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Author Topic: recently diagnosed  (Read 14550 times)

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Offline oneearth777

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  • Posts: 10
recently diagnosed
« on: September 19, 2014, 11:48:48 pm »
Let me start this off by saying hello everyone, and thank you for taking the time to read this. I was an IV drug user for a total of 5 years off and on between the age of 17 and 22. I've been clean off heroin for 4 years and haven't drank alcohol in a year.

In 2010, I got a call from the doctor saying I tested positive for the hep c antibody. I ran for 4 years, I was absolutely terrified. About 2 months ago, I was experiencing pain in the upper right side of ny abdomen and went to the ER to get checked out. They found hemagiomas on my liver But they said that they shouldn't be causing me pain. So at that point I made an appointment to get a hepatitis screening and HIV as well. I got those results back today, I am positive for hep c and negative for HIV. I am waiting to see my results next week to find out if it is active or inactive (I think that's what they are doing, lol). It's hard to absorb everything my doctor says when my head is spinning a million miles an hour. I've been pretty anxious about this, but I'm sure a lot of people have worries about this as well. I'm 26, vegetarian, active, energetic and fairly happy. I do unfortunately smoke cigarettes about 8 a day. I eat turmeric, garlic and drink green tea daily. I cleanse with Apple cider vinegar once a week. I'm just sharing my story here...not asking questions or asking for input but if you feel like there is something you would like to share with me, I would be more than happy to hear it! :) thanks again for your time! Mahalo!

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: recently diagnosed
« Reply #1 on: September 20, 2014, 09:43:44 am »
welcome mahalo, I was an addict in the early seventies so I can relate but you kicked it which is great and then you kicked the booze AND now your living a healthy life, which is real good now a days lol,, if you are positive, like me, the new drugs are great and seem to kick ass in most cases especially if you start eating and drinking good stuff so don't worry stay happy and this may be just one more hurdle to jump. and there will always be hurdles to jump, just for shits and giggles I guess. lol  thanks for sharing and good luck and have a great weekend! ''just'' willie g

Offline oneearth777

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  • Posts: 10
Re: recently diagnosed
« Reply #2 on: September 20, 2014, 12:03:16 pm »
Thanks willie! Its good to hear from people living with or cured from this. The medical researchers and doctors are really doing good things these days! God is great.

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: recently diagnosed
« Reply #3 on: September 20, 2014, 01:31:43 pm »
Mahalo OneEarth,

You must be from the Islands, are you there now? What Island. I used to hang on the Big Island, had 3 acres but had to sell, what a shame.
Anyway, I have had Hepc for about 44 years now, when I got it , it was a unknown virus except that in about 20 years the liver may get severe damage.
That is what I was told, It is 44 years and the worse I felt was the same your feeling. The "baseball" under the right ribs. It is common in hepc. Also fatigue which means the liver enzymes ( alt\ast) are probably high and damage to the liver is probably happening, but it usually takes more than 4 years for bad damage to happen. The pain can be subsided by diet, exercise and good habits. I would try to quit smoking too. You stopped drinking and that is the best thing to do. Your liver doc needs to do tests to see if there is any substantial damage.  A fibroscan is great to show fibrosis, alpha fetoprotein is  an indicator for liver cancer-(just to be sure).  PCR RNA Quantitative exact count to see what the viral load is. Comprehensive and Metabolic blood panels to get detail on how the liver is functioning and blood counts. Genotype is still important to determine treatment options.

This is essential stuff for a hepc patient, as I have found in my 44 year journey. Your young in age, and young with the disease so you can calm down. I read about the hemagiomas and they seem to be unrelated to hepc.
Getting educated is now your job if you want to defeat this. The treatments are now just getting somewhere and worth obtaining. I held off treatment in the past as I had no confidence in them . Now I feel the treatments are good and getting better in the future.
I recently started Sovaldi with Ribavirin and am on my 12Th week of treatment . At week 3-4 the virus became undectable so there is alot of hope going on. I still have the small baseball with a little pain, I am not worried about it as I have been tested thru and thru. Getting rid of the virus with treatment will then get rid of the symptoms when the liver heals. Take note that when the liver has no advanced damage (scarring) it will heal itself when the virus is gone.
OK, enough of talking story.
Mahalo

