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    Old 06-14-2005, 04:09 PM   #1
    Debbie222
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    Stage 4 chirrosis

    Hi,
    I am hep c geno type 1a and stage 4 of chirrosis.I was wondering if anyone is going thru this thing too,,and how fast does this progress to the end?
    I dont know what to expect as the disease progresses.i am already taking 280 mg of fluid pills for swelling in my ankles and legs,and some antidepressants as this is getting very hard for me deal with.I'm still working 3 days a week in a nursing home and 8 hrs a day is really getting hard for me to do. I hate to admit that because then i feel like i'm admitting defeat.My doctor says im not able to have a transplant because i also have empezema(sp) and also the the hep c will reattack a new liver harder.
    So if anyone can talk to me or has any advice,,i would really appreciate it.
    thanks
    deb

     
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    Old 06-14-2005, 07:08 PM   #2
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    Re: Stage 4 chirrosis

    Hi Deb,
    I'm grade IV stage III ( biopsy from 2002 ). Hepc, genotype 2b. I found out from a weird rash on my right shin. Did the pegintron w/ rebetol chasers in 2003. Beat it , but had other complications come up. Anxiety, depression, isomnia, hypothyroidism, eye problems and skin manifestations. I'm now becoming concerned because my ankles are swelling daily now . Do your hands and tummy swell as well? Recently, my face and eyes are swollen when I wake. Do your fluid pills help? I cut back on salt and I find that if I dont eat or drink after 6 or 7 pm the night before , the swelling isn't so bad the next morn. I've started taking milk thistle and I've noticed that I have somewhat more energy. I tried a B complex and they definatly gave my more energy. TOO MUCH!I was making myself exhausted because I couldn't sit down. :> 8 hrs on your feet must be very hard. Can you elevate your legs a few minutes every hour or so? Have you tried support hose? Are you on oxygen for the emphysema? I was surprised by the results of my liver biopsy, cirrhosis is truly a hideous (sp?) disease. I had no idea my liver was in the shape it was. How about you? How did you find out etc. , if I may ask.The only advice I can give is to eat right , drink lots of water, and treat the syptoms as best as you can. Hope this helps. There are many going thru the same as you , you are definatly NOT alone.
    margaret

     
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    Old 06-15-2005, 08:52 AM   #3
    Debbie222
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    Re: Stage 4 chirrosis

    hi,
    I found out about mine when i went to the doctor because i was totally exhausted all the time,they took blood,enz. high,,my first bio was in 2002 then i was stage 2-3,i did the treatment, which by the way was horrible,i was given the highest dose they had,so i got all the body aches,headaches,blurred vision,alot of depression,,lost half my hair and got big sores at the injection sites.which the dr said he had never seen before. i had my second biopsy last year and i had already progressed to stage 4 with inflamation at stage 3.the fluid pills do help some,my legs and ankles arent quite as bad as they were,and yes my hands and face swell too.I dont know what to expect next and thats kind of scary.Its hard to talk to any of my family,my hubby acts like it doesnt exsist, and the rest just dont want to talk about it. Thats why i love my job,it keeps my mind busy.they are really good to me there,they let me sit any time i need to.
    Did you do the treatment? Did it help you at all? have you any confusion yet?
    i thought i was getting alhiemer(sp) i couldnt remember how to double a recipe.thought i was going to work the wrong way.it sounds funny now but it was scarey at the time.
    no im not on oxygen yet,i do have 3 different inhalers i have to do.
    well im running away at the mouth here,its just so good to talk to someone.
    i hope you all the best and if ya wanna talk any time,,im here.

