In complete shock!

[Shdwsldy]

Right before Christmas my husband was diagnosed with HCV.  It's been one h*** of a roller coaster since then.  We were just finanlly getting to the point of having aborbed so much of this new information and situation mentally and emotionally.

To cut to the chase, about 2 weeks ago my husband was sent to UNC in Chapel Hill, NC for a liver biopsy and monitoring because his billirubin reached 20 at a very rapid rate.  Yesterday we got those results back.  Keep in mind that nothing has shown up on ultrasounds, catscan, MRI, and all other liver function tests.  This biopsy came back as stage 4 cirrhosis.  The reason that they say it was undetectable by other means and  "hidden" was because there is only minimal inflamation.  They don't believe that this severe cirrohis is because of what I call "early adulthood social drinking"  but rather that his immune system has been fighting something else for a very long time.  They are baffled by his highly functional liver in this state.  And now they believe that the HCV is even more recent than the 2-3 years they origionally suspected and more like even 3 months or so.

I dont believe either one of us is handling this news very well considering the future implications of a transplant at some point.

[Advocate1955]

Shdwsldy, well,it is clear that he does have Hep C, genotype 1b, whether it's a recent exposure now turned chronic or an older exposure that is chronic. If his liver is compensated, he should be able to treat using one if the triple therapies (interferon, ribaviran, and either Incivek or Victrellis). His chances of curing his Hep C are higher now than ever before in history. If his liver is decompensated, his hepatologist may decide he is too ill to be able to handle treatment as the meds might cause his liver to fail. Best wishes, and keep us posted.
Advocate1955

[Talia429]

My husband was diagnosed with Hepatitis C in 2011 Genotype 1a.  It has been a rough miserable past 2 years for our family.  We have friends and some of our own family members that don't believe how sick he is.  I am glad I found this website.  It was the support that we both needed.  There are people on here that genuinely care about what you're going through and they offer great advice.  My husband was at the point where he wanted to give up and because of the advice on this website now there is hope.  Just remember to stay happy and positive, despite all the emotions you will all be going through.  Good luck with everythi

[Shdwsldy]

I do know that origionally that it was just the anitbody test.  I'm not exactly sure when the first viral load test was done, but at most no more than 3 weeks later when the hematologist had confirmed that he no kidding had the virus.  It wasn't long either that they told him he was genotype 1b.  They have been monitoring his viral load the last few weeks and it has been sporadic.  Although its been low, its been anywhere from 1.2 mil to 100,000.  I'm sure that it's peaked higher at some point.

Fortunately due to his military service, he has long been vaccinated against hep A & B and has regular testing of HIV as well.  All of which he certainly does not have.  The doctors are a bit baffled and often refer to his case as unusual, different, heck even a bit weird.  Which kind of drives my hubby nuts, as he just wishes it was a bit more normal in this case.

Unfortunately, I'm not sure if they said his cirrhosis is compensated/decompensated.  He didn't say or may not have understood.   Given the information, I had expected some damage to show up, but never to that extent.  So I stayed at home with the kids on Monday since the hepatologist is so far away and I really didn't want to deal with a cranky 1 year old missing a nap.   Hopefully the doctor at his appointment tomorrow will also have the results so that I can ask those questions when I go with him.

He is definitely a bit on the impatient side with all of this.  I know he understands that it will take a few weeks to get everything lined up to start up treatment when I talked to him yesterday, but I don't think he really wants to hear that.  And we both agree, whatever the doctors want to do to try and figure out why he has this cirrhosis, we'll let them do.  Unfortunately, it cannot undo the damage that already has been done :(

[Advocate1955]

In your other post, you said that they diagnosed his Hep C in the ER. How did they do that, with an antibodies test or with a viral load (PCR) test?
What are his risk factors for Hep C?
Since he's been diagnosed with Cirrhosis, and he may have only had a recent exposure to Hep C, does he have other conditions that may have caused his Cirrhosis?
Advocate1955

[Advocate1955]

It's great that he's all about moving forward. Fear holds a lot of people back. It is a slow process as his hepatologist probably explained. First they will need to determine if he has a viral load and if he has a chronic Hep C infection and what genotype it is, if he does. They will want to vaccinate him against Hep A and Hep B to protect his liver and they'll want to test for HIV to make sure he doesn't have a co-infection adding burden to his liver. Then they'll discuss a treatment plan, based on all of that. Do you know if his Cirrhosis is compensated or decompensated? If he is compensated, his hepa may recommend treating his Hep C, but it takes a few weeks to get the prescriptions authorized. So, take it one step at a time. It will take a few weeks to get through the process.
Advocate1955

[Shdwsldy]

I am definitely very thankful for the forum and the people here.  Here, I can find people who understand and get it.  Sometimes you find that your friends don't understand or support you in the way that you need.  I had a friend of over 14 years let a recent misunderstanding get in the way and wouldn't call me while he was in the hospital the second time to see how I was doing because her husband told her to "leave it alone" and let me talk to her first.  I think that would have been fine advise under normal circumstances... but I digress.

