Re: Introduction

[Guest guest]

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> Mike

> Well prior to treatment, I had a lot of fatigue, ....

Well Jackie now your my hero too. How the heck do you put up with all

that? People on here amaze me. You all been thru so much and still

seem so strong. Got my apt. on Monday to talk bout tx, that's my

intention -will see what the dr says. Maybe this is why the dr. hasn't

meantioned it yet. Don't think I could handle even part of what you

have. The only plus my daughter's boyfriend would like the med.

cannabis. How long can you live with cirrhosis? Crap shoot I guess.

Are there signs before liver failure?

Here's to all of you. Enjoy your day.

Debbie

[Guest guest]

Thanks so much for taking the time to explain what your ordeal was like. It sounds like you had quite a hard time with it, but I do know, from what you guys have said, that the treatment experience is different for everyone. I'm supposed to hear back from the nurse educator at the clinic in the next few days and will try to sort some of this out with her. At this point I feel much more informed about the illness in general but still need to know much more about my particular case. Thanks again, MikeJackie on wrote: Mike Well prior to treatment, I had a lot of fatigue, muscle and joint pain and actually believe that I had fibro as a child.. then,, after Interferon, I was left with SEVERE Fibromyalgia, SEVERE Chronic Fatigue, my immune system is in over drive causing Rheumatoid Arthritis, Sarcoidosis, I maintain an elevated Sed rate now as well as elevated C-reactive protein. My joints since treatment have really caused me a lot of problems,, have had both knee's injected three times with synvisc, had surgery twice on my right eye for the sarcoidosis, the Interferon caused massive

cataracts.. but the most disabling part is the joint and muscle pain along with the chronic inflammation throughout my body.. THEY NEVER TOLD me that I might end up like this.. Now remember, I was working full time as a 911 paramedic working 24 hours on with 48 hours off, and during that off time, I worked in a salon doing hair and nails AND I taught the EMT class at the community college... So I was very very active and thats why I felt my fatigue was well earned.. but it was, in fact the hep c.. the ONLY labs I had that were not normal were my alt/ast.. my bili and pro time (inr) etc all were normal,, my platelets were normal, my Alk Phosphatase was normal,, only my alt/ ast were elevated and at one point were elevated to 148 and 153.. but I was able to work my schedule and was a trainer for the ambulance service I worked for... then I started tx and by week 12 was so anemic that I couldnt get out of bed to run to the ambulance to run a call, even tho I had a

wonderful partner who took every patient and cleaned the ambulance up after every call and all I had to do was to drive... but I got to the point where I couldnt think straight and got very fearful that I 'might' harm someone by making the wrong decision about patient care.. I have not been able to return to work as I am only out of bed 4-6 hours per day now,, even nearly 5 years since I finished tx. I had to let my paramedic certification go because I couldnt keep up on the recert classes, I let my cosmetology license go as well because there is no way I could work in a salon even part time.. I take Morphine (120 mg ) per day for the pain I have and then because the morphine is sedating, I have to take Provigil to even wake my brain up or Ill never get out of bed.. Im in the hot tub sometimes up to 5 or 6 times per day for the body pain,,, I now use medical cannabis so that I wont have to increase my morphine dose.. My eye that has been operated on is

now at 20/100, at one point I was legally blind with 20/200 and so I no longer drive unless its an emergency. There is no way at night I could drive even IN an emergency as I have no depth perception in that eye any longer. Now that is only the most harrowing sides Im left with,, my brain and short term memory is gone.. I could not even tell you what I ate for Breakfast today if I had to,, in fact, I can't even remember IF I ate breakfast today! My husband has to stay on top of my meds, on top of my meals because I have no memory of them.. another reason that I could never go back on the ambulance.. and the depression that all of this causes is horrible! THEY DONT tell you about this stuff.. Most ppl do not have all of these as permanent side effects, but I DO know most ppl ARE left with some of them.. I know several ppl who NOW have MS from the Interferon tx and have serious brain damage from it.. BUT.. would I

treat again? IF my circumstances were the same with stage 3-4 with early cirrhosis and grade 3 inflammation, yes I would treat again... The hep was gonna kill me,, these side effects make my life miserable but are not going to kill me.. so yes, I would treat again IF everything were the same,, but IF I were stage 0 or 1 with grade 0 or 1, NO,, I would make sure I never drank another alcoholic drink, I would make sure I ate enough protein to allow my liver to keep on working, I would drink half my weight (pounds) in ounces of FILTERED water, cut out all sugar, all white flour, all fast foods, and make sure that my liver was watched very closely for changes and hang on for something better and more effective to come out.. but thats me.. as I said, I know many ppl who have treated with stage 1 or 2 and failed tx and their virus has mutated and gone on a rampage when it was fairly quiet before they tried to treat.. and I also know many who have successfully treated and

