An HCV survivor who never had HepC - Hepatitis C Support

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An HCV survivor who never had HepC

bbgoode
bbgoode

No never had HCV. I lost my wife Carla DEC 28 2008. Since 2009 a member of Hepatitis C Family and Friends Support Group. Admin for 4 year. This is my life now in honor of my Carla. So often we hear of post treatment health issues, often blamed on the new DAA treatments. I find it dismaying that so many seem apparently believe that after being infected for decades by this virus which by the way was never dormant, it has been boing it's dirty job since day 1 of infection. It never slept but post acute stage it his what it was doing, its a stealth virus. Once damage is bad enough the bugs can no longer hide what it has been doing, often at that point liver transplant is a given. But for so many others who feel fine when diagnosed and begin treatment they begin to feel many varied health issues. They find it much easier to blame the drug that cured the virus instead of the virus that has caused so damage in almost every cell in their bodies. Its easier to blame something tangible, something and someone e they can see and touch. The virus is dead so it can't be causing so many issues right? Wrong. Yes you are cured, cured of the virus not the damage already done. Harvoni,Zepatier or any of the DAAs never claimed it would cure your liver,joints,pulmonary or any other issues the toxins that passed through your compromised liver. I saw first hand so many of these health issues affect my Carla who never had any treatment. I watched these same issues take my Carla. Yes you have health issues but put the blame where it belongs, hepatitis C, also known as the silent killer.

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Hi bbgoode,

I'm sorry to read you lost your wife Carla to this virus.

Thank you for posting.

It's an admirable crusade and, for me personally, a very thought provoking post.

May I ask why Carla never had treatment?

I've had hep c for 30+ years. I consider myself lucky in that I only have mild fibrosis. I do have other health issues which may or may not be due to hep c, like arthritis and digestive problems, but on the whole life's bearable.

I turned down the old regime of interferon/ribavirin after it left two of my friends with worse health problems and didn't even cure their hep c.

I was up for the new treatment though, right up until the time came to actually take it, then I looked online & chickened out.

Having said that I had to search quite long to find something bad said about DAA's (a couple of possible cancers and, ironically, liver damage) it seems generally to be a much better, safer treatment than the old regime.

However I'm still terrified to take them.

I think I'm afraid because they're new, worried that I've had the virus for so long my bodies got used to it and more harm might come from suddenly taking it away, like developing cancer, or that I'll be in general worse health after.

bbgoode
bbgoode
in reply to Frasim

Hi. Carla was ESLD Stage 4 cirrhosis and given 2 years to live at diagnosis. Then as you know there was only interferon based treatments available. Carla was never really healthy enough for the old tx's, that and like you we knew the terrible effects both during and post treatment. She felt quality of life was preferable if ultimately the virus and already done damage was going to take her anyway. If she had received the liver transplant maybe she would have lived long enough for these new drugs.

As far as your worries regarding possible side effects of the DAAs please realize that every drug, medicine, herbal and vitamin supplement all have their own "possible" sides. Yes you hear about the unfortunate issues some, a very small % of those taking DAAs have had. You don't hear of the millions, and no that is not an exaggeration that successfully have treated with few if any side effects. And most of those post treatment health issues are not due directly to the treatment meds. Most have been infected for years, decades. In that time the beasts have been quietly do their damage, damage throughout the body. Once gone the patients feel just how much damage has been done, plus the meds do not say they cure that damage, only the hepc virus. If one is unfortunate enough to ha e serious health issues post treatment often its just a matter of some time, be it short or long for their body to heal. Its been in a war for decades and it will take time to heal completely. I've been a member since Carla passed of Hepatitis C Family and Friends Support Group and an Admin for over 4 years now. For the past year I've also been an Admin for 9 HepC support groups sponsored by the Bonney Morgan Foundation for HCV. A non profit. Today I was asked to also admin another group which I agreed to. This is what I do now. I'm retired and other the work around my home or in my gardens HCV is my life. I do not get paid or receive compensation of any kind, I do this to honor the life and death of my Carla. Please please get treated, the longer you put it off the more liver damage and the greater chance of developing liver cancer. Search facebook for Hepatitis C Family and Friends. Its a worldwide support group with a unbelievable amount of personal experience and a files library filled with up to date well. Vetted links and info all HepC related. GET TESTED, GET TREATED, GET CURED. NOT WITHOUT A FIGHT.

