What Do I Do Now!

I ready am not sure HOW I got Hep C, but in the early 1980's I had back surgery which required 6 pints of blood.As we know now there wasn't a test for Hep C in Blood then. Things have gotten worse for me, I have taken Hep C treatments 3 times now! All where different in one way or another, the treatments. None have worked for me and I have developed cirrhosis of the liver. It's gotten to the point that my liver is not processing my blood correctly and I've had a few secures because of build up of amonia (ammonia), low sodium and potasium. I was taken off interferon when I had my last secure which was really for maintaince untill a new treatment came out. Which I'm told won't be out for a few more years and there are no promises that they will work either. I have been taking Lactulose (2 tablespoons 4 times daily), Spironolaction 25 mg.twice daily and Furosemide 40 mg also twice daily at this point. Am I going about this wrong? I have been going to Doctors that are Hep C and Liver Specaltis. I'm not going to mention their names but they are in charge of famous liver clinics and Univ Hospitals. My health is going downhill fast. I can feel it. I'm tired, unstable walking, vomiting among other things. I'm never hungrey but eat because I know I should. I'm getting frighten over all this. I go through stages I think I'm feeling better but then in a few days I sick again. There now seems to be so much going wrong that I'm very confused, BTW I get confused lately too which I'm told can come from my amonia (ammonia) problem. When I had the secure my amonia (ammonia) was 3-4 times the normal count.My blood pressure seems fine too. Have you got any hope or something I can do to help myself. I'm at a lose of just where to go from here?

[HCA]

Sorry to hear of your health problems-so typiical of advanced Hepatitis C!
Have your doctors mentioned a liver transplant?
Your symptoms describe what is called decompensated cirrhosis and ant-viral treatment even with new drugs may not be the only option.
Livers are given to people who need them most using the MELD scoring system which you can look up on the internet.
The new drugs will be out in 2011 which is more like two years than 'a few years'
As you are seeing top doctors they should be able to refer you for evaluation for transplant at the appropriate time.
Hope things start to improve for you!

[FloridaMouse]

Hi Conch,

I had a feeling from your user ID that you were a fellow Floridian.  I was raised in Ft. Lauderdale (not far from you at all) and I currently live near Vero Beach.   I also got hep in the 80's but I'm a bit younger than you (I'm 49).   I have treated twice and relapsed both times.  I am in the beginning stages of cirrhosis and will be heading up to Shands at the University of Florida (I've been there before) on 7/21.

Whice Univ. did you get seen at, I'm going to guess it was in Miami.  Anyway, I just wanted to say your  not alone in the sunshine state.

Mouse

[newleaf09]

Check out the trials at www.clinical trials.gov.  It is not common to trial decompensated patients, but I have seen a few study results, so it's not unheard of.  It is possible to treat decompensateds with very careful monitoring but if your initial interferon TX was not successful, things may not be a lot different now (though basic treatment has improved with weight based riba dosing and peginterferon).  The protease inhibitors can get results in poor responders but they will not be available until late 2008 and you'd still have to find a doc willing to treat a very sick patient.  I'm so sorry you are in such a 'stuck' place.

About all I could suggest is bcoming fanatical about everything you come into contact with, like alcohol, NSAID's, cleaning products, pesticides.  I have heard of decompensated cirrhotics who quit drinking and backed at least out of decompensation back into compensation (which is a decent life).  Do whatever you can to take all stress off of liver and research all of your regular meds to be sure none can possibly be related to liver damage.  Good luck; keep hanging in there.

[Babs1469]

(((((((Conch))))))) All I can say is I hope you get some answers and to send you a big hug. Keep fighting, you are worth it!