What do I do now?

[sparks532]

I was diagnosed in Feburary with Hepititus C after being hospitalized with what they thought was a gall bladder attack. Since then a barrage of tests liver biopsy, several blood tests, several imaging scans and a diagnoses of stage 2 cirrohis of the liver. I was also diagnosed with diabetes that I never had before and their is no one in my family history ever having diabetes also high blood pressure. So there you have it a walking health disaster as to prior to that I seemed to be fine except for my physician thought I was going thru menopause. I have seen a Gastroenterologist strike that several in fact and they all say my only hope is to get on a research trial for this new protese inhibitor drug (not approved by the FDA yet) along with the standard treatment of Pegasys (interferon) injection and Ribiveron therapy. Yet I have been screened for the research trial and haven't heard a thing if I'm going to get in or not. The doctor just keeps saying to wait no news is good news they haven't said no yet.  How long should I wait it has been 8 months with no treatment what so ever. I'm getting worse more headaches stomach bloating with horrible pain on my right side rotating around to my back like a knife penetrating and turning. Nausea, vomiting, gray stools, and a loss of over 50lbs.  What should I do? Who should I see no one seems to want to help me? Worse is my husband has Hep C also no cirrohis and he was accepted into the research trial and is clear and almost done with treatment. He is getting upset that no one will help me and decidedly depressed that I will die and he will live.

[redrodeo]

Good for you, I has going to suggest exactly what texas714 did. Glad your husband is doing well. I just got my 6monthSVR report. So there are alot of success storys.
Red

[sparks532]

Thanks for your input. I did cut back on salt & protien this has helped tremendously with the pain. I found a new Doctor and I'm starting treatment on Monday. Very excited about this they have had great success. My husband is already Virus Free and even on medication is feeling great. Doctor says the Liver will repair itself after the Virus is gone and keep a healthy lifestyle. Thanks for the encouragement I'm ready to fight. Will keep you posted of my condition and success with the new drug.

[mar148]

I would see another liver doctor.  I am confused because the symptoms for hep c are usually (not always) as extreme as you are having, considering you say you are stage 2.  I would go to another doctor who may run more tests, including an actual biopsy.  I don't understand why they are not starting you on treatment and suggesting you do a research trial?  I successfully completed treatment and hope you get the care you need soon.

[Texas714]

Maybe another dr. would be more aggressive in getting you in the trial.  You could also speak with someone about standard treatment I would think.  You might have better luck with a doctor at a university in getting enrolled in a trial.
I don't know a lot about trials...I've never been in one or tried to get enrolled in one, but a lot of people here have.  I'm sure you will hear from some of them soon.
I'm sorry to hear of your trouble.  Has your doctor told you to cut back on salt and maybe meat?  I have cirrhosis too and that's what I have done for myself.
Good Luck to you, I hope you get in your trial and will let me/us know how it worked for you.  It seems like I may have to try that next, soc didn't work for me.