Hep C Discussion Forum

Canuck · Guru

RE: New friend here, recently diagnosed

Canuck · Guru

Hi again Juliet,

Was glad to see a post from you again over in Jane and Phils thread. You explained that risk concept very well BTW.

And I liked how you seem to have resolved yourself, and are feeling more empowered, in dealing with and preparing for treatment. Pretty impressive while under duress.

I recall last you were only waiting for results of a fibroscan for approval for sof/dac .... how are things going on that front? Any fibroscan test results yet?

Based on your likely relatively recently contracted HCV, I would suspect your U/S may appear normal and that your fibroscan score might be low, did you have any other ALT or AST labs to share?

Did you ever inquire with you doc(s) whether Epclusa might be a regime choice option that could possibly be approved for you? U.S. is the only country that seems to be rolling it out that i can find.

I just noted for the first time (in the other thread) that your subtype is b, as in GT 3b, that is always good/interesting data to know for yourself! There seem to be more 3a's out than there are 3b's. Loopy Lisa will be glad to know you are a 3b, just like like her, to keep her company, she was feeling a wee bit lonely! C.

RAGDOLL · Senior Member

Hi Juliet, welcome to the forum. As a few have said you are in early stage. A lot of us have had over 40 years and have had different degrees of physical damage. Being a GT 3 ( and for such a short time). you have very good choices now in DAA combo drugs that will knock it out quickly. You will do great with few side affects. My combo was like taking an aspirin, maybe a few headaches some days, but who doesn't get a headache once in a while anyway. Don't worry about how or when you got this .... But focus on the fact it is treatable and will be gone soon. I pray you husband chooses to take the treatment as well. These new drugs really work and he could be free from all this too. It's never too late. Blessings to you and your family. Chris

Canuck · Guru

What have I done!!

Not only did I completely tread over Juliet's thread with my unhinged-ness, now she knows (if I am not angry) I am completely mad!!!

Sorry Juliet! C.

Observer · Guru

Ahhh Canuck,

my fellow Canuck, I do so love your wicked sense of humour.

Of course if you are in a forest, you wouldn't be angry, no matter what your ALT is. As for still having hepatitis, well if you'd asked me that a few years ago I'd have said sadly, yes, but thanks to new treatments, I guess the answer would be there is only in the forest, eh?

I think?

Alison

-- Edited by Observer on Sunday 4th of September 2016 05:10:20 AM

Cheddy · Moderator

Ah yes, I have heard that anger resides in the liver, but that the liver is also known as the vessel of courage. I haven't been able to put these ideas to work. I tried to be less angry and even tried to find more anger. What I found was HCV. Then I found DAAs. I'm not feeling angry about much of anything anymore. Huh!

Canuck · Guru

Observer,

I hate to do this to you, because i can tell (I know) what a kind and tender soul you are - what good intentions you always bring forth with your posts, insight and knowledge. And, BTW, I am a wee bit familiar with what you speak and I DO NOT disagree! I get ying and yang, hot and cold, meridians, etc. But ... i just cannot resist, sorry, (really sorry) I can't stop myself from letting my warped sense of humour take me over here. Forgive me. The fodder is just too tempting.

Is my liver angry? My ALT says so. MY brain registers my ALT number, therefore my brain is now angry too? If I had not known my ALT would my brain and my liver not be angry, or, would i just not be aware of the anger?

If a person stands in a forest and knows no ALT, does this mean he has no hepatitis.

This loop thing - sheesh, little did I know my liver was very angry, for about the last 43 years! No wonder my head is so bad at the moment, 43 years of yuck, arriving all at once to my brain last year!

(Just joking!!!) Don't stone me please. smile C.

Observer · Guru

According to traditional Chinese medical philosophy, Each organ has a corresponding emotion; imbalance of this emotion can affect the organ's function.

For example, prolonged anger can lead to an imbalance in the liver. At the same time, liver imbalances can produce symptoms of anger, often leading to a self-perpetuating cycle.

Alison

Phoenix17 · Senior Member

Hi Canuck and Juliet - I live in Wisconsin. I was approved after about a week and a half after my doc put it in to my ins co. It surprised my hep doc, he didn't think they would approve me for Epclusa because BCBS was notorious for denying. Glad to see he was wrong!