Offline willie g

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  • Posts: 427
  • geno 1 25million etc. s/o for treatment
Re: recently diagnosed
« Reply #4 on: September 20, 2014, 03:24:59 pm »
Thx ray, ya I was wondering about pain and golfball(FOUR!)I still got it into nine weeks or so. Hope it hits the road soon. ""Just" willie g. Have a nice weekend

Offline oneearth777

  • Member
  • Posts: 10
Re: recently diagnosed
« Reply #5 on: September 20, 2014, 03:47:37 pm »
Rainbow ray~

Thank you so much for your input, I'm still a bit new to all of this and need to talk more with my doctor. I am learning a lot from these forums as well! Its refreshing to hear other people's stories of conquering this and makes me feel confident that I can possibly to the same. I was on the Big Island as well for a year caretaking a beautiful property in the jungle, I have since come back to California. Thanks again for your words!

Offline Pelham123

  • Member
  • Posts: 70
  • Genotype 2 - Tx Sovaldi/Riba
Re: recently diagnosed
« Reply #6 on: September 20, 2014, 09:44:41 pm »
Hello oneearth.  Welcome to the forum.  I found out 4 months ago that I have Hep C.  I'm sure I got it during the Viet Nam War, So, I've had it for 40+ years.   

I am 8 weeks into a 12 week treatment with Sovaldi and Ribovirin.  Just got results from a fibroscan which showed little to no fibrosis.   You are young, you found out early, and you have stopped drinking.  All excellent for healing! 

Offline oneearth777

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  • Posts: 10
Re: recently diagnosed
« Reply #7 on: September 20, 2014, 10:13:34 pm »
Thank you so much for sharing your story. Its wonderful to see so much success and hope in the hep c community.

Offline Mike

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  • Posts: 999
Re: recently diagnosed
« Reply #8 on: September 21, 2014, 12:44:07 pm »
Hi oneearth777

As ironic as it may sound, today is the best time to learn you have a Hep-C infection.

When I learned my status in 2000, the only treatment available was a 48 week course of Interferon and Ribavirin, which was a grueling prospect and experience to say the least.

For me, the chances of a cure were about 25-30%. Well, the treatment didn't work and there were no significant advancements made for another decade and a half.

Fortunately, I did not have a lot of liver disease progression and was warehoused for 14 years, awaiting the next generation of antiviral drugs to come to market.

For some, however, 14 years was to long and many lost there lives to this pernicious virus.

That's the danger with Hep-C: Many who are infected don't develop liver disease. But the 20% who do, the only treatment (way to stop the progression of liver damage) is eradicating the viral infection.

The good news: the new generation of drugs have arrived and boast a 90%+ cure rate, which is only going to get better!!!!

Folks are being cured daily who had no hope just a few years ago. Lives are being saved, livers are being repaired and hope is here for millions!

I lost the battle in 2001; but slayed the dragon in 2014.

Please take comfort in that, the day of active Hep-C infections are numbered and a cure for all is at nigh.

You'll be fine. Get with your doctor and discuss treatment options and success rates. This is truly the golden age for Hep-C treatment.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline oneearth777

  • Member
  • Posts: 10
Re: recently diagnosed
« Reply #9 on: September 21, 2014, 06:28:28 pm »
Thank you Mike! And congrats on beating this! All of you are very inspirational!

Offline oneearth777

  • Member
  • Posts: 10
Re: recently diagnosed
« Reply #10 on: September 21, 2014, 06:37:18 pm »
 I do have a question though. Do any of you have any tips for pain relief? I know that most things are bad for your liver But is there anything you guys take over the counter?  Ice, heat or salves?

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: recently diagnosed
« Reply #11 on: September 21, 2014, 07:41:08 pm »
In addition to ice, heat, massage, acupuncture, acupressure, visualization, you can take any OTC med, but acetaminophen is the safest - if used sparingly and as directed
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline oneearth777

  • Member
  • Posts: 10
Re: recently diagnosed
« Reply #12 on: September 21, 2014, 07:50:42 pm »
Thanks for that!

 


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