Down n Out? Need to vent

amy · Oct 22, 2002

I hear your pain... my handsome hubby of 6 mo. also Hep C positive. We've been together 4 years, and he refuses interferon therapy. However, his LFT's are WNL and only slightly elevated once before we met (thank god). He has heard from others how sick interferon can make you and won't take it. Hope all turns out well for your son-in-law. How long has he been infected? Has he had a liver biopsy to determine degree of liver damage? Hubby refuses biopsy too. Can't force him to do it, but know that I give him one H*** of a time with every beer he has!!! And he doesn't have that many! LOL! But, good luck and keep us posted!

Vsummer1 · Oct 22, 2002

Just a reminder....

Many, many people with Hep C are NOT progressors. They live long healthy lives and never need treatment. However, without a biopsy you will never know if you are one of the progressors or not. Without a biopsy you will not know if the liver is damaged. This disease takes 10 - 15 years to do damage IF you are a progressor. Alchohol and hep c are best buddies... they absolutely LOVE each other and are symbiotic when they start munching the liver. Abstinence is seriously needed with this disease because of this relationship.

Viral load is not a factor like it is with AIDS. Liver damage is the gold standard of how a patient with Hep C is doing, and again, a biopsy is the only way to tell. It is a simple outpatient procedure.

I assume that since your SIL only did 6 months of tx that he is NOT a type 1... if he was the standard protocol w/ have been 48 weeks. Genotype 1 is most prevalent in the US, is least likely to progress and is hardest to put into remission.

They say there is no CURE, but only because the first reliable test for the virus came out 10 years ago so they don't have enough long term data. There is a 40% chance of remission for genotype 1's. During treatment the virus is usually held at bay and the liver can repair itself so even if a not a sustained responder, a positive is that the liver got a rest. Sooooo, if your SIL refuses to do tx again (and I am assuming it was peg w/ riba he did) at least you have that going for you!

I am a progressor, DH is not. I did the 48 weeks, before peg came out. I am now in remission for 2 years, negative by PCR. DH has no signs of progression, thus no need for tx. After seeing how horrible it was for me, he has no desire to do it either!

REMEMBER! So few people who have it really ever get to end stage HCC!! Soooooo, how was your SIL's liver biopsy after tx?? Is he still progressing or has it been stopped -- that is the important question...

Home Health Columnist / Guide · Oct 22, 2002

Moving post to General Discussion for wider viewership/support.

Not my area of expertice. Hope others can shed some insight. Thoughts are with you.

NurseDianne, ADN · Oct 22, 2002

Thanks for the comments and thoughts. My SIL has been dx for the past 2 yrs. Had the Liver Bx.......all that good stuff. At first he did not respond to Peg/rib.......it was around 5 months of tx that his levels began to decrease. Like I said eariler....dropped to the 100s........now 5 months later.......greater than 600,000 (approx 650,000)

I just don't know what advice to give them. They are both young. He had a rough time w/ the tx making him so tired. He hung tough and didn't even miss any work. Just felt like crap. I understand as a newlywed he doesn't want that w/ my daughter. She's so worried. And I just don't have any answers.

Vsummer1 · Oct 23, 2002

It is really hard going down this road! Believe me, I know and I wish I had something profound to say that would make it better, but the fact is I just don't! I am sorry.

They are doing research and new drugs are being tested as I type. Since it is a relatively "new" disease (or at least they only were able to isolate the virus recently) there hasn't been anything except the interferon approved for treatment. As I am sure you know, the side effects are terrible and the efficacy isn't great either.

We all hope and pray that the millions affected by this disease will be offerred a therapy soon!

I can tell just by the fact that you posted here that you care deeply and will be of enormous support to your daughter and her husband. That in itself is wonderful, because so many people don't even understand HOW this is transmitted (i.e. blood / blood) and fear does funny things to people. EDUCATION is needed, and people like you and I can do at least that!

kids · Oct 23, 2002

{{{everyone}}}

Val- thank you for the info on Hep C. I have set out to research it and always get mired down by the technical info (LOL...and I read Mosby's and Smiths for fun).

I had a very good friend who received blood following a uterine hemmorage in 1975 and contracted Hep B. In 1985 she was hospitalized with sx of liver failure. 1990 after uncountable tests and hospital admits she was finally told that she had what looked like hepatitis but that all of her tests were negative. She died of complications following a liver transplant in 1991.

Makes ya go hummm...

Vsummer1 · Oct 23, 2002

I posted on a new therapy which was approved last week!! Geesh, I hadn't checked my email.

Before they came up with a reliable test, this was just called Non A / Non B hepatitis. They knew about it, but couldn't really pin it down.

I am so sorry to hear about your friend. I can understand your frustration, as I have lost many, many friends to Hep C. I joined so many online BB's as well as face to face support groups. I rarely even go into them anymore, it got to the point where giving my support to others was taking a toll on my recovery. Every time someone would die, I would be so upset and I knew that wasn't good for me. So, I stopped going in order to heal myself first.

I know of only ONE other person from my original group in 1999 who has had a sustained response, so the guilt of that was hard for me too. The "I didn't die, but so many did" type of guilt. The best I can do is to go on with my RN studies so that in the future I can lend my support that way and try to educate. Many people out there (like judge judy on her show, on tv!!!) think only IV users get this! That sure isn't how I got it, and many others who had blood transfusions or are in the healthcare industry didn't get it that way either!

NurseDianne, ADN · Oct 24, 2002

I acutally did my term paper on Hep C because folks as so damn stupid about it. I went to give blood 3 semesters ago.......and was told that since my SIL used my bathroom and ate off the same forks at we did (regardless that they were washed) I could not give blood. I was very angry and got more than a little testy w/ the Red Cross staff. The next morning they called me from Atlanta wanting to know what the problem was. So.....to make a long story short......after talking to 4 different folks and finally getting a medical supervisior, I was issued an apology and reinstated to give blood. (ok, my thing was,...THEY are suppose to be an authority on this subject).

Anyway.......the next semester I give blood.......everything went smooth. Last month......I get a letter.........My Hep C test came back positive........hmmmmmmmmmmm..........I went to my family doc, had test rerun.......they are NEGATIVE. But will the Red Cross take me blood ever again.....HELL NO.......

But get this........several people in my class all gave blood the same day, got the same letter and all retest NEG. Something sounds kinda strange w/ the testing system that was used....

OK......my vent for the day

I really do appreciate all of yall's input.

Vsummer1 · Oct 24, 2002

I understand that! These are things I will NEVER be able to do because the antibody test comes up postive, but the PCR for the actual virus is negative d/t tx:

1) give blood

2) donate organs (unless recipient is hep c postive also)

3) get health insurance

4) get life insurance

On the insurance, the only way I can get coverage is through group policies. I have tried individual policies, and they won't take me even 2 years with no virus. Sooooo, I must use community health services offered through my college if I get sick, and that isn't really coverage is it, just a clinic for sore throats!