Finished 12 weeks of Harvoni :)

[Karin]

 Hello Everyone! Well i took my last Harvoni pill yesterday and had my 12 week check up. I was kinda surprised when i got there cause my Dr. did not plan on running a blood test for another 4 weeks. I was really looking forward to having it to ease my mind that i was still negative for the virus so i insisted he complied. His reasoning was that i was negative at 4 weeks so he was 99%  sure i still would be, but waiting another 4 weeks was not going to fly with my stress level at this time ( got a lot of others stressfull things in my life right now). Anyways i should know in about 5-7 days. He also gave me a hep a & b vaccine, did anyone get those also?
I asked him so now that I'm cured what should i do to keep it safe meaning diet life style ect... He said nothing eat what u want take meds as you need otc and rx just do not become a raving alcoholic. I was about to ask him if that meant i could have wine with dinner but decided not to but does anyone do that after being cured??  It still seems scary to me. I was surprised and a bit confused about my so called liver damaged also. In the beginning before i started Harvoni my fibro scan put me at a f3-4 that is pretty bad i thought. I asked him why he calls that minimal liver damage? He replied i would never even know i had damage if i hadn't had the scan. I would be fine living like that, but if one of the scars turned into cancer i would know. To me that's about a 50/50 chance so that's why i asked him what i should do to reduce my risk of liver  cancer and he said i did it, i cured the Hep c virus. Once the Hep is gone there is no reason for my liver to get worse and the Harvoni may have brought it down a notch on the fibro scan. Eventually I will do the fibro scan again i will insist. It just seems crazy to me that there is no reason to juice, eat healthy,abstain form alcohol because he says my liver  will not get any worse or better. Does anyone think the same as he??? If so i would love to hear from you and anyone who does not its all confusing to me.

[MommaT]

Hi Karin,

I wish I could help you and I am sure a forum moderator will very soon . Congratulations on completing you 12 week Harvoni :)That is something to celebrate!
Question: When did you get the Hep A +B vaccine? My Gastro just checked said I was Positive for A and Not for Hep B-but never gave me a vaccine for Hep b so I  need to know when yours was done. I get 1st -4 week on Epclusa  Quantative VL blood test 10/14 11/9 +12/?.

 I am totally confused, too. Seems every Dr does it different prior, during and after treatment. As for alcohol and diet-well I will never touch a drop because it just does not make sense. I will being seeing My Gastro and ask on 10/20 about that. 

I think you have to push to get answers for anything. The Drs do not follow guidelines at all and as for me, I have Compensated Cirrhosis which scared the heck out of me.
I have other stressors in my life and this just makes everything harder.

I hope you get the answers you seek and be pushy with your dr. Every step is a struggle to get-MEDS-then struggle with bloodwork and getting a doctor to really take the time to listen and explain!

 My Dr said Hello -Oh I love that color of sweater and You have Cirrhosis! .....the good kind! We will get you on New Meds and you'll be fine. My mouth dropped and left the office stunned. I will try and I hope you too will get some answers. 

[Luna7]

Congratulations on finishing! I remember when I took that last pill and how happy I was, and now I'm near the end of the 12-week post treatment period when I will know for sure (well close to 'for sure') that the virus is indeed gone.

It's very strange and confusing how most physicians don't address nutrition, and many don't even believe nutrition plays a part in many diseases. However, you will find some that think good nutrition is vital to our health. I would have thought when I went into my first appointment to treat Hep C they would have asked what I ate or if I exercised, but all they asked about were diseases, sex practices, and drugs.
Traditional medicine is geared toward treating disease, and not prevention of disease.

Anyway, I have researched nutrition in the past, and decided to learn even more of late, and there are indeed foods that one can eat to make the body stronger. Superfoods like kale and other vegetables, whey protein, and bone broth will increase the glutathione so important for cell health.

For breakfast I have either bone broth or a whey protein shake (non-denatured, biologically active, grass-fed, organic whey).
For lunch I have either a big salad or a super green drink with lots of kale and/or spinach.
For dinner I have some type of meat and more veggies.
Not hard to do at all and I'm making every bite of food count by not eating filler foods like sugar and white flour that add no nutrition.
And eating organic foods reduces the toxins like glyphosate that is present in GMO food (they keep adding more glyphosate to GMO food because it's not working as well now). Pesticides/insecticides/herbicides are hard to clear from the body and affect our immune system negatively (or some say contribute to major disease).
Organic foods also have more nutrients, as they are grown in better soil.

I do take some supplements too, but after researching well. I do try to get most nutrients from healthy food however.

I will never understand why some will poo-poo what is called 'natural' now, while eating the most unnatural food grown in artificial ways and picked before it should be, shipped far away and losing nutrients along the way, laden with pesticides, and grown on depleted soils that have few nutrients.