So far he's seen his primary doctor who was very quick with a referral to a hematologist when she though it was anemia.  The hematologist, while not exactly what he needs, has been outstanding.  Then of course this turned into another referral to another doctor who has experience with HCV (but not his specialty).  And of course this resulted in yet another referral to the hepatologist who is 1.5 to 2 hrs away (which is the nearest).  Not to mention the gastroenterologist that was one of the original specialists he was referred to.  So far all parties involved have been exceptionally good at explaining things and taking the time to answer all of our questions.  And the hubby has definitely gone above and beyond what most people would do to keep all parties in the loop.  I just wish I had been with him yesterday at the hepatologists office so I could have asked questions :(

So now we are definitely looking at treatment in the very near future.  However, it seems like the logistics of getting the treatment lined up and managed may be a bit murky at the moment.  My husband is all about moving forward and getting treatment started (even if he is a bit impatient).

[Idyllic]

I'm sorry to hear the results of your biopsy did not seem what you were expecting. I am not sure how effective ultrasounds & MRIs are when it comes to staging liver disease. Though there are many noninvasive ways to diagnose fibrosis I still find myself encouraging most newly diagnosed people to have a biopsy.

If anything since it enables clearer communication and understanding if one can express their condition by stage and grade.

What Is a METAVIR Score?
The METAVIR score helps interpret a liver biopsy. When this biopsy is performed, doctors need a reliable way to quantify what is seen under the microscope. This scoring system assigns two standardized numbers:

one to represent the degree of inflammation
and the other the degree of fibrosis.

What Does My METAVIR Score Mean?
The fibrosis is graded on a 5-point scale from 0 to 4. The activity, which is the amount of inflammation (specifically, the intensity of necro-inflammatory lesions), is graded on a 4-point scale from A0 to A3.

Fibrosis score:
F0 = no fibrosis
F1 = portal fibrosis without septa
F2 = portal fibrosis with few septa
F3 = numerous septa without cirrhosis
F4 = cirrhosis

Activity score:
A0 = no activity
A1 = mild activity
A2 = moderate activity
A3 = severe activity
______________________________________


Hepatitis C is a blood borne (spread primarily by blood-to-blood contact) infectious disease that is often asymptomatic. As a result many of us have no idea how or when we contracted the virus.

There are studies that show alcohol can facilitate replication of the virus (http://www.ncbi.nlm.nih.gov/pubmed/23126531) however to what degree and how rapidly this would occur is not exactly clear cut.

I think what I am trying to say is that how the disease progresses to a certain state is not always apparent unless (or until) other conditions or factors come to light.

I encourage you to keep all physical copies of your husband's labs and especially his biopsy report. It would help the more experienced members offer insight into where to go from here if you could offer more specific information directly from the biopsy report, as well as his Genotype and perhaps other health issues your husband might have.

I can imagine this is a very scary time for the both of you. More and more people are clearing the virus as new drugs emerge. I am not clear on your husband's diagnosis so this post is really my way of bumping your post and offering support.
Best of luck.

[floridian7]

This is a very shocking and scary journey.  I am so sorry you both have to take this.  Find a highly respected doctor to guide you through this.  
I m a RN who had a blood exposure and found out.  A live biopsy indicated I needed tretament.
It has been difficult for my husband and daughter too, but they have been my best supporters.
This is a great site to help guide and give advise, so glad you found it.
I don't know about the hcv being exposed sooner but do know or liver is a huge magnificent organ that even when in bad shape can function without giving indications of how bad it really is.  
Take this news as a blessing you both found out now instead of when other end stage symptoms have appeared.  As this may be his saving grace to give him time to get the transplant that saves his life.
Hang in there and I will keep you both in my prayers.  He need esceptional doctors and lots of support....  Good Luck!