are able to get back to their ongoing life, even in spite of any lasting minor side effects.. I know one lady who was SVR for 10 years, went on an alcoholic bender for about 6 months and relapsed and had to treat again and is now 3 years SVR again.. but she has cirrhosis and is fairly sick physically.. Standard treatment is all there is for now out there to kill this virus.. They say there is no cure, only remission,, but its gonna be a long long time before we have a treatment that does NOT include Interferons and Ribavirins because the drug pharmy's have invested so much money in them and they 'seem' to be effective in about 50% of those who use them.. which is still better than any other tx for hep,, at this point in time.... So, that is why I really hope you get a biopsy so you will know just what the state of your liver is and IF You need to treat that you do so and have success.. Our forum will do everything we can to help you make it through tx should

you decide. We have spared many patients from further harm when some doc prescribes some drug like 'cymbalta' for depression when it clearly states on the box that its NOT for those with liver disease,, so we at least try to be your back up even tho we are not doc's here.. Janet , our original owner is an RN, Liz and I are ex paramedics so we do have 'some' medical background to help out and we know where to find the answers for you if you have questions.. Liz is in with some of the best Hepatologists in the states so she knows where to go for answers.. and I 'try' to be the best advocate for all here that I can.. Im NOT saying NOT to treat,, Im saying you should get all the facts before you make the decision and you should not wait for years to do that.. this disease does march on so its very important to stop it before it gets too far along.. before it does permanent damage... I was lucky in that all my cirrhosis is GONE.. per my last biopsy in 05! I caught

mine at the best time and I was very very lucky.. not all are,, so what I think one should do is to gather ALL the info before making the decision... I know that 'some' in the medical profession are still very ignorant about what this disease is and how one gets it.. I was also very lucky in that respect because my employer (AMR) was very helpful for me and tried to accomodate my treatment as best they could. I know that not all are as lucky, but what I was told is that I "MUST" tell the HR person IF I decided to treat because while on tx, I would be covered under the ADA bill,, but IF I chose not to tell them and they fired me becasue I could not keep up on my job etc, I'd have no recourse.. and no protection.. so I dont know where you live or what the laws are in your state, but I WOULD advise you to check this out because IF You do decide to treat, you would want to tell the HR person so that you will have this same coverage.. Im fairly certain that

it applies in all states of the US.. AND dont forget that you also have the FMLA if you needed to take some time off of work and be able to keep your job intact even tho the time you take off would be unpaid. You 'may' be able to work as per normal throughout your tx, lets sure hope so ,, but you should learn what your options are before you need them.. Im glad I checked so when I had to stop work, I knew I had short term and long term medical leave as a paid benefit. I hope this hasnt discouraged you too much but like I said, I believe we need to be informed, its too important,, I LOST MY CAREER's because of treatment.. I wouldnt want anyone else to lose theirs... Let us know what you find out when you discuss this with your doc,, what you might want to do is to go to the pharmy page and read the insert that is packaged with each dose of Interferon and Riba and see just what you ARE up against. If your biopsy comes back with early

cirrhosis or cirrhosis, then you would want to treat but by then, you'd already know the risks of treatment and the risks of no treatment. sometimes you just have to jump in with both feet and run the marathon.. we'll help you no matter what you decide,, hugs jax ps, Im sorry this is so long,, too much info for a short post! lol m human <heethun666> wrote: Jackie, If I may ask, what are the lasting side effects of the treatment? Of course that wasn't even mentioned as of yet, though the educator at the GI clinic might when we have our meeting. I am

going to grill her about all these details that have been left out. I've had this for a number of years and don't need to rush into this just because they're in a hurry ( and that hurry of theirs makes me question their motives big time). I'm glad to have this list to find out more about this. I work in the OR of a hospital but can't really tell anyone there that I have this. It's surprising the number of people there that are irrational about disease and would probably treat me hugely different, as if I had some sort of air born koodies. Thanks, MikeJackie on <redjaxjm> wrote: well the truth is that 80% of those infected with hepc will become chronically infected and of that 80%, aprox 20% will continue on to cirrhosis and then some of those, maybe 5% will end up with End Stage Liver Disease and HCC or liver cancer. The odds of getting it ARE greater in those of us with liver disease than those who do not have it.. Hep C 'typically' progresses to stage 4 in about 20 years altho I DO know several folks who have had hep c for MORE than 30 years and are still stage 0-1 of 4 so they essentially have no damage and the grade of inflammation is very very slow for them too.. I wasnt so lucky, I'd had it for 23 years before I got diagnosed and I was stage 3-4 of 4 with early cirrhosis, and my grade of inflammation ( kind of how fast its moving along, rated as a grade 1 through 4 ) was a grade 3 so it was moving

