Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: Ravenvictoria on December 02, 2015, 10:36:58 pm
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I appreciate anyone who takes the time to read and respond to this as it is more than I have ever spoken of my HCV and I am finally ready put my past behind me and deal with my future. Thank you :)
I was diagnosed with Hep C in 2000 by a community health nurse over the telephone. I was told there is “no cure” and she concluded our phone call by saying, “I’m sorry”. I remember thinking, she is sorry??? No hopeful advice or referral to a doctor who can fix this? I mean, what else is a situation if not hopeless when you are simply told “sorry”. Don’t get me wrong, I do not blame this nurse, she meant well and let’s face it, 15 years ago, what else could she say. Nevertheless, those two words have plagued my thoughts for all these years and my interpretation of their meaning became my sentence.
I was advised by my doctor to continue regular monitoring of the virus but that I may not experience symptoms ever or for many years. I basically went on with my life without any real clue of what I was dealing with. I tried very hard to forget about it, but it always lingered in my mind. I felt damaged and ashamed because I got it from a rash (albeit short) stint of drug use in my early 20’s. This feeling of damage and shame has effected almost every area of my life. Every once in a while I would muster up the courage to do some reading about the virus and available treatments then promptly bury my head back in the sand when the fear and anxiety became too much. I should note that the treatments available back then were not very promising (low success rates and undesirable side effects).
I decided to keep my diagnosis private from most of my family and friends. I never wanted the stigmatism that came along with HCV or any chronic illness. “Oh, she has a cold, I wonder if it’s the hep C acting up”, “She looks tired lately, well she does have Hepatitis”. My worse fear was that people would not want to eat food that I made or swim with me etc. Is that irrational? Perhaps, but that is the way I chose to handle it. To avoid this stigmatism, in return, I had to live with this feeling completely alone. I’m still not sure which is/was worse.
Speaking of irrational… In the back of my mind, I have felt like a ticking bomb where at any moment, I could get sick. I remember a day many years ago when I was changing clothes and my upper thighs were completely blue. I started hyper ventilating and thoughts of, “this is it, its happening, I have a symptom”. I called my mom and in her attempt to calm me down she suggested that maybe the jeans I was wearing had transferred dye onto my legs. That was it. What was I thinking? There are no sickness’ that turn peoples’ thighs blue. I mean seriously, here I was changing my clothes and all of a sudden my thighs turned blue and I keeled over dead the next day? Not exactly rational thinking… Fear can do that.
Fast forward to today. For the last couple years, I have begun to have symptoms. Brain fog, tiredness, pain in my upper abdomen etc. Lately in particular, I am suffering from mild depression and extreme anxiety. My liver test shows inflammation that my doctor described as indicative of middle stage of liver damage. (I will find out all the actual numbers tomorrow as I am beginning to learn what they mean). I will be referred to a liver specialist tomorrow.
For the first time in all these years, I am going to muster up the courage and deal with this. I have never felt so hopeful about the treatments. I love this forum as I finally feel not so alone in this. I will keep posting as things come along.
(I am happy to report that my thighs are still a normal color :))
Thank you for listening!
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Welcome to the forums, Ravenvictoria! :)
It sounds like you are on the right road, getting referred to a liver specialist at this time. Because the cure for this is really and truly here - a few weeks of pills with minimal and temporary side effects. Insurance coverage for it can be a battle. Some people breeze right through in getting coverage. Others have to appeal and fight to get the treatment they are entitled to. But you will be cured.
kim :)
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Ravenvictoria, that was a beautifully expressed post you wrote. There was no treatment when I was diagnosed, either, and then came those many years when, as you note, the treatments had low cure rates and nasty side effects, which in my case (because of other medical conditions) would almost assuredly have made me worse.
Now is a great time to get rid of HCV. Whichever of the current medicines your insurance company allows, they're all highly effective. Once your liver specialist knows which genotype of HCV you have, s/he'll know which treatment to prescribe. And you have an understanding community right here -- glad you have joined us.
Gnatty
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well ravenvictoria, you are certainly not alone and the personal history you expressed above is a familiar one to many of us...not sure about blue dye though :) very funny story
We have all felt that stigma, no matter how we were infected and the fears and denial as well. Be strong and get ready for a very exciting voyage to SVR.
welcome
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Now is the time to take your health and make it better! This is a good time, no a GREAT time for treatment. Good luck.
