional can tell you if you have truly decompensated - physical indicators of decomp are just that - most can appear earlier in some cases - do you know your meld score - i know of a few people who are treating with decompensated cirrhosis and one is currently undetectable - not probable but possible
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1118724 tn?1357010591
Maybe this will bump it up a little ... My poor understanding of cirrhosis is, any damage done by cirrhosis is permanent. Curing the cause, HCV, stops the progression of cirrhosis, as long as other healthy steps remain in effect like, no alcohol, and a low fat diet. Decomp to comp is not an option, the liver has gone beyond the fail safe point.
Helpful - 0
Avatar universal
Thank you so much for your thorough and supportive reply.
I had blood tests done a few months ago through a county clinic. I will note just the abnormal results.
WBC 33, RBC 3.92 low but close to normal range according to my results.
MCH 343, Platelets-78 Neut % 38.1,
Lymph % 51.1 EOS% 4.3, NEUT#-1.24
Potassium 3.5, Chloride 111, Glucose 127
ALT 226, Carbon Dioxide19, AST 238, Alkaline Phosphatase 214, Total Bilirubin 1.9, Albumin 3.00 Total Protein 5.0
I am actually feeling better than I did then, less bleeding, itching less intensive.
Two questions:
Can one go from decompensated cirrhosis to compensated cirrhosis and what is the projected life expectancy for someone with decompensated cirrhosis?
Thanks again,
Rivll
Helpful - 0
446474 tn?1446347682

Hi.

" if I have cirrhosis can I get tx (elsewhere) for hep. c or is it considered too dangerous to subject a cirrhotic liver to? "

First you must find out if you have cirrhosis. And what kind of cirrhosis. There are two stages of cirrhosis generally. From the symptoms/complications you are having it appears that you have "decompensated cirrhosis". This is the more advanced stage. Are you taking medicine to manage these symptoms? Diuretics, lactulose, Nadolol, etc? If this is true you have "decompensated cirrhosis" won't be able to try treatment as it is considered too dangerous to your health to treat. So you must know exactly the status of your liver disease. If you have "compensated cirrhosis" (usually people have no symptoms except fatigue) you still have time to treat. So let the doctor do a biopsy. It is critical to know the results. It will determine your options in the future.

If you have "compensated cirrhosis"...
In the earlier stages of clinical trials patients with cirrhosis are usually excluded, But when they have the Phase III trials patients with cirrhosis will be included. So I would recommend letting the clinic know you. Talk to anyone you can, ask them if they will be doing the phases III trials or if they know who might. Since you don't have health insurance it is tough to get treatment.

If you have "decompensated cirrhosis"...
Your only option will be a liver transplant.

I don't know your financial and working situation. The problem is once you are diagnosed as having hepatitis C and cirrhosis it is almost impossible to get affordable health insurance. Are you working? Once you are diagnosed with cirrhosis if you can have a doctor say you are too ill to work. Then you should apply for Social Security Disability Insurance. SSDI. The good/bad news is you will qualify for Medicare in two years from when you are considered disabled by Social Security. I am on SSDI now.
Or you can apply for SSI if you have very little money and assets and you can qualify for Medicaid. I do not know too much about this process.

My point is, you will need some form of medical insurance if you are as ill as we believe you are. I am on the waiting list at UCSF here in the city for a liver transplant. UCSF in my humble opinion has the best liver disease treatment and transplant program in Northern Cal. I have been going there for 3-4 years now. My doctor is one of the leading doctors in the field of hepatitis and liver transplantation. My liver disease is "decompensated cirrhosis" (also known as End Stage Liver Disease) and I have developed liver cancer so the only option for me is a liver transplant. To be eligible for a transplant I had to prove to UCSF that I have $1,000,000 in insurance to be put on their list to be eligible for a transplant. Luckily I still have COBRA health insurance from my last job when I had to leave work because I was too ill to work any more. Needless to say, you have to be wealthy to afford treatment this without insurance.

Get the results of you biopsy and get a copy of the report. (VERY important!). Have you had any blood tests performed? Get copies. In California you have a right to all your medical records. You may have to sign a HIPAA privacy form, but that is easy to do. When you get your results post them here and we can assist you in understanding what they mean.

So let's not jump to and conclusions until we get the results of you biopsy. And then we will take it from there.

Hang in there. You are doing the right things now. Glad you posted.
Hector
Helpful - 0
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