     
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    Old 06-17-2005, 05:40 AM   #4
    margosuperstar
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    Re: Stage 4 chirrosis

    Hi Deb,
    Yes , as I said I did do the treatment .Because of my geno (2b),I did 26 weeks, and tests up to 1 yr later showed I was still clear. I've only had 1 biopsy and that was pre-treatment. Did you clear the virus after the treatment? My family has been great ,but sometimes I think they forget whats happened. I do feel exhausted, I am swollen most times and when they see these syptoms , they seem to not want to acknowledge it. As hard as it is for us , its just as scary for them . My doc did insist on counseling before I started the treatment and that doc started me on anti depressants and anti anxiety pills which I did thru-out and even continued after completion of treatment. When I stopped the anti's, alot of the forgetfulness and confusion subsided. But, yes I feel that I'm not as alert and "on the ball" as I used to be. ;] I really took advantage of my couselors time and talked her ear off lol. It's great that you can take little breaks at your job, definatly use that to your advantage. Put your legs up whenever you can to help ease the pooling of fluid in your legs and feet. Sometimes we put ourselves last on the list and everyone else first, ie. hubby, kids, errands , pets and whatever else. But , you must add your health and well-being to that list and consider your needs (health,mental and emotional) high priority. I dont know what to expect next either, and that can be frustrating and scary. I try to just "keep on keeping on" :> I do have bad days where I just feel like running away so I do...to the movies or the malls or sometimes to my bed and put a do not disturb sign on my door .My kids laughed at that one, but they roll with it. I have to close now, but look forward to hearing from you.
    take care,
    Margaret

     
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    Old 06-18-2005, 05:36 AM   #5
    Debbie222
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    Re: Stage 4 chirrosis

    Hi Margaret,
    No i have never cleared the virus,so it seems i just did all that for nothing.
    so basically they are just monitoring me now.they do blood work every 2 weeks to make sure my potassium isnt going out of the roof with all the fluid pills.i think they want to do another biopsy and check for cancer,cause some test come back elevated.an aft or something like that.it all gets confusing sometimes.
    im happy to hear you came back clear,did you have any damage to your liver?fibrosis?Oh heck i just read back and you did say you were stage 3 sorry,my memory not so good,,dont know if it illness or age lol.Some people ask me why im still working,i guess they dont understand,if i quit what would i do,,sit home and wait.geez this thing eats away at my head enough as it is.I'm gonna work as long as i can.how often will you be tested now? I wouldnt let it go too long, esp if your symptoms increase. have you had an endoscopy done? were the results good?
    well margaret it is great talking to you and look forward to hearing from you again.Have a Great Day
    Debbie

     
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    Old 06-20-2005, 10:14 AM   #6
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    Re: Stage 4 chirrosis

    Hi,

    My neighbor found out she had hepatitis in 2000. I don't know what stage she is in now. I help her out when I can. She has been suffering for awhile now. She was getting her stomach tapped to remove fluid. She doesn't have fluid anywhere else. She is so miserable. Her belly is to the point where she started wearing maternity clothes. That was my idea. None of her clothes fit anymore. Now at least she can wear clothes that are comfortable again. Her doctors won't give her anything for pain. They say she abuses them. So she has a drink of gin daily to help her get by. She was told 2 years ago that she had 6 months to live. She is still very much alive. She is scared though. She thinks that some morning she may just not get up. It's so sad!!! I was wondering if any of you knew of a specialist in central Illinois. She has went to Springfield, Carlinville, and Litchfield. All the docs she has seen seem terrible. They don't help her with anything. (In my opinion) I don't know what steps are next and I know it is a scary situation. She is scared to have any more fluid removed because her brother's last girlfriend was in the same spot she is and went to have fluid removed and didn't make it out. She is so scared. I don't know what to do for her. There is nothing I really can do for her. I am just trying to be here when she needs a friend or a shoulder to cry on.

