Diagnosed with Hep C and cirrhosis and I know so little

[Nina Mae]

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.

[Lynn K]

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.

[Nina Mae]

Thank you,Lynn, for your warm welcome and back story.

[KimInTheForest]

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

[Nina Mae]

Okay, so I just remembered that F4 is the 'stage' of cirrhosis and the '44' was my fibroscan score perhaps?

Does anyone actually know what tools or test results measure whether a person is  'F1 or F2' and so on?

Or is it 'staged' by what a radiologist or GI see on images?  My fibroscan could have been 44 that day but I bet it's less than that now.The diuretics and staying under 2000 mg sodium daily must have a positive effect on things.

It's just been a really tough time for us on so many levels and we've gotten back on track again.  You know when we hear of so many serious issues just about within a few months, it throws one off...sort of like losing your balance.  But once things sink in one can start thinking pragmatically, and like Kim expressed, one can prioritize and tic things off as we deal with them. My nephew was dx'ed around the same time I was dx'ed with with a very rare disease (Transverse Myelitis).  Our 15+ yr dog was dx'ed with bone cancer (started in his mouth) so it's been rough.

Thanks for your help and kind, encouraging words again!  Stay well!

[Lynn K]

The tests that are used to determine your fibrosis score F0 through F4 are the liver biopsy, the fibrosure blood test and the Fibroscan.

Ultrasounds look at the general condition of the liver, the direction of blood flow through the the livers main blood vessel the portal vein, and especially for suspected liver tumors.

Here is a link to the information about the scale conversion of fibrosis scores to fibrosis score

https://www.uhn.ca/PatientsFamilies/Health_information/Health_Topics/Documents/FibroScan_Liver_Disease.pdf

The table varies a little based on the cause of cirrhosis for hep c any score above 14 is considered cirrhosis. The scale goes as high as 75.

My pretreatment cirrhosis score was 27, one year post was 33 and this year at 4 years post it was 29. There is some variation in testing technique so basically my scores are more or less unchanged so far.

Hope that helps

[Nina Mae]

Thanks Lynn!

So I have this straight, the fibroscan measures the amount of scarring and in addition to other tests, to see how much scarring there is on a liver.  So if you've been dx'ed with F4, what difference does it make that your fibrosis score may be 33 or 29 or 44, in my case? 

It doesn't make very much sense to me now as they seem to be measuring the same.  How can a fibroscan in conjunction with blood work can be a liver biopsy.  Any biopsy I've ever had or ever heard of, a small amount of tissue is removed from the organ to be actually analyzed.  Interesting.

Lynn, what bearing do the platelets play that we should be monitoring them?  What do the platelets numbers demonstrate and what role do they play?  The more knowledge, the better in all situations..  This is a biggy and I need to wise up.

[Lynn K]

Ok so let me just say I’m not in the medical field I’m just another patient so grain of salt, right?

So the Fibroscan makes a thump that returns back to the probe to estimate liver stiffness. A liver biopsy as you said does only take a small sample sometimes a couple of places but as you said it can be subject to sampling error but before we had Fibroscan and Fibroscan sure it was considered the “gold standard” to diagnosis cirrhosis. In fact biopsy is still considered the gold standard as Fibroscan is dependent on operation experience and variation between operators and is less accurate in mid range damage (F2, F3). The Fibrosure blood test is also an estimate and is also less accurate in estimating mid levels of fibrosis damage. The advantage of Fibroscan and fibrosure over liver biopsy is they are non invasive so much less risk to the patient. I had 4 liver biopsies one every 5 years going from F1 to F2 to F3 and finally F4 January 2008.

My score differences could easily be operator variation in technique so essentially my results are basically unchanged. Your 44 does likely mean you have a little more scarring than me but I guess the only way to know would be for me to have the same technician with the same equipment perform the test on me for comparison.

Not sure what specific blood tests you mean. If you mean liver enzymes they have no relationship to the amount of liver damage you may or may not have. Having elevated liver enzymes only means that something currently is injuring your liver.  People can have very high liver enzymes and no liver damage or like myself they can have normal liver enzymes test and have liver cirrhosis. I have normal liver enzymes now because my liver is no longer being damaged by hepatitis C.

As far as platelets, when the liver becomes more and more scarred the main vein in the liver called the portal vein will begin to have increasing blood pressure called portal hypertension. This is unrelated to the blood pressure measured on your arm. This portal hypertension is a symptom of advancing cirrhosis. Portal hypertension causes the spleen to enlarge which in turn causes the spleen to sequester (hold onto) platelets which is why we have low platelet counts. My platelets were about 80 before I treated and now 4 years later they are about 125 still below normal but improved so I’m thinking this means maybe I’ve had a small reduction in scar tissue resulting in a reduction in portal hypertension.

Another thing portal hypertension causes is the blood vessels in the esophagus (swallowing tube) to enlarge.  These blood vessels can become dangerously enlarged with time which can result in a dangerous bleeding event. This is why we need to have upper endoscopies to check for these dangerously enlarged blood vessels called esophageal varices. On my 3rd upper endoscopy my varicies had become large enough (grade 3) where I needed to have them banded so I had 4 upper EGD’s over 4 months to band the varicies. That was back in 2012. I was having upper EGD’s every year until 2017 to make sure the varicies didn’t return now my doctor has said we can do them every two years.

On my upper EGD’s they were also seeing inside my stomach something called portal hypertensive gastropathy but on my upper EGD  this year there was no longer any sign of the gastropathy so another indication my portal hypertension may be improving.

Hope this helps