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Well, that's my story and I'm glad I did it.
hope this helps,
Beagle
my story is i got hep c in the 60 s doing drugs. i have had it for 37 years and am at stage 3.3 mostly due to bad living style.
i had a bx 9 years ago and was 2.2 so i chose to wait for better drugs and am glad i did. if i were still at stage 2 i would not be treating as i really believe in 3-4 years the tx will be almost painless and 99% effective. this opinion is not held by all but it is mine. i think the big determining factor is liver stage and if you can wait or even want to wait. please do not jump into a decision without thought. if you need to work during tx. presents a new problem. whatever your decision stick close to this site for support and keep us informed as we care.
do not let even a single day be ruined by fear of this or the disease is winning.
bobby
For most of the last 37 years, I didn't know I had Hep C and I think that gave me a different mindset than most who get Hep C as an initial dx. I simply went on with my life as normally as I could and after a few years hardly gave it a thought. No After all there was no treatment, so why give it any thought. Plus no Hep C "stigma" in those days cause there was no Hep C.
Finally, Hep C was "discovered" and I figured that's what I had and got tested. Unlike most, there wasn't any "shock" when I found out I was positive -- for me it was an old story and an integrated part of my adult life.
I then spoke to several well known hepatologists and they didn't like anything they were seeing in this country regarding treatment. The odds were bad, the treatment worse, they said. So I didn't treat. My general health was excellent, I wasn't on any medications and I routinely participated in endurance sporting events.
Three years ago my latest liver biopsy showed stage 3/4. I was under the impression I was between stage 3 and 4, so decided to treat. In reality, I was a stage 3 out of 4 possible stages.
Three years later I started treatment. At that point, I figured I couldn't wait any longer given my previous stage 3 biopsy. Looking back, it was a conscious decision to wait until the last possible moment. I think a part of me knew what treatment had in store for me, and treatment did not disappoint :)
Now I'm in a waiting game. Tx is over but still don't know if I'll SVR. I also don't know if my previous vigorous health will ever return in large part because of the treatment drugs. In any case, there will be no regrets, because at this point I really didn't have any choice but to give it a shot.
For those with little or no liver damage who do have a choice, I say think long and hard before trying to slay the dragon. Sometimes it slays back.
-- Jim
Twas youthful follies 30 years ago. I’m 52 liver’s not that bad, 1-1. Found out back in 2000. To me this is a business type decision. Based on current liver condition and Q of L I’ll continue on for the full 48, (currently at 28) Will probably make adjustments to meds as needed to try to insure my brain still functions long term. If I fail svr, well that’s fine. I’ve never been concerned about that. I’m used to pulling out of situations or adjusting risk exposure based on conditions. And fortunately my liver will still allow me to do that. And other tx's are in the works.
What a beach not being able to do the things I like to do though.
-- Jim
Ron
Why did I treat? Mostly for my husband who is 59,1b and did not have a choice due to liver damage. Would I do it again? Not sure. I may have been more help to him a healthy person. I could have waited for a more friendly treatment.
The last few weeks have been a rocky ride. I think I feel good, then I know I feel bad. The brain has stopped working and sadly I don't care. I'd rather be sailing.
And where theres a will, i want to be in it.
MY best estimate for initial exposure is Thailand 1975. Drugs were plentiful and cheap and I was an 18 yr old idiot. After returning to the US there was no additional exposure. As luck would have it , I also got a tatoo in Hong Kong that same year and it has really helped in trying to explain to my 15 yr old son how I got into this mess.
timedog , the next lines are in response to your statement about the BHS.
"They were all in love with dyin'
They were drinking from a fountain
That was pouring like an avalanche
coming down the mountain"
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I always thought stage 5 is when we guys start putting on the mascara. Fortunately, I'm only at the night cream stage.
On a more serious note, I do agree -- given current drugs -- that stage 2 is a good time to start seriously looking at your options, be it to treat of wait awhile
-- Jim
_____________________________________________________________
Your thinking of perfume there jim, or janit. Was it the tx or the moths that pushed you over the edge?
I have developed Neuropathy from the meds. My feet, legs and right hand have been effected.(numbness). I have fallen 8+ times, as my feet & legs go numb after a short period of time. I never know when this is going to happen, so it keeps me close to home and if I am out I am always looking for the closest seat. Not a good way to have to function. I also have lost some of my short term memory & I seem to have a problem formulating the proper words. Fatiuque and shortness of breath still occur on Pegasys maintainence.
I am excited about the new meds coming on & I pray that they will reach survival for everyone & be much easier to tolerate.
It has been an unbelievable roller coaster ride for me.
Once the serious risks of the interferons today are taken into account, it is my opinion that these drugs were not ready for "prime time." In the bad old days, Doctors were the sole proprietors of medical knowledge, which they doled out sparsely. Today's patients are more likely to believe that our health is in our own hands. With that, comes the belief that we must do our own statistical analysis & risk-benefit assessment. I feel this shift in info and decision-making was supposed to be empowering. It often is but the flip-side is we can also end up feeling confused and responsible.`It puts an incredible burden on us.