     
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    Old 06-20-2005, 09:07 PM   #7
    Debbie222
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    Re: Stage 4 chirrosis

    Hi,
    your friend is very lucky to have you there for support.Has she had a biopsy
    on her liver done.Did they do a diagnostic test on the fluid that was removed?
    I have some fluid build up in my abdomin,but not enough for a stomache tap,,at this point i think the fluid pills help alot.As for the the docs not giving her pain medications,,she has to remember that everything she takes goes thru her liver,and pain med,is not a good thing,but then neither is the gin.
    I take it your friend doesnt work? which is ok of course,i couldnt work when i was on the treatment,and that really made it harder for me,cause all i did was sit and wait.That is not a good thing for me anyway.All i did was concetrate on how much it hurts,how bad i felt etc.I dont know maybe if your
    friend has something to do,,even researching her disease,it will help ease her fears some.This is a scarey time,i have my ups and downs,but i have accepted it.A good friend told me,i quote"one thing for sure is your not going anywhere until the good lord is ready to take you home" unquote.
    I dont know if i've been much help to you, but i do know that your friend should be very thankfull that she has a friend as you.Good luck and i hope the best for your friend.
    deb

     
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    Old 06-20-2005, 09:30 PM   #8
    young momma
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    Re: Stage 4 chirrosis

    She is at the point now that they don't really pay much attention to her. She doesn't work anymore. She tries to keep herself occupied. It gets alot harder in the winter!! The way I see it now is she is gonna die regardless. They should at least let her live her last years without pain. It is too late for anything to help her. She is trying to enjoy her life while she still can.

    My husbands uncle, on the other hand, recovered! They caught him early enough. It has been 2 years and still no sign of it. He had a transplant and did all those dreadful treatments.

    Oh, I forgot to put in there, my friend also has hepatitis c. Her doc isn't sure if that is just from the chirrosis attacking her liver (or vice versa) or from other reasons. She is in a terrible situation. We learn from our mistakes and other people's mistakes.

    How is yours going now? Are you feeling any better? I hope so. It is an awful disease. They all are though!!

    Goodluck!!

     
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    Old 06-21-2005, 05:41 PM   #9
    Debbie222
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    Re: Stage 4 chirrosis

    Hi again,
    in my case ,i got the chirrosis from hep c.I dont know what kind of doctor she is seeing,,but i would suggest she find another.I have a wonderful doctor,,i do what he tells me to and he is straight up with me.BUT she has to stop the gin...all that does is make the liver worse.why has she not looked into a transplant? But in any case i would think there would be something else they could do.In my case i have other illnesses that stop me from getting a transplant.I think they think the livers should go to people who are otherwise healthy.and i guess i agree with them,,even tho its bad news for me.
    oh Congrats to your hubbys uncle!! hope he has a long and healthy life!!
    well good luck with your friend,and let me know what happens.

     
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    Old 06-21-2005, 07:10 PM   #10
    young momma
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    Re: Stage 4 chirrosis

    Her liver is too far gone with both diseases attacking it for so long. She has known for about 7 years now. No insurance, too young for state assistance and no kids under the age of 18. She now has assistance. At the time she found out though nobody would cover her. It was a lose lose situation. Really sucks. You know there are so many people scared of AIDS and have no clue about hep. c. It's really sad. They had her on a morphine patch but it wasn't helping with her pain. She has gotten used to most of it but her leg cramps are getting worse. She was also on anti-depressants. She took herself off of those. Her doctor is mad at her because she has a drink a day. That is another reason why he don't care. She is just so miserable though. She has her ups and downs. It's hard on me to see her where she is. She is 54 years old and I'm only 25. So, most of what I say about her drinking goes in one ear and out the other!! lol!! I'm just a baby to her.

    I'm not sure how long you've had it. It sounds like you are still in early stages compared to her. I hope you are enjoying your life. Life is so precious. We all take it for granted. Get the most out of your life though before you get so miserable and don't want anyone to be around you!! She likes people to be around her! She just has those days! I would too. Keep your spirits up! Take care of yourself!

     
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    Old 06-24-2005, 10:22 PM   #11
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    Re: Stage 4 chirrosis

    Can I ask how long you all think you had hep? And also can I ask what your biopsies showed before tx? and also can I ask what your lifestyles might have somewhat been like up to that point? I ask because my husband just took his first shot today and I am not far behind him. We both have had it for about three years and i don't think either of us have any damage to our livers. we are both 3e. I don't know what that means anyway. I don't get this desease. it has not pattern. you don't hear the same thing from anyone it seems. same experiences in an amount of time or anything. i keep looking for that. i want to know how long it took for you guys to get those symptoms.