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Thanks everyone.
Can anyone tell me what the criteria for drug coverage is? Is it to do with how far along liver damage is? Or are there other considerations?
I'm in Canada if that helps, not sure if Canada/US and other countries differ in access to drug coverage.
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I'm in Australia so it's totally different here, sorry!
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Hi ravenvictoria
You story and especially feelings you describe are the same for most of us.
A lot depends on your insurance and how much or little liver damage you have we have a cohort of Canadians here who will likely come along with more info.
Just to let you know if you do test with a higher level of liver damage especially if it says cirrhosis you will be ok
I was diagnosed with cirrhosis in Jan 2008 after being followed closely since 1990 when I was diagnosed with hep c having a liver biopsy every 5 years.
My point being I am still here and with cure we have a chance that with whatever damage has happened up until now our livers may begin to heal. Especially so if you have less damage but even folks like myself with cirrhosis have hope but at least we will no longer have our livers getting continuously damaged by hep c.
Good luck with your tests and no more blue leg scaring yourself lol that was too funny :)
welcome to the forum!
Keep calm carry on!
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Thanks everyone.
Can anyone tell me what the criteria for drug coverage is? Is it to do with how far along liver damage is? Or are there other considerations?
I'm in Canada if that helps, not sure if Canada/US and other countries differ in access to drug coverage.
Hi Ravenvictoria. I am in Canada too. I was cured this year via a clinical trial of Harvoni+ribavirin. Our government-funded health insurance would NOT cover me for the new drugs because I was treatment naive. I would have first had to try interferon before I would be eligible for an all-oral treatment. I had said no to interferon for 20 years, so I wasn't going to say yes now when the real cure had arrived and was safe and all oral.
The rules for coverage in Canada vary province by province, I believe. Degree of fibrosis (liver damage) did not seem to make a difference - at least I was not told that it did. I was F3 according to my 1st fibroscan, and was still told no sovaldi+riba unless I first tried interferon. (Another fibroscan done elsewhere pegged me at F2. I like that number better so I put it in my sig. ;) )
I imagine the liver specialist you are being referred to will have all the info about your treatment options in your province. But basically, your options for getting the new drugs and getting cured are:
1. Have your provincial medical plan cover it, if they will.
2. Have a private, 3rd party insurer cover it, if they will.
3. Find a clinical trial within travelling distance (there are quite a few, and many of us have now been cured this way).
4. Get low-cost generic versions of the drugs from reliable overseas sources - e.g. the Mesochem lab in China or the Australia Buyer's Club or Greg Jeffrey's India connection. Quite a few people are going this route to get cured. And several people on these forums are posting about their experience of doing so. You need to research a few things, like what Canada Customs will allow you to bring back home or have shipped to your home. But people are going this route and it works. And for a fraction of the cost of the drugs in North America. (You need to make sure you are using one of the reliable tried and true sources for the generic drugs, not just any old 'buy now' button on the internet that says you will get a Hep C cure.)
Keep us posted on your progress!
kim :)
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Wow Kim, that was very informative and so helpful to me as I am really new to this stuff.
I found out my viral load is 100,000 which I have no idea what that even means. I am waiting to read my whole lab results in a few days. In the meantime, I have a referral to a specialist so that is a start.
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A viral load of 100,000 is fairly low. But viral load isn't terribly relevant. It is not an indicator of degree of liver damage. And it is not a predictor of your chance of being cured by the new drugs. The new drugs cure pretty much everyone, regardless of viral load (although people who have cirrhosis, and who have failed previous therapies, may have to take the new drugs for twice as long as the rest of us - i.e., 24 weeks instead of 12).
best,
kim
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For Harvoni with a viral load of less than 6 million a treatment length of 8 weeks can be considered per the Harvoni prescribing information sheet if you don't have cirrhosis
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Thanks for your personal story and your thoughts Ravenvictoria - I can relate to what you write and I'm also at the start of my treatment journey. I look forward to hearing how you go with accessing treatment.
Best wishes
Hazel
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Thanks Hazel. Its amazing how finding people who feel the same way can help us feel much less alone.