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Author Topic: Diagnosed with Hep C and cirrhosis and I know so little  (Read 1799 times)

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Offline Nina Mae

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Diagnosed with Hep C and cirrhosis and I know so little
« on: February 08, 2019, 02:17:50 am »
I'm 66 yo.  I'm a breast cancer survivor (2003); I had a heart attack with stent implanted in my LAD (2009).  My spouse and I have been together for 18 years (since 2000).  We would drink on occasion; used no drugs.  Was a caregiver to both my parents from 1996...never had a drinking problem nor a drug problem; I couldn't be an IV user anyway because my veins are too tiny and deep and nurses constantly miss.

As far as Hep C, I may have gotten it back in the early '80's...clinics were paying people to donate blood and we were young and broke always but I remember clearly that the place didn't look so sanitary and of course, the nurse(?) couldn't get my vein so she continued poking me until she gave up and I got bad vibes.  Or I got it from TB air gun vaccinations/boosters in grade school where they'd go down the line and inject as many kids as possible with the same gun...or I got it in a dentist office where equipment wasn't sanitized well?  Who knows...

Since 2009, I lost over 60 lbs and got into a consistent workout program where I'd go to the gym 3-4 days a week on average.  I became a vegetarian and stopped all fast food, sodas, etc.

 Two weeks before I got violently ill, I had just told my spouse that I haven't felt better in my life and the only regret I had was not starting this lifestyle sooner.  Evidently, I had an acute stomach virus that triggered everything off.  After 2 weeks of violent vomiting and diarrhea, the edema showed up to the point that I gained 27 lbs in 2 weeks; couldn't eat or drink because I was so bloated.  Ultrasound done in Oct; liver damage present with early to moderate cirrhosis present due to some ascites.  Referred to hepatologist who ran all blood tests and found reactive Hep C.  Mind you, back to the breast cancer in 2003, one of the chemo drugs that was administered to me was Adriamycin which is one of the chemo drugs that more and more women are now presented with liver damage/cancer.  Additionally, somewhere along the line, I was diagnosed with fatty liver disease so there are three etiologies my poor liver is contending with. 

I had a colonoscopy in December and had 5 polyps removed but hemorraged the next morning because one polyp was big and it opened up so I had to have an emergency scope the next day  :-\

Then in January, I had an endoscopy and found out that I have one 'very mild' esophagael varix that is being treated with Naldolol.  I have an umbilical hernia too. 

So after all these years being asymptomatic of everything liver related, not only do I have hep C, but I have a decompensated liver with a 'not so hot prognosis'?  How does a person deal with this?  My spouse and I are loners; had a few friends but most moved away. 

My spouse tested negative to Hep C (thank goodness) and I'm retired because I wasn't feeling well but didn't know what was wrong.  Both diseases come with terrible stigmas and people get weird about illness anyway so I'm mostly closeted about my conditions; I'm afraid the few 'friends' we have won't be so understanding.

I feel isolated and alone.  My spouse can only listen to so much.  I'm in Canada and called the Canadian Liver Foundation's peer support group to hopefully meet people who can relate and won't judge me but they never called me back. 

My Hep C  Meds are in process of insurance coverage and once we get the 'go ahead', I'll be  able to start treatment and put the Hep C behind me (I hope) but there seems to be so many delays and I'm becoming increasingly nervous and depressed.

The only thing I know about my hep C is the genotype which is 1a.

Sorry this is so lengthy; I don't know where else to turn.

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: Diagnosed with Hep C and cirrhosis and I know so little
« Reply #1 on: February 08, 2019, 03:21:26 am »
Hi Nena Mae and welcome

If it helps at all my story is I was probably infected with hep c in 1978 and learned I was infected in 1990 when I donated blood. I treated with the old interferon based treatments three times but I had no response to treatment. After being infected for 30 years I was diagnosed with liver cirrhosis. That was January 2008. Six years later in 2014 the new generation hep c meds were first being approved and I treated with Sovaldi and Olysio but relapsed 12 weeks after I finished treatment. Then in the fall of 2014 Harvonibwas approved and I treated with Harvoni for 24 weeks and later also added ribavirin for 15 of those weeks. So after 37 years of infection and a diagnosis of cirrhosis for seven years at the time I was finally cured of hep c.

