Re: Re: Prognosis Question - Sophie

[Guest guest]

Sophie...I'm pretty sure I am about to tell you something you have heard before... but possibly not. When dealing with a devastating illness (which right now this is devastating to you) or a loss, there are 5 stages of grief that you go thru. Pretty much everyone reacts in these same ways... some get stuck in one stage for longer until they pass into the next. Hopefully this will help you.Stage One: Denial - "This can't be happening to me" or a complete non acknowledgement of the issue. Stage Two: Anger - "Why me?" comes into play here.. as well as getting angry at yourself for reacting with anger... I think this is where you are right now....

or somewhere between one and two.Stage Three: Bargaining - This is where you start to make deals with God or the devil... just make it go away and I'll go to church 3 times a week for the rest of my life... just make this not be happening to me.... (Just an FYI, it doesn't work but you'll still hit this stage)Stage Four: Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning loss of the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.Stage Five: Acceptance-there is a difference between resignation and acceptance. You have to accept the situation, not just try to bear it quietly. Realization that you did nothing to bring this on, it is not your fault Finding the good that can come out of the pain and finding comfort and healing. Our goals turn toward personal growth. How long it takes to pass thru these stages varies from one person to another.. you can actually be in two

stages at once, which I think you are right now... You may be in one of the stages for days or weeks and another for minutes. But we all eventually get to Stage 5. That's where the good stuff happens. That's when you start to get better. Yes, I went thru every stage and I'm sure if you ask some of the people here on this site that have gone thru treatment and come out on the other side like I did, they will tell you the same thing or they will look back and realize that they did go thru these stages. I bet we could get people chiming in right now and telling you what stage they are in. I am here to tell you this is not a death sentence. I did not make the choice to go thru the treatment. My husband of 4 years at the time and my 25 year old son made the decision. We were sitting in our living room talking about the "what do we do now" this was after I had seen my GP again and a gastro. My husband and son TOLD me I was going to give the treatment a shot because neither one of them wanted to face life without me. Or know that I decided to not do anything and when I was dead they would blame me for not trying. AND THEY TOLD ME THAT. When I started treatment, I was 6 months away from being put on the liver transplant list... along with the Hep C, I kinda had a liking for alcohol. I was not an alcoholic but I did drink. And it wasn't beer, I always hated beer, it was the hard stuff. So I

added to my own liver damage. The doctors, said the odds were against me in both beating this thing and finishing this treatment. There was a trick to it. The trick is finding a great doctor that is willing to do what it takes and has done this a lot. My doctor was very aggressive. Looking back and knowing now what I didn't know then (Hey, that's a Toby song!) he had me on twice the recommended dosages of both Ribavirin and Peg-Interfuron. He explained to me that this would be like chemo... and what he was doing was basically poisoning me to the brink of death and keeping me there for 48 weeks. As I said, he was aggressive and most doctors do not use this protocol. But he did what he had to do to save my life. His success rate for Hep C is 95 percent... The national average is around 40 percent. This man was a Godsend. And both him and his nurse held my hand the entire

step of the way. They called me EVERY day.... even on weekends.. just to check in and make sure I was hanging on and not wanting to give up. Somehow, somewhere you contacted this virus but you

know what? It doesn't matter how you got it. It just matters that you have it. Don't rack your brain trying to figure it out.. it could be that you shared a razor with someone that was infected.. you'll never remember that happening. So don't worry about the how... Don't worry about anything, it's a waste of valuable time. Just work on moving forward, one step at a time. Back when I went thru treatment, this was in 2005-2006 I never thought to check to see if there was a

support group online. Didn't know they existed to be truthful with you. But I told myself and my doctors that if I got thru this I would pay it forward. I was going to help people that were in the situation I was... facing treatment, trying to make the treatment decision and going thru treatment. That is why I am here... and I am here for you. You can message me offline if you'd like, I'll even give you my phone number so you can call whenever you need to... I pretty much never sleep so it's not an issue, if you feel like talking you can call me. We are ALL here to help you. You have a ton of friends right now that you didn't have 24 hours ago. Let us know what you need, questions you might have... whatever it is we will do what we can to help. You have lots of knowledge and experience on this site... Let us put it to work for you!Pink hugs,TeriFrom: sophiesworld3 <nod102@...> Sent: Fri, May 21, 2010 9:30:32 PMSubject: [ ] Re: Prognosis Question

Dear Teri,

Thank you so much for your support and for being so giving! I'm certain it will pass soon... It's just that right now life feels like "before" and "after," you know? But this illness is just something that I will get used to managing on a day-to-day basis, one day. I hope that day is soon, because I don't like feeling the way I feel now. In fact, I am going through a lot of anger at myself right now for feeling like this. I don't want to ask "why," or "why me," or to feel sad in general, because I feel that it is so unproductive. Yet, I can't seem to stop feeling sad... or think about how I do absolutely everything the opposite of any known risk factor, so having this disease seems impossible... But feeling like this makes me more angry, because I know it's just statistics and it's not my fault... and so the cycle continues... I know that I have to accept feeling sadness in order to heal on the inside and move on, yet I still cannot do it. Again, thank

you so much for your support - it is so invaluable! I am very sorry for your pain right now - many warm hugs to you, dear Teri!