along. SO I HAD to treat with early cirrhosis,, and I had the genotype that was most difficult, I am geno 1A and my gastro didnt even want to bother treating me,, I INSISTED,, and while HE did everything to make me fail tx, I refused and only BECAUSE I'd learned so much about hcv, I was able to be my own advocate and demand what I needed,, About half way through my tx, I fired my gastro as he was making it so much harder for me than it needed to be so I went back to my Primary Care and he did whatever I needed in order to finish tx and I was successful,, like I said, inspite of my gastro.. But knowing what I know now, if I'd been only a stage 0-1 or even a stage 1, I probably wouldnt have treated then because I am left badly damaged from the Interferon and Riba in ways that will never get better. I was 48 at the time I treated and far too young to be so disabled. So the best advice I can give anyone is to get that biopsy and learn everything you can about

tx.. BEFORE you treat so that you can know exactly what you need and make sure your doc is the right doc who WILL give you what you need and not simply lower your doses or stop your treatment. Lots of docs simply wont prescribe procrit or neupogen for anemia or wont give you pain pills, or sleeping pills or antidepressants even tho sometimes they tell you that they will before tx and then change their minds afterwards at the very time you need it,, just ask a few ppl here about that! I was lucky in that I'd had a personal and a professional relationship ( I'd been a 911 paramedic for 15 years and took many patients to him in the ER) with my doc before I treated and he was straight up with me and gave me what I needed. So if you do not feel that your questions were not

adequately answered to be able to make the decision about tx, then stand your ground and make him answer them.. NOT everyone gets liver cancer but treating it CAN reduce your chance of getting cancer even if you dont clear.. but remember the docs are 'relying' upon the promotions of the drug pharmy's and have not researched this treatment themselves,, oh how I wish the docs would have to take ONE weeks worth of tx before they make anyone take it.. lol,, guess Im pretty mean eh? anyway,, make sure you get copies of all your labs, biopsy's etc and keep them at home,, and read read read,, everything you can get your hands on about this disease and treatment,, its so important! and keep on asking questions,, Oh and the fatigue, IS PROBABLY related to the hep,, I had fatigue and joint pain before I was diagnosed and I felt, like you do, that because I was working 3 jobs, that I deserved to be tired,, but it was the hep c,, Im so glad my doc checked it

out and so glad I had that biopsy! jaxm human <heethun666> wrote: Thanks so much for your perspective on this jax. I have some doubts which I expressed at the time the doctor said it should be treated, most of which I don't feel were adequately answered. One question was is my individual case bad enough to warrant treatment. I was told that hep C leads to liver cancer and since I have the most treatable form I should treat it. That didn't really answer my question as to how bad a case I have. I do currently have fatigue but believe that my hep is asymptomatic and the fatigue is just a result of something else, like working very hard 45 plus hours a week.Jackie on <redjaxjm> wrote: unfortunately, the ONLY way to know the stage of damage you have or do not have is via biopsy. Ultrasound is almost useless as far as damage goes,,, its only use is to find large tumors or lesions. The last time I had an ultrasound, there was a handwritten note attached from the radiologist who said that the ultrasound was NO WAY to tell what is what in the liver,, especially as far as histology goes,, one would need an MRI or CT scan,, but all in all, a biopsy is the only way to really get a good look at the cells and see what is what. I had mine with 'conscious sedation' so that I dont even remember it but I was able to follow the command to hold

my breath when they took the sample from my liver. They allowed my husband to be present as well. So I hope your docs will do one before you start tx to see if you really must do treatment at this point in time. Treatment is very difficult for most,, now I know that 'some' ppl are able to continue working , I was not one of those, I became so anemic that I had to stop work, I couldnt even walk to the bathroom without becoming totally exhausted and short of breath. I have known some folks who were able to keep working because they had a desk job and it did not require any physical abilities. So if you are not in a very 'stable' place in your life, sometimes if you dont have a lot of damage, it can be wise to get things in order BEFORE you start treatment. I would be extremely frustrated if those who were going to treat me did not speak English very well,, because I would want to know for sure that they would be treating any side effects once I

started tx because there are some docs who will either reduce your doses of meds , stop them all together for a short time or stop your treatment completely and thats NOT a good idea once you start tx as the virus can and might mutate thereby causing you to be unable to get rid of it at any cost.. Treatment can be deadly too and it can leave you with permanent damage as it did me.. But I was able to reach SVR which IS the goal, so I guess the trade off is acceptible for me anyway, but I do know some who find the permanent side effects more disabling than the virus itself.. MY GOAL here is to make sure that everyone makes an informed decision about treatment because in my opinion, treatment is NOT for everyone. You have a good genotype cuz 2 is easier to treat and is more successful than genotype 1 which is what I have. However, that being said, I DO know several ppl who treated and relapsed or did not reach SVR with geno 2. There is much to learn

before starting tx and I hope you dont let anyone push you into treatment before you know all the details and facts.. but the first thing would be to get a biopsy unless you are convinced that you want to treat no matter how much damage you do or do not have. I hope that makes sense... please feel free to ask any questions as you go along and we'll try to help you! jax m human <heethun666> wrote: I know I have genotype two but don't know much more, like the stage or how much damage. I haven't had a biopsy but have had an ultrasound done. None of the doctors at the GI clinic I go to have