I have faith Juliet that you will be approved. It seems like it's getting easier. I hope that is the case, as it's ridiculous that anyone should be denied any medication. I don't care how much it costs. That's why we have health insurance in the first place.

Everything will fall into place!

Phoenix

Sydhanrahan · Guru

Hi Juliet,

like Canuck, I am wondering how you are. we are hoping you are nudging along the queue quickly with Epclusa as the prize. Although any of the alternatives without RIBA would be worth a try.

Honestly, no one here was making judgements about you or your reaction to finding out you have Hep C. As you say, life is complicated, and besides it's quite unusual for hep C to be transmitted through sexual contact, so you were unlucky too.

I'm making judgements about you though as I read how worried you are about your ex. Still compassionate enough to be chewing yourself up for someone who has caused you harm in more areas than the strictly medical.

Apart from whether he deserves your compassion or not, he obviously needs to face up to his situation and look for treatment. But thats not as important as you are - especially to your kids.

We all know here how random thoughts fly around your head before treatment like confetti in a wind machine. You will be okay. Put yourself first.

Syd

Canuck · Guru

Hi Juiet,

Just wondering how things are going for you.

You mentioned you had to wait for a fibroscan to be done (U/S already done), and that you and your doc had discussed sof/dac as your treatment to be. It is a very good reliable effective proven treatment for GT3's. The newer Epclusa has now proven itself well for all GT's, and especially for GT3's and we see it now being rolled out for use in the U.S.

Did you and your doc ever discuss Epclusa as another treatment regime for you, being that you are a GT3? It was not long ago in the Pacific NorthWest that sof/riba may have been the first treatment offered to you! (I think). I am so grateful for the newer effective Daa's, so much more comfortable than doing a regime that must include riba.

I am just wondering if you and your doc ever had that Epclusa discussion.

I noticed you are in the Pacific NorthWest and I am trying to surmize which of the States are now rolling out Epclusa sooner, than other States are. To me it is a curiousity how, State to State, the roll-out of Epclusa use, via scripts, seems to be offered unevenly.

MommaT - GT2 - (NJ) was having difficulty getting an Epclusa script approved. Yet, it was "relatively" less troublesome getting Epclusa in Ohio, Alabama, and for "Phoenix" (I don't know her State).

Let us know how things are progressing for you. smile C.

Shadowfax · Guru

Hi Juliet,

I would certainly not worry about being judged here or doing stupid things. Many if not most of us got here because of the sins of our youth.

We just move forward. It would be great if he understood the treatments today are pretty easy compared to what he went through if he does not. That might make this a lot easier to give it another and probably the last shot to clear the virus.

Keep us posted

SF

Juliet17 · Member

To everyone who responded, your replies were like a wonderful healing tonic. I truly thank every one of you.

Stressing over the past is indeed not productive. Recently, I've spent too much time dwelling on my errors, not just the ones related to Hep C, and I need to stop doing that. As everyone says, you can't change the past. Now, I do not go around quoting religious texts, but I find pieces of wisdom in many belief systems, even if I don't subscribe to the whole system. And one that has been helpful to me lately is the one about a person guilty of misdeeds being told to "go and sin no more." In other words, don't beat yourself up over your past mistakes, just get up, put one foot in front of the other, and resolve to do better from now on.

Also, I thought about being angry at my dh over his apparent lack of concern about potentially exposing me to the virus. It is entirely possible that he was not ignoring the risk but that he truly thought there was not a risk. For one thing, he was devastated to hear that I was infected. Also, he has developed this strange mindset that his existence has no effect. For example, he'll make a bunch of noise at night and then be completely surprised that he woke people up or yell at someone and be flummoxed that they're upset. I'm starting to worry about hepatic encephalitis with him for this and other reasons. I occasionally call him Catman as friendly kidding over the fact that his sleep schedule is like my cats' - all night with a couple of longish naps during the day. Now it strikes me as a worrisome potential symptom, and I'm really concerned about him.

Anyway, after my diagnosis, I urged dh to start treatment, and I bugged him about it again yesterday. When he went through treatment 10 years ago, it was considered lucky to have genotype 3, but now it's known that this type has a higher incidence of serious problems in the long term. He has had it for around 25 years and was not very kind to his liver in the early years.