-Sophie

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> Sophie... you are in the right place. We can help you. The first thing I want you to do is take a deep breath....... now take another one. You are going to be okay. You are probably still in a state of shock from the diagnosis. That is all normal. It's a tough pill to swallow. But it's okay.

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> Yes, most everyone is asymptomatic to Hep C and it is most usually found some strange way like when you tried to donate blood. For me, they were trying to put me on a medication to help migraines and the medication could have caused liver damage so they did a liver panel on me.... Guess what they found. My doctor called me at work and told me on the phone that I had Hep C. I have worked in the medical field for more years than I could count and I knew what Hep C was. It was the reason I left the medical field. Truly it was. Little did I know, I already had it. I got the virus from a blood transfusion in 1980 when I had my son. 5 units of untested blood. They didn't know about Hep C back then.. well they did but it wasn't common knowledge and blood was not screened for it. I thought my whole world was turned upside down when that doctor told me that... and over the phone no less. Like he was telling me I had strep throat or something. So

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> know what you are feeling right now. It's okay to be scared, it's okay to cry, but this is not a death sentence.

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> Don't let the poor prognosis that you are reading scare you. When I was diagnosed and facing treatment I was told I had less than a 35% chance of the treatment working for me and my chances to be able to complete the treatment were even lower. Guess what.. I took the treatment, 48 weeks of it. I have been clear since 2005. It's undetectable in my system right now and my liver is recovering from the damage that was done to it. Your liver is a cool organ. It's the only one that can regenerate itself with healthy tissue.

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> Yes, you need to be good to your liver right now... and forever at this point. You can be nice to your liver but the virus will continue to attack it as long as it's in there. However, considering most people never even know they have this virus and many of them die from something totally unrelated when they are well into their 70's, there is no reason to panic. So right now I want you to breathe again... Deep breath.

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> Your next step is to find a good gastro doctor or a liver specialist. They have the most knowledge on treatment. And so you know there are new forms of treatment coming out quickly so there will be more options on treatment soon. My liver specialist told me that i had the virus for 25 years. The damage was minimal in my case but nonetheless there was damage. Right now, my liver is looking pretty good. There is hope there are treatments. There is a light at the end of the tunnel and I promise you it is not a train.

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> You've landed in a good place here. There are people here just like you that have just been diagnosed. There are people who are waiting for treatment and some that have gone thru treatment already. There are also those of us who have completed treatment and are "cleared" of the virus. We have lots of information and a lot of support. We will help you. Feel free to ask what you need to or want to or just vent if you need to do that. We all have our moments here and everyone jumps in to help. I am currently facing a personal crisis right now, totally not medically related at all but these guys have been supporting me for a week now. They even got me to laugh while I was crying. We tend to joke around a bit... sometimes a lot. But laughter is a great medicine. You are going to meet some great people in the next few hours.. just watch your e-mail for the flood of welcomes.

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> Glad you found us... sending you a cyber hug right now cause I can tell you need it. Breathe sweetie breathe.

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> Hugs,

> Teri in Chicago

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> ________________________________

> From: sophiesworld3 <nod102@...>

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> Sent: Fri, May 21, 2010 8:13:01 PM

> Subject: [ ] Prognosis Question

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> Dear all,

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> I am 28 years old and new to this forum. I was diagnosed with Hep C at the end of last week (accidentally, after trying to donate blood). I've been to my doctor and found out today that it's Hep C 1b strain. I don't have any symptoms and the doctor said my liver is fine (not sure about the viral load yet). I'm not sure where to go from here... I was wondering if it is possible to be asymptomatic forever, or does the infection eventually emerge in typical cases? If I'm very "nice" to my liver, is it still possible to get cirrhosis/liver disease/liver cancer? If someone already asked this question before, would someone mind posting a link to it? I can't seem to stop crying all day - all I see is all this information about the poor prognosis of this type of hepatitis, and it's so discouraging.

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> Thanks!

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