English as a first langauge so it's sometimes frustrating talking to them. I did meet the nurse educator the last time there and hope to get more information from her. She is calling my insurance company and a pharmacy to get me going and has invited me to bring my girlfriend or whoever to our next meeting to talk about everything entailed. Jackie on <redjaxjm> wrote: welcome to the group Mike! Well it sounds like you are taking all the right steps in order to better your life, now we just gotta get

rid of the virus.. you are right, everyone experiences this tx differently but there are some things that tend to be common among most of us.. like fevers, body aches and flu like symptoms while on tx and there ARE things you can do to help alleviate these symptoms such as drinking enough filtered water, gettting enough protein as long as your liver allows it, eating well, taking good care of yourself and making sure you take your meds EXACTLY as prescribed,, You said you were taking 6 months of tx, so are you genotype 2 or 3? How much damage do you have? What stage is your biopsy? Please feel free to ask any questions you have and we'll sure try to help you get answers.. the other thing we always tell folks is to get and keep copies of EVERY lab and biopsy you have,, keep it in a file at home for easy access.. seems we usually have questions either after 5 pm or on weekends,, lol,, so having them on hand can help us find

answers for you! once again, welcome! I am Jax or jackie, one of the co-owners and a successful treater and am nearly 5 years post tx SVR.. it can be done,, jax heethun666 <heethun666> wrote: Hello,I have had Hep C for years and am just now about to start treatment after finally getting insurance, going through finding out what genotype I have and talking it over with the doc. I've heard from famly and friends (so many of the people I grew up with have this) some of what to expect over the course of treatment but imagine that I won't experience this in quite the same way that anyone else I know

has.I'm also starting back in school (I"m 46 and returning after many years) Monday and am not sure how that will go. I work a very active job in which I walk about 8miles a day, five days a week and have to be on my toes, so that's a concern for me also.I quit getting high about two years ago and have taken so many measures to improve my life. I hope that this is just one more of those efforts and after the six months of treatment will be healtier, happier and wiser.I appreciate having a forum to discuss these experiences with others in the same boat and look forward to meeting you all.Thanks,MikeJackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Jackie Looking for last minute shopping deals? Find them fast with Yahoo! Search. Jackie

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[Guest guest]

I have personally invited Louise here, and so let us please welcome

her.

Administrator

" Hi. My name is Louise. I've been a member of the FamForum for over 2

years and Tom was kind enough to let me join your forum. I'm the

mother of , a 23 year old diagnosed with AS when he was 18. My

partner and I are also parents to , age 31 (undiagnosed Aspie),

, age 25 and , chronologically age 20, but developmentally

an

infant. He has a progressive, terminal illness (epileptic

encephalopathy) and we've been constantly battling with his nursing

home facilty to get proper care (including pain management)....but

that's a subject for another time. While I'm not sure whether or not

anyone would officially diagnose me with AS, I definitely have

multiple

characteristics. I've learned so much through the FamForum, both about

and myself and have received support I could never find

elsewhere. I'm looking forward to my membership in this list. "

[Guest guest]

Hi Louise. I'm . I'm 43 and sort of self-diagnosed/not-yet-

officially diagnosed with AS. I have three daughters ranging in age

from 3 to 22. I'm pretty sure the older two are NTs but I'm not yet

sure about the 3-year-old.

>

> Hi. My name is Louise. I've been a member of the FamForum for over

2

[Guest guest]

>

> >

> > Hi. My name is Louise.

Welcome to the group.

Mimi

Mimi is 39 in college again and going through finals.

[Guest guest]

> Mimi is 39 in college again and going through finals.

I'm so proud of you Mimi! Good luck with all your tests.

Kim

[Guest guest]

As you can probably can tell from my responses, I'm reading my emails

in a " backwards fashion " (most recent first). Anyway,Thanks for all

the welcomes....I too think I'm probably an undiagnosed Aspie...or,

if not, I sure have a lot of traits!!! " Hi. My name is Louise ... <snip> ... While I'm not

sure

> whether or not anyone would officially diagnose me with AS, I

> definitely have multiple characteristics. I've learned so much

through

> the FamForum, both about and myself and have received support

I

> could never find elsewhere. I'm looking forward to my membership in

> this list ... <snip> ... "

>

> Hi Louise and welcome to FAM Secret Society. Just so you know, I

> consider you to be an undiagnosed Aspie. :-)

>

> (((HUGS)))

>

> Raven

> Co-Administrator

>