Right now I have been free of hep c for almost 4 years and have had cirrhosis for 11 years. I will be 61 this March.

I haven’t had near the medical challenges you have but just wanted to let you know you can beat hep c and with care survive with this amount of liver damage. I do need to lose some weight as I am starting to have issues with fatty liver but other than that I’m doing ok.

They say with cure our livers may even improve with time but I tend to think it may depend on how much damage you already have. I had a Fibroscan today and my result was 29 which is not really changed from my pre treatment Fibroscan of 27 or my one year post of 33 but my doctor reminded me I’m not getting any worse which probably wouldn’t be true if I still had hep c. My platelet count has risen a little from my pre treatment numbers of around 80 to now around 125 so maybe I have had a small improvement.

Best of luck on treatment and again welcome I’m sure you will find friends here sharing their treatment experiences and support with you.
« Last Edit: February 08, 2019, 03:41:52 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!

Offline Nina Mae

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  • Posts: 2
Re: Diagnosed with Hep C and cirrhosis and I know so little
« Reply #2 on: February 08, 2019, 03:33:02 am »
Thank you,Lynn, for your warm welcome and back story.

Offline KimInTheForest

  • Member
  • Posts: 1,927
  • Believe in yourself
Re: Diagnosed with Hep C and cirrhosis and I know so little
« Reply #3 on: February 08, 2019, 12:15:28 pm »
Hi Nana Mae. And welcome. I'm in Canada too - Nanaimo.

I'm sure you are overwhelmed at this point. But it's best to break the problems down into smaller pieces (Hep C, cirrhosis, stigma, being closeted, other health issues) and address each one independently. Because some do have straightforward solutions. And things will look better once you start to make headway on any of the problems.

You are virtually guaranteed to be permanently cured of the Hep C with a few weeks of oral pills, which for most people do not cause serious side effects or distress. So that will be a huge victory right there!

I lived with Hep C for about 45 years (age 15-60). Was cured with the new drugs in 2015, but have been dealing with 2 separate cancers ever since - chronic lymphocytic leukemia (CLL) and anal cancer (caused by HPV virus). I have been treated for both and am currently in remission for both.

On the issue of stigma and not disclosing, I didn't disclose my hep c status for the 45 years I had it. But I did disclose upon being cured - partly because I wrote a book about it and you kind of have to disclose to let people know about the book ! haha ;) . The day I disclosed my Hep C (by posting on facebook, twitter and my blog - so the whole world knew all at once), I was walking through the supermarket and felt 10 feet taller. A huge weight had been lifted from my shoulders that I had never realized was there all these years. Strangers who didn't know my story were telling me how great I looked - because I felt that much greater after disclosing, apparently. Anyway... just saying something here about the invisible weight on our health of holding secrets. Sometimes we don't calculate that because we don't even know it's there.

When I became very sick and disabled with my 2 cancers from 2015-2018, at first I didn't disclose that news either because I didn't think it would help my healing and recovery to been seen as the "cancer person" and have all my friends relating to me on that basis. I needed people to see me in a positive strong healthy light, to help me get back to that space myself. But because I live alone, and because I really was very disabled from illness these past 3 years, I ended up going public on my 2 cancers as well. And that proved to be very helpful. I needed lots of assistance with rides, grocery shopping, sometimes even meal prep and garbage-emptying when I couldn't leave me bed. And there were always plenty of people available to help because I was crowd-sourcing my logistical needs on facebook.

So even though it is scary, unpleasant and counter-intuitive to 'out' oneself with serious illness, in my own situation it proved to be the best course for me. And as for those people with a bad attitude to illness - I'm glad to find out who they are so I can kick 'em to the curb. Don't need them in my life on my healing journey.

Good luck to you!

Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/


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