One thing I want to address: I want to make sure that I didn't come off as thinking I was "more innocent" because I was never a drug user or that the universe is more unfair to me as a Hep C patient without a risky hx. I occasionally came across this attitude on Hep C message boards back during my husband's first tx, and it always bothered me. On the contrary, I have certainly done my share of stupid things or even more than my share, and just because drug use wasn't one of them doesn't make me superior in the least. And anyway, as we all agree, there is nothing we can do to change our pasts. What matters is what we do now and in the future.

wendyo · Guru

Try not to burn up countless hours and days in negativity and the hows and whys as this takes tons of energy and this is affecting your well being. People with other illnesses typically don't think how they got it, they move forward and focus on getting better.

The treatments today are top notch as are the folks on this message board.

Breathe.

Loopy Lisa · Guru

Hi fellow Geno type 3,

Perspective is the key. This is a curable disease and you are dealing with it at the early stages. I've had it probably a good 20 years and I'm otherwise healthy as a horse. I'm on my last few weeks of Sof/dak with really not many issues at all. First couple of weeks were a bit weird as my body adjusted but now its like popping vitamins. There is no point blaming or being angry, it is already done, and you willingly took the risk. I think sometimes we just have to get on with it and not think too much about it. One insurance is sorted you're going to be cleared. Just relax and think how lucky you are to find out at the very early stages. A lot of people find out when they have become very sick. Peace...

Cheddy · Moderator

What Syd said.

Sydhanrahan · Guru

Hi Juliet,

people tell you not to waste time being angry with the other person but like grief, it's a process and there are steps that need to be worked through before you can learn and accept yourself. in the meantime, cut yourself some slack. After working through related experiences I know I am a kind and generous person and I don't want to change. What I do want to change is my propensity to waste these qualities on self centred takers.

as for the medical issues. In reality, you haven't had the virus long enough for it to have done any long term damage to your health. Your viral load is no indication of the damage done. The new DAAs are miracle drugs and once you get on the treatment train you will be fixed in 12 weeks.

Good luck. Your daughters are lucky girls.

Syd

Lchris1 · Member

Hi Juliet! It's great you found this forum., I just did a few days ago and have found a lot of support. For the last 8 months been pretty isolated in my own thoughts and fears, had family in other states for support, but they knew little about hep c. We are in the right place here. Welcome!

Cheddy · Moderator

Juliet,

The prior posts seem right to me. Trying to figure out how you got HCV won't fix it. You are on the right track already, taking the steps you need to get cured. You know what? You will be cured. You are going to be alright.

In the meantime you will likely worry and feel tired and angry and sometimes hopeless. All I can say is to take it one step at a time. Try not to go over and over the same things unless there is new information. Easier said than done, but good to aim for.

I know what you mean about needing friends. I don't know that there is anyone who will understand the feeling of isolation and loneliness that comes with feeling low about all of this. I didnt even want anybody to experience what I did. Never having joined a forum, I found these friends invaluable and always on hand when I needed them.

I applaud you of taking care of your kids and letting them in on your reality. You may also be the example that gets your husband to reevaluate his unwillingness to get treated (for God's sake!)

So sorry about the overwhelming nature of this. Personally, I had to suspend my obsession and decision making until after I got through treatment. Letting my inner circle know that I was not quite myself helped, too. Now I'm on the other side and it's awesome.

You were smart to reach out. We're right here.

Cheddy

JimmyK · Guru

Greetings and welcome.

Your treatment plan is excellent and you will do quite well. If you had to get this, now is the time as the options and outlook for the cure are incredible.

It is a hard thing to do, but try and separate yesterdays mistakes from tomorrows promises. Mental outlook and strength are part of the tools for this battle in particular to make it smooth and easy.

You have some things to be angry about.... yesterday.

Work on today and tomorrow because those you can have an effect on. You can't do anything about yesterday.

Welcome to The Family here, of which you are a valued part of now.

JimmyK

Canuck · Guru

Hi Juliet,

So sorry for your troubles. It is a large burden to bear. You will get through this tho, with your new friends here. We are here to help. C.