VeeWat
VeeWat
in reply to Frasim

Long-term follow-up after cure from chronic hepatitis C viru... : European Journal of Gastroenterology & Hepatology

journals.lww.com/eurojgh/Pa...

year=2019&issue=04000&article=00014&type=Fulltext

————————-

I’m afraid too. Especially after reading this.

bbgoode
bbgoode
in reply to VeeWat

VeeWat have you been treated yet. If not I can only say what I've said to so many in my support groups, please don't let the "What ifs" cause you worrys and anxieties to a point the fear freezes you into not getting treatment. If in the rare chance you have some more serious post treatment health issues of HCV, they are no where near as bad as those last few months and weeks of life if and when HepC takes your last breath. Think about not only your own pain and agony but the pain and agony felt by you loved ones as they watch those the terribleness of your passing. That pain and grief lasts so long, for myself it was 9 years of debilitating grief and pain.

bbgoode
bbgoode
in reply to VeeWat

I have been trying to read the article you referenced with out snuck. The want farbto much. Could you give me a basic idea of what the article said?. Thanks.

bbgoode
bbgoode
in reply to VeeWat

Thank you. I appreciate the work around allowing me to read the article. May I ask what nation you are in? What treatments are available to you? Only INF Interferon based treatment or are the new DAAs now used? I know there are a few countries where the only avail. treatment is INF+Ribaviran, Cuba for example.

If you noticed all the patients in the study were treated at least once with INF between 1990 and 2005. Personally I'm surprised the number of problematic patient was so low. They also were only using those who completed treatment with INF. There were many pulled from treatment within a few months of start of treatment (SoT)due to serious health issues caused by INF. Very few are treated with Interferon base treatments today since the first real DAAs, Harvoni was approved in Oct 2014. With the approval of Harv. followed a number of other DAAs over the past 5 years. The most recent two, Epclusa and Mavyret are effective on all genotypes any a high efficacy in treating those who past treatments failed. Mavyret has a near 100% cure in a prescribed 8 week treatment in non-cirrhotic treatment naive patients. This study did not include DAA treated patients. There is a high confidence in the lasting SVR following DAAs with No Relapses following SVR. There have been a handful of reported positives post 24 week SVR but those have been attributed to re-infection, not relapse. When you follow any of the support sites including the Top HCV Support group, Hepatitis C Family and Friends you will see what's seems quite a few posting about mild to debilitating post treatment health issues saying they are due to the DAA treatment they underwent. You will find groups specifically for those with post treatment health issues. As yet none have have been proven as a direct result of DAA trtmt. Those issues are the result of 1) hidden damage done due to years and decades carrying the the untested virus and 2) what are found to be the result of already present damaged genetic issues awakened by the virus and 3) the simple ageing process.

We now know the virus at that acute to chronic change at 6 months post infection has a what is called "Ghosting" effect on our immune system. It hides from the anti-bodies produced to fight the virus allowing the little beasties to continue there work at damaging not only the liver tissue but along with the unfiltered toxins pretty much every cell and organ in the body.

Many can live a long life and pass away off natural causes having little physical signs of having been carrying the virus for most of their lives. HCV is very personal affect each victim in its own way. Today refusing treatment for fear of the what might be is like playing Russian Roulette. I can say after caring for my Carla, holding her hand in tears in her final 3 weeks and feeling her last breath as I kissed her goodbye you do not want to delay treatment.

GET TREATED GET CURED

NOT WITHOUT A FIGHT

Thank you for saying these things.. You are right. I totally see your point of view. I am suffering post-treatment symptoms, And thought that same thought. I have been living with a virus in my body for 40 years.. and then I killed it. of course there is going to be a change in my body, makes sence. thanks for sharing this.