[Karin]

Hi Mom ma T and Luna 7 and thanks for your responses. Mom ma I got the a& b hep vaccines the last time I was at clinic, which was this past Tuesday. My Dr. will answer whatever I ask he is pretty nice but I just do not agree with him about diet and lifestyle. I mean really everyone knows what u eat is what you get back and how you treat your body is important, ALTHOUGH with saying that it makes me crazy to watch my husband drink beer, never exercise ever, and eat crap food and he never has had the issues I have had. I fought breast cancer back in 2010, and now this and I have always tried to eat fairly healthy and have been in the fitness industry most of my life !!!! so whatever. I am going to continue to live healthy but that does not mean I will not sometimes indulge in the finer, sweeter, things in life:) beginnning to really grasp the phrase "You Only Live Once" Take care my friends

[FutureThinker]

CONGRATS KARIN!!! So happy you made it thru!!

Per the AASLD guidelines (hcvguidelines.org), the term "cure" is not valid until 12 weeks AFTER you take your last pill and your VL is still undetected. Take a look at those guidelines.

I had the HBV vaccine many years ago as a healthcare provider, but my hepatologist recommended on my first visit back in '12 that I get the HAV vaccine, so that was done well before I started treatment this year.

Re: nutrition:  It appears not many physicians get much education in this important area of our health, from my experience.

Re: wine:
I would AVOID ALCOHOL until you are sure you are cured, which is another 3 months from now. And then at that point, discuss this topic fully w/ your doctor.

Enjoy your day and keep us posted on future tests --  the future is bright!  FT

[KimInTheForest]

Congrats on completing your treatment, Karin!! Huge milestone. I finished treatment more than a year ago and have not resumed drinking alcohol and don't plan to. But everyone is different on that.

(I have just started drinking kombucha which is fermented from black tea and sugar with a starter- "scoby" - added. Is THAT alcoholic? There is no sugar left when it's done. It is not a sweet beverage. But I am wondering if there may be 1% alcohol. Anyone know? Supposed to have good health benefits.)

Other than that, I eat as healthily for my liver and my whole body as possible. I eat a lot like what Luna describes. I think a doctor is the LAST person who can give anyone meaningful dietary advice. Doctors don't really get this training, unfortunately. And most refuse to recognize the important role diet plays in health improvement, and how we can FIX a lot of physical problems through diet. They are just trained with an entirely different model for how to fix health problems. So from a doctor's point of view, when you finish your course of drugs, you're done 'fixing' your health. Sad.

kim

[Lynn K]

When I was diagnosed with cirrhosis on liver biopsy in Jan 2008 my doctor had me get vaccinated against hep a and hep b as I can little afford contracting either one of those preventable illnesses.

Upon my cirrhosis diagnosis my doctor also had me have an upper endoscopy to check for esophageal varicies. The first one I only had grade 1 so I was rechecked at 2 years and they were grade 2. I was rechecked the next year and was found to have grade 3 varicies so I had to have 4 banding procedures over the next 4 months to eradicate the varicies.

I have an abdominal ultrasound every 6 months and blood testing every 6 months to monitor for the possibility of liver cancer as because I have cirrhosis. I am at an increased risk even with cure because I have cirrhosis and while the risk of HCC is decreased with cure it is still elevated.

There is no way to know you have liver cancer by feel. If you can feel liver cancer you are likely beyond help by that point. What kind of doctor are you seeing? Are they a hepatologist associated with a liver transplant center? Do you have a low platelet count or lower leg swelling called edema those are both the earliest notable symptoms of cirrhosis?

Do you have at minimum annual ultrasounds or other imaging like an MRI? Have you had an upper endoscopy to check for varicies?

Per the AASLD (American Association for the Study of Liver Diseases)

MONITORING PATIENTS WHO ARE STARTING HEPATITIS C TREATMENT, ARE ON TREATMENT, OR HAVE COMPLETED THERAPY

http://www.hcvguidelines.org/full-report/monitoring-patients-who-are-starting-hepatitis-c-treatment-are-treatment-or-have

Recommended Follow-up for Patients Who Achieve a Sustained Virologic Response (SVR).

For patients who do not have advanced fibrosis (ie, those with Metavir stage F0-F2), recommended follow-up is the same as if they were never infected with HCV.

Surveillance for hepatocellular carcinoma with twice-yearly ultrasound examination is recommended for patients with advanced fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR.

Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma. Alpha-fetoprotein (AFP) is considered an inadequate screening test for HCC. (Bruix, 2011)

Liver fibrosis and liver function test results improve in most patients who achieve an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Bleeding from esophageal varices is rare after an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis should receive routine surveillance endoscopy for detection of esophageal varices if not previously done and these should be treated or followed up as indicated. (Garcia-Tsao, 2007)

Hi Again

Personally I am not a believer in special diets like juicing and all that but I would suggest to one an all what is called by the American Heart Association a "heart smart diet".

For someone with advanced fibrosis or cirrhosis you may need to reduce salt as that can contribute to edema and ascities. Also use caution with Tylenol no more than 1200 mg/day  and remember that Tylenol  (aka acetaminophen) is an ingredient in many OTC medicines making it easier to accidentally take too much so read labels.

Tylenol is actually the preferred medicine for those with cirrhosis as we are at increased risk of having a serious bleeding event and NSAIDS like say Advil and Aleve as well as aspirin increase this risk.

