Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
Hi -
I'm and old guy who probably got Hep C in the 60's or 70's using drugs in Vietnam and Southern Cal. I didn't find out about it until 1997 when I was admitted to the ER for a kidney stone.
I had moved to NorCal and started going to a Gastro-Enterologist and slowly got sicker and sicker developing Cirrhosis. I blew out my varices a few times, and was hospitalized at UC San Fran for SBP Spontaneous Bacterial Peritonitis where belly fluid (Ascites - which builds up from the liver disease) gets infected.
I was a mess, but still working every day, then in 2004 I finally received a transplant from my brother in law who donated 2/3 of his liver to me.
I am now going on 11 years with the new liver and still feel great! I get my labs every month and INR, Protime, Bilirubin, Creatinine, AST, ALT are always perfect, never elevated or low.
It's all God!
My last trip to UCSF for a checkup and the Post- Transplant coordinator mentioned the new drugs like Sovaldi that I could take to clear it out of my system but she said I would have to be in worse shape for my Insurance (Medicare & Tricare) to pay for it.
I went through that with waiting to go on the transplant list and heard that you have to be on death's door to get a liver. I am not goin g to go through that again if I need the drugs.
My question is: I know they cost about 80K if you pay for the treatment on your own. Is there any way to reduce the cost ? I am willing to make payments of a co-pay but not 80K
Thanks,
Allen
I'm and old guy who probably got Hep C in the 60's or 70's using drugs in Vietnam and Southern Cal. I didn't find out about it until 1997 when I was admitted to the ER for a kidney stone.
I had moved to NorCal and started going to a Gastro-Enterologist and slowly got sicker and sicker developing Cirrhosis. I blew out my varices a few times, and was hospitalized at UC San Fran for SBP Spontaneous Bacterial Peritonitis where belly fluid (Ascites - which builds up from the liver disease) gets infected.
I was a mess, but still working every day, then in 2004 I finally received a transplant from my brother in law who donated 2/3 of his liver to me.
I am now going on 11 years with the new liver and still feel great! I get my labs every month and INR, Protime, Bilirubin, Creatinine, AST, ALT are always perfect, never elevated or low.
It's all God!
My last trip to UCSF for a checkup and the Post- Transplant coordinator mentioned the new drugs like Sovaldi that I could take to clear it out of my system but she said I would have to be in worse shape for my Insurance (Medicare & Tricare) to pay for it.
I went through that with waiting to go on the transplant list and heard that you have to be on death's door to get a liver. I am not goin g to go through that again if I need the drugs.
My question is: I know they cost about 80K if you pay for the treatment on your own. Is there any way to reduce the cost ? I am willing to make payments of a co-pay but not 80K
Thanks,
Allen
I was told by my Gastro before surgery that it's not a question of if the virus comes back, the question is when. At UCSF they tole me most patients are back with Cirrhosis within 7 years. I have 11 years with no problems and it's God in my life keeping my liver healthy
I just want to be ready if the time comes and the labs get bad. I think my
It can't hurt - why wait for something to happen?
I feel this virus is so tricky, I walked around for years with a viral load
of under "4: and no elevated ast/alt and one day "booM' I was sick as a dog....
The rest of my body has suffered more than my liver from the disease.
God got you this far he will take you further!
Prayers
Bill
Look I'm 17 yrs post transplant liver, and I've been on various forms of treatment ever since there even was a treatment and none of the treatments worked. However, I kept on fighting. Sure I got sad and discouraged, but got over it each time and regrouped to go fight it again and again until one day after trying without success to get into a clinical study, I go accepted into a Gilead study for what we now know it as being Harvoni. and bata bing, bata bang, bata boom! HCV was history - no longer inside of me!
WHY? Because I never gave up! we're both cut from the same cloth man! So pick yourself up from your bootstraps and don't take no for an answer from now on! I'm going to go through my own resources of info that may help and will post them up ASAP! So stay POSITIVE cuz help is on the way!
Kathy
Once my GI doc knew I was ready for treatment (my Viral Load has consistently stayed at about 12Million+ the past 8 years & was diagnosed in Nov 1997, got thru blood transfusion in 1981 at Alta Bates Hospital, Berkeley). Once it was 50million due to being on a crapload of Pain killers in '07 (off now cuz I got spinal cord stimulators).
Anyway, I applied thru PANF once my GI doc gave the go ahead - Patient Access Network Foundation, which is another entity that Gilead (maker of the Sovaldi & Harvoni) apportions out meds to (from best I can understand it). They pay for everything 100%, but it does run thru your insurance as a matter of Administrative Compliance (legal-schmegal crap). But I'm glad they do, as I'm on Medicare with AARP/United H/Care Supplement), so now, I'm in Catastrophic Category, making all my other meds very cheap from here to end of this calendar year! Yippee!
I'm not sure you could get a Grant, however, if your own doctor says you'd have to be sicker. What's your Viral Load? I ask cuz my AST/ALT have almost always been within normal range, unless I was on Anti-Depressants or Pain Killers for my herniations/nerve pain, over the years. My suggestion, even though you're going to UCSF, is to get a 2nd opinion outside of their system. I used to see Dr. DeNegris up in Petaluma ... best of luck to you.