Shadowfax · Guru

Welcome Juliet,

We are glad you found us and you will have lots of support here and answers from many people who have been there and done that. As Tig, mentioned, not having the virus for 20-40 years like many of us have is a great great advantage.

The new drugs to clear this virus that you will learn about are very easy to take compared to what some of the veterans here went through just a number of years back.

Stay positive and just carry on with the tests that are required to get your insurance company on board. This virus moves slowly so this is a great time to clear it and clear it you will.

Keep us posted and there is no such thing as TMI here but please be aware that the board is public and anybody can read the posts, just not profiles and such.

Take care.

SF

-- Edited by Shadowfax on Thursday 25th of August 2016 04:05:15 PM

Tig · Admin

Hello and welcome to the forum! You are among friends and we invite you to relax, look around and ask any questions you may have.

I'm glad to hear you are getting the testing out of the way and are waiting for insurance approval. That has been difficult in the past, but has loosened up recently. Hopefully you get an answer soon. With the recent exposure, I would believe that your liver hasn't been subjected to the ravages of the disease, so the damage isn't what it would be in another 20 years. A lot of us went decades without knowing the extent of damage.

Genotype 3 responds well to Sovaldi and Dak, and with minimal fibrosis, you should be looking good in short order. You are very fortunate to have found out so soon. You mentioned sex as your source of exposure. It is a rare occurence, but it can happen and your description may explain why that happened. Doesn't matter how you were exposed, what does is getting the treatment started and ridding yourself of the disease.

There has never been a better time to treat. We have several options depending on the genotype, not the old Interferon nastiness that kept so many people away and caused so many failures.

Keep us in the loop and let us know more when you hear some. Look around and let me know if you have any questions about anything.

Juliet17 · Member

Hi everyone:

The url of this forum, hepcfriends, actually gets me choked up. I need friends now so badly.

I was recently diagnosed with Hep C genotype 3. It is relatively new infection because I tested negative for Hep C antibodies last year. My liver enzymes suddenly shot up and my doctor was trying to figure out why. Now I look back and figure that I was at the acute stage then and had not developed the antibodies yet. This year, I failed the screening, underwent further testing, and got the bad news. Despite it being (I assume) a recent infection, my viral load isn't particularly low (around 700-800K I think), and I already feel exhausted a lot of the time.

I am a boring old soccer-mom type who never used drugs and have no risk factors other than my husband of almost 20 years being HCV positive. We have lived apart for 5 years and now rarely see each other. He was diagnosed a few years after we were married, and I was scared to death I was infected, too. But I tested negative and was assured that partners in monogamous relationships were at very low risk or possibly zero risk. Well, tell that to my liver. My husband is also genotype 3, and I'm certain I got it from him although I still want to argue with the universe about that. Obviously, we don't have much of a sexual relationship since we've been apart, and I can count on one hand the number of times it's happened in the past few years.

My husband feels terrible about it, and I am actually very angry at him though there's really no point in telling him that. I feel he was stupid for not getting treated (he went through the old treatment years ago, relapsed, hasn't been on any new treatments), which was not only a detriment to his own health but a risk to others. Also (TMI warning), he had gotten a bit disfunctional "down there" and needed these hour+ long sessions in bed. I often found it uncomfortable and expressed to him my concern about Hep C transmission given what some might term "rough sex." Although I never noticed either of us actually bleeding, I knew there can be tiny breaks in the skin that aren't visible to the eye. But by then, sex was an inflammable topic with us, and discussions always turned into accusations and arguments. He just didn't even want to hear the Hep C "excuse." I know it was ultimately my choice that I continued to engage in this behavior a number of times. But I'm sure you all know how complicated relationships can get, and what seems like a simple decision might actually not be simple at all.

So here I am, angry, scared, and feeling very alone. I have 2 kids living at home (ages 19 and 12), and I told them about it, with a don't-worry-this-won't-kill-me explanation. I promptly bought us all new toothbrushes, razors, etc, put mine away safely so no one accidentally uses them, and explained to my daughters what is potentially risky and what isn't. And I try to put on a good face for them even though there are some days I deserve an Oscar for my happy act. Currently waiting for insurance approval on treatment with Sovaldi and Daklinza. Was told yesterday I need to get a fibroscan, although the insurance apparently doesn't deny treatment because of results, they just need documentation.

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