hepatitis c

FAQ: About this journal.

This log documents my original 2007 journey through chemotherapy treatment for Hepatitis C ("HCV"), as well as my most recent journey in 2014 undergoing (currently, as of 4/17/14) off-label all-oral-meds treatment.

2008 SPOILER: My 2007 treatment was unsuccessful. I journaled the entire process because there existed at that time absolutely no public documentation of what it was like to be treated using ribavirin and pegylated alpha-interferon. If you're contemplating treatment using interferon, the 2007-2008 entries will probably be of great interest and/or help to you.

2014 UPDATE: On April 18th, 2014, I began a 12-week course of a combination of sofosbuvir (Solvaldi), simeprevir (Olysio) and ribavirin, an off-label combination therapy whose cure rates are nearly 100%, even for previously treated HCV patients. I am documenting my journey with this treatment so that others can benefit from the knowledge.  Click here to see all entries associated with my 2014 treatment.

This is a public journal, designed to ease fears of the unknown for others facing HCV treatment.

This journal displays the most recent entries first.
To start reading from the beginning, click here.

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hepatitis c

FibroScan Test Results

Hm. The FibroScan test came in at 10 Kpa, which correlates to stage 3 fibrosis.

The last test/estimate UCSF made prior to my HCV treatment a year ago was stage 4 fibrosis, which means cirrhosis.

I'm waiting for an email reply from my hepatologist's NP to let me know if this means that (a) last year's test was simply wrong, or (b) this is an indication of liver regeneration now that there's no more HCV infection.
hepatitis c

*sigh*

My FibroSure test* came back with a "NO RESULT". They were unable to calculate a score due to "one or more" of my blood chemistry markers being way out of range.

What all of this sounded like to me: "You have defective blood. Go away."

Time to go pull the covers over my head and sleep in for a few days.


*Not the same thing as the FibroSCAN test I took at UCSF last week. FibroSure is an established blood test that tracks six serum chemistry markers and calculates a score showing probable liver damage.
hepatitis c

6-Month Post-Treatment Checkup

Went up to UCSF this past Wednesday for my 6-month post-treatment checkup. My last blood draw (December 30th) showed no detectable Hepatitis C virus just over 6 months after the end of treatment with Sovaldi+Olysio.

Not only did I get a big hug from my hepatology nurse practitioner, but both my hepatologist AND my former nurse practitioner came in to congratulate me. The latter two have worked with me since 2007, when I went through my first treatment for HCV using interferon and ribavirin...and that was an 18 month sequence. You don't spend 18 months seeing someone anywhere from 1 to 4 times a month without bonding with them just a little bit. :)

Some other exciting news is that not only did my blood tests show no Hep C virus, they also showed--for the first time I can remember--normal AST/ALT scores, which reflect the level of aminotransferase activity in my liver. This is a Big Deal, because elevated scores are associated with liver damage (from Hep C and other causes). I've had elevated AST/ALT scores for 30 YEARS. (More information on AST/ALT scores can be found at http://www.hepatitiscentral.com/hcv/labs/liverenzymes.htm.)

So there's this new procedure called a FibroScan (http://www.myliverexam.com/en/lexamen-fibroscan.html). This is designed to non-invasively determine how much damage has been done to my liver by the Hep C prior to treatment (e.g., extent of cirrhosis) and Non Alcoholic Fatty Liver Disease (NAFLD).

The UCSF liver clinic has purchased a FibroScan unit, and is training their staff in how to use the new system. As a result, they're looking for patients who will allow the staff to practice their new FibroScan skills on for free...but for this week only. After this week, they'll start charging for the procedure, and many medical insurance companies are reluctant to pay for FibroScans because they're new technology.

This is why I got home Wednesday nght from UCSF tonight and headed back up there Thursday morning.

The FibroScan took all of 10 minutes. I took off my shirt and raised my right arm over my head, and the technician placed what looked like a sort of ultrasound probe about the size and shape of a can of V-8 against my side, and asked me to breathe slowly and evenly. There was a series of thumps--I counted 13, although the first three were for calibration purposes only--and then we were done.  The thumps are bursts of specifically tuned vibrations which are measured to see how flexible the liver is. Turns out there's a very high correlation between liver flexibility and levels of liver damage. The higher the damage, the less flexible the liver. The two scores I glimpsed before she cleared the screen were 1.84 and 10.0, but it'll take the staff hepatologist a little time to get around to reading and interpreting the scores into more traditional measurements.