Plus please if you take herbal supplements use caution as some supplements can harm the liver.

And of course for those with significant liver damage (F3 F4) no alcohol ever.

[Luna7]

(I have just started drinking kombucha which is fermented from black tea and sugar with a starter- "scoby" - added. Is THAT alcoholic? There is no sugar left when it's done. It is not a sweet beverage. But I am wondering if there may be 1% alcohol. Anyone know? Supposed to have good health benefits.)

Other than that, I eat as healthily for my liver and my whole body as possible. I eat a lot like what Luna describes. I think a doctor is the LAST person who can give anyone meaningful dietary advice. Doctors don't really get this training, unfortunately. And most refuse to recognize the important role diet plays in health improvement, and how we can FIX a lot of physical problems through diet. They are just trained with an entirely different model for how to fix health problems. So from a doctor's point of view, when you finish your course of drugs, you're done 'fixing' your health. Sad.

kim

I was out at Walmart yesterday getting some kombucha  (can you believe it's at Walmart!). All sorts of organic stuff is there now, and at a reasonable price. So amazing that the more we demand decent food the more it appears in all stores and for a better price.
Kombucha is great for adding beneficial organisms to the gut, and I figure that is worth it despite the trace of alcohol (my bottle said it was just a trace).
I got the 'green' variety instead of fruit, and it's surprisingly tasty. I probably should make it at home, along with the fermented cabbage so beneficial to gut health, but I don't like to cook much and seem to always find something I'd rather do with my time.

Great seminar going on for 3 days...live:
 https://go2.thetruthaboutcancer.com/ultimate-live-symposium/

[brie41]

Hi Karin,

  Big congrats on wrapping up your 12 weeks!  I will be thinking good thoughts for you that in 12 weeks from now you will have joined the svr club!  I think you can't go wrong juicing and eating healthy.  Best of luck to you! 

Luna,

 I have never tried kombucha.  I really must try it soon!  Brie

[Luna7]

Luna,

 I have never tried kombucha.  I really must try it soon!  Brie

I'm really impressed with this stuff. I was feeling brain fog but after drinking it my head felt super clear and I felt a strong sense of well being (hope I wasn't just intoxicated..lol).
Seriously though, I've been researching it a bit and it appears to have an abundance of B-vitamins and enzymes along with other attributes.
I did have the multi-green kind for the first time lately, so it could be this specific type is what made me feel so good (chlorophyll and other greens were in it). I don't remember feeling this strong sense of well being when consuming the non multi-green in the past.

[brie41]

Hi Luna,

  I am not sure I ever have a strong sense of well being, but I sure would like that.   Can you tell me the name of the multi-green kind that you use.  I really would love to try it! 
Thanks.  Brie

[Luna7]

Hi Luna,

  I am not sure I ever have a strong sense of well being, but I sure would like that.   Can you tell me the name of the multi-green kind that you use.  I really would love to try it! 
Thanks.  Brie

This seems to be a common and popular brand throughout the U.S. in health food stores and now even at my local Walmart. The brand name is GT's and the type I drank is called 'multi-green'. It's organic and raw, having all the electrolytes, polyphenols, and enzymes intact.
 http://synergydrinks.com/index.php/products#classic-kombucha/classic-kombucha-multi-green

Some people can produce less enzymes as they age and so digest less of the nutrients in their food. I'm wondering now if drinking the kombucha with its enzymes immediately after the bone broth and whey I consumed allowed me to digest a lot more of the nutrients in the whey that help reduce brain fog (consuming amino acids in the whey like tryptophan actually helps to make more serotonin - so is a great anti-depressant).
And of course there's the gut-brain connection that probiotics address.
BTW, I was pleased to find that 'leaky gut' is no longer relegated to 'quack status', at least not by informed people who read current medical studies, and the importance of this vital connection of micro-organisms in the gut and their affect on the immune system and brain is a hot topic of interest now.

I think the extreme sense of well being I felt/feel after certain products is actually a healthy state minus the brain fog that often plagues me, and I experience a normal state as some kind of high! It reminds me of how I felt approximately 2 to 3 weeks into DAA treatment for HCV when a different type of brain fog suddenly lifed (caused from inflammation and is similar to what I've experienced during a fever - I call it 'hyper brain fog' as there is more anxiety & high energy connected with it). It was like a veil lifted between myself and the world -- I felt more connected, colors were brighter, I suddenly had energy, and felt in a good mood.
This other kind of brain fog I'm trying to eliminate now is a more mellow kind of brain fog -- kind of how one feels when they can't quite wake up in the morning, but it stays all day for me some days. Often my vision is blurry when I experience it, and I feel fatigue.

Anyway, I'm on a mission to get well and help my daughter heal too. When my mind is clear and I feel more energy I can create so much better and feel a strong connection to life.
I hope this helps anyone suffering from brain fog or depression. All the above also helps with mitochondrial repair (most medications and so many other toxins & bodily processes can damage mitochondria).

[brie41]

Hi Luna,

  Thanks I will try it! Brie