Well-I've done my high-risk assessment-(after 120+weeks of treatment) factoring in the best of my knowledge-and come up with an answer--Wait. This is not very everyone & millions of people will be making their own decisions. If we reject a drug which might prevent or cure Hep C, are we asking for it? If we take a drug with serious side effects, are we choosing them? These are queasy and very personal questions.
Until, we finally get a real, serious "breakthrough",I will elect to wait and lead a functional, as close as possible, life.
This is only my opinion & of course everyone is entitled to theirs, and if you are on treatment or starting, my wish for you is SVR. It obviously is attainable for some & God bless them.
Sandy
Just curious, Best to you
I don't post often but here goes
I am 41, F. geno 1a
i found out i had hep-c in 91, when i donated blood, had bx all was good. doc talked to me about tx but i was not intrested. then in 99 while i was haveing surgery i aked for another bx still good 1-1
as i said i am 41, and the more i thought about it the more i worried. my fear was that if this progressed in the later years would i be able to handle tx then. age has a way of making us think about such things.
so i decided to do tx now instead of waiting till i had no other choice i just decided it would be better now than later
i am on pegintron full doseand 1200 riba a day
i am 16/48 will do # 17 tues
i have had tough sides and many, but nothing i cant handle
my blood counts have dropped but veryy little compared to others here for me its enough to feel but not to treat not yet anyway
but they are dropping so i know its only a matter of time
iam really not sure how i got the hep , i think i know but will never be sure, anyway it doesnt matter i know have it.
i was undetetable at 12 weeks and will do all 48 weeks
thanks for shareing
hoping all a great week ahead
Dee
beagle
Stage 1, fatty liver, great health, very active, busy job. I knew for 8 years before I treated. I finally decided to go for treatment because 2 of 3 docs said I should--mostly based on my genotype (3a is easy, right????) and their belief that you really oughta get rid of this virus if possible. I have two kids (8 and 10)--and I couldn't risk dying on them.
I didn't know about this board before I started treatment. With this board AND with my own personal experience at week 17/24, I wish I hadn't decided to do this. I'm too far into it to back out now, but I really think the costs (long and short term side effects) outweight the (possible) benefits for me. I would wait on better drugs.
I cleared each time but virus returned. As far as I can tell, I got it from my best friend who returned from Vietnam with a pretty nasty case of Malaria, HepC and some serious brown dope. We sat in a park for a couple of weeks until he went off to the hospital and me to rehab. He died in April 2005.
I started my fourth course of tx in July 2005. I was really sick although my biopsy revealed 2/2 but my quality of life was really poor, and was becoming more and more isolated and depressed. Started tx with 5.5 million. Alt/Ast really high. Within a month I cleared and enzymes normalized. As bad as tx has been at times, it is nothing compared to how I felt before I started. Taking action is always better than sitting and doing nothing. Thanks for this thread. Thanks to all of you for your amazing compassion and insight. This is almost like finding a really good AA group.
Since then, he had the usual tests...genotype 1b, viral load over 9 million, liver biopsy – mild - #1.
We have been together for 15 years. He was in the Navy and has a few tattoos (prior to 1990), he has had a blood transfusion prior to then, had some major spine surgeries when I have been with him...bottom line, we don't know when he got this, but he says it is possible that it could be 20+ years.
So he decided to treat. He does not do the internet, etc., just knows the basics and whatever I can gently get through to him without freaking him out. Sometimes I think he’s better off to tell you the truth. First shot was Friday. Flu-like symptoms so far. They are worried because he has chronic lower back pain, and his rheumatoid factor is high (46) although he hasn’t been dx’d with rheumatoid arthritis (yet). So they are watching. He has a very good attitude about all this so far…says he wants to get rid of the virus…hopefully, that will happen, although I know the odds aren’t as great for 1b’s and with his viral load…will see what his blood work shows in three months and go from there.
Good luck with your treatment!
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Oh GEEZ, you don't see us with that hose and bucket going door to door playing red cross
The Blood Baron
Stage 2,Grade 1. I went for a second opinion because the first physician suggested a wait and see approach. She is a GI doc with a lot of experience working with Hep C patients. I asked her the usual question about....if I was your sister, how would you advise? She said she would currently advise against it if I was her sister. I went for a second opinion to a noted hepatologist at a larger institution. I had my bx slides sent for examination. He said that his pathologist consisdered the stage to be more like a 1. He suggested that I should get treated because right now I am healthy and tx is harder as one ages. He said I might be precluded from treament in the future if other health issues complicated matters. I did find out that he had a clinical trial going on comparing hispanic vs. caucasian response to current treatment. I think he genuinely wanted to offer me free treatment, but I also think he had another agenda as well. Ultimately, I have taken a wait and see approach for now. Like many others, I am praying that the newer protease inhibitors will at least cut down on the time interferon needs