My treatment protocol at this point is getting a blood test every six months, and a physical exam yearly. So far, so good. :)
hepatitis c

6 Months Post Treatment Exam Results

Went up to UCSF today for my 6-month post-treatment checkup. My last blood draw (December 30th) showed no detectable Hepatitis C virus just over 6 months after the end of treatment with Sovaldi+Olysio.

Not only did I get a big hug from my hepatology nurse practitioner, but both my hepatologist AND my former nurse practitioner came in to congratulate me. The latter two have worked with me since 2007, when I went through my first treatment for HCV using interferon and ribavirin...and that was an 18 month sequence. You don't spend 18 months seeing someone anywhere from 1 to 4 times a month without bonding with them just a little bit. :)

Some other exciting news is that not only did my blood tests show no Hep C virus, they also showed--for the first time I can remember--normal AST/ALT scores, which reflect the level of aminotransferase activity in my liver. This is a Big Deal, because elevated scores are associated with liver damage (from Hep C and other causes). I've had elevated AST/ALT scores for 30 YEARS. (More information on AST/ALT scores can be found at hthttp://www.hepatitiscentral.com/hcv/labs/liverenzymes.htm)

So there's this new procedure called a FibroScan (hthttp://www.myliverexam.com/en/lexamen-fibroscan.html. This is designed to non-invasively determine how much damage has been done to my liver by the Hep C prior to treatment (e.g., extent of cirrhosis) and Non Alcoholic Fatty Liver Disease (NAFLD).

The UCSF liver clinic has purchased a FibroScan unit, and is training their staff in how to use the new system. As a result, they're looking for patients who will allow the staff to practice their new FibroScan skills on for free...but for this week only. After this week, they'll start charging for the procedure, and many medical insurance companies are reluctant to pay for FibroScans because they're new technology.

This is why having just come back from UCSF tonight, I am heading back up there tomorrow morning.

My treatment protocol at this point is getting a blood test every six months, and a physical exam yearly. So far, so good. :)

hepatitis c

Goood news.

My last labwork was on 12/18, just over six months out from my last Hep C treatment.

Received an email this morning from my internist that the results from that test show no undetectable levels of HCV.

Although a statistician would say there's still a small chance (probably well under 2%) that the virus will bounce back, for all practical purposes, I'm cured.
hepatitis c

Official notice.

The official message from my hepatologist's office:

Congratulations! Your HCV treatment was successful and you have achieved a sustained virological response (SVR or cure) of Hepatitis C 12 weeks after treatment discontinuation (SVR 12) on 10/20/14. Because of this, your risk for complications of your liver disease are greatly reduced, but because you have cirrhosis (which means a lot of scar tissue in the liver) you will still require monitoring for liver cancer and liver failure.

We recommend:

  • One more HCV viral load 6 months after your end of treatment date to confirm you were cured. This will be in January. After that, no further viral load testing is necessary.

  • Abdominal imaging (CT, MRI or ultrasound) and AFP (a blood test) every 6 months to screen for liver cancer

  • An EGD (upper endoscopy) to screen for varices (which are dilated veins in the esophagus or stomach that can develop in patients with cirrhosis and can cause bleeding). This should be done at least every 2-3 years or more frequently if varices are found.

  • Labs every 6 months to make sure the liver is functioning well

  • Complete abstinence from alcohol

  • Avoidance of daily marijuana use

  • Avoidance of NSAIDs (ibuprofen, Naproxen, Advil, etc)

  • Limit Tylenol (acetaminophen) to no more than 2000 mg per day

  • Avoidance of herbal medications, unless reviewed and cleared by a liver doctor

  • Avoid reinfection with Hepatitis C - you have been cured of your infection, but you are not immune to HCV and could be reinfected if exposed again.

We recommend that you follow up with a Hepatologist (liver specialist) or Gastroenterologist at least once per year to make sure the above testing is being done and that you have no other signs of liver failure.