     
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    Old 06-26-2005, 07:00 PM   #12
    Debbie222
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    Re: Stage 4 chirrosis

    hi jesse,
    i have known about the hep C for about 6 years now.My biopsy showed i was in 2-3 stage fibrosis before treatment.I did the treatment for 12 months or so.
    I still came back positive for the hepc.I had another biopsy and showed i was stage 4 chirrosis. When i was a teenager i did what most teenagers did in the 70's,but i had not had a drink in the last 15 years.As with any disease, everybody reacts different.I am 1a which is very hard to treat.you being 3e,you have a better chance of the treatment being a success. my hep c is progressing rather rapidly,,or i should say is causing liver damage rapidly.I think the symptoms are about the same with most people.The fatigue.retaining fluids,but it could take years or just months,or maybe not at all.I would say that the fatigue started for me about 2 years ago,now i have the fluid in my legs,feet and abdomin.along with confusion and memory loss.But this is not something you should about now.with no damage to your liver,,you will live many many years.let me see if i can explain the geno types to you. Geno type is like ,say a tempature except 1 being the worse. then there is 1a 1b 2 2a 2b 3 3a 3b etc.im not sure how far the numbers go,but yours would be like a 99 degree temp.Im not saying you shouldnt be concerned (it is your health),because we all are.And it is great that you are researching your disease.there is alot of sites that can real helpful,and some that show a pic of a disease liver and what hep does.I dont know if this has been any help to you,but I do hope you treatment goes well for you and your hubby,and you both comeback clear.
    Good Luck,

     
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    Old 06-27-2005, 11:07 AM   #13
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    Re: Stage 4 chirrosis

    thank you for replying. I know that the geneotype is a strain. I get that but I guess what i kind of did not get is how it effects the body differently if at all or do they only refer to those as being different as far as treatment and effectivness goes? So basically are you saying you got hep in the 70's you think? I know this scares anyone who has it but I think what scared me is the fact that I just had a baby (that is when i found out i had it) and the thought of not seeing him get married and have kids of his own scares me, as with anyone I am sure. I guess I wonder how long it really takes to start effecting you if you make a choice to live the right way. I am sure there is no answer to that realistically because everyone is different. Good luck with everything. What vitamins do you take? Do you take milk thistle? Slowly over the last year I have been trying to covert my life to a liver and heart friendly life. It has been a slow process so far. So far the furthest I have gotten is converting my eating habits from extremly awful (fast food three times a day) to fast food once every three weeks or so and eating very healthy at home. I am pround of myself for that. Next I need to quit smoking cigs, and I do drink occasionally but for the most part not much or often. So right now I need to motivate and quit smoking and start exersizing. That is a huge thing to tackle for me. My husband and I were herion addict going on almost 4 years ago now. That is how we got it. I know exactly when and where we got it too. It was at the end of our use. The very end. I will never know for sure but I think i am right. Since then we happened to get clean (went to jail) and stayed clean. Our whole lives have changed dramatically over the last four years. It has been drastic change immediatly (no drugs) and slow changes of improvement over the years. And the changes continue. But when I think about quitting smoking too it is not appealling. I feel like , I have already done all of this and now i have to quit smoking too??? I know but still. I am rambling.....thank you and god bless

     
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    Old 09-20-2005, 03:14 PM   #14
    young momma
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    Re: Stage 4 chirrosis

    Hey Debbie! How are you? I haven't seen you post in awhile and was wondering how you had been feeling. I hope everything is going okay. I know it's not great. Heck, an okay day is better than a bad one!!

    Take care,
    Angela

     
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    Old 12-17-2005, 10:03 AM   #15
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    Re: Stage 4 chirrosis

    Wow this is an old post. My hubbie just finished tx and i am about to start. He did great through it. He tested negative on the viral load from week four on. We will see what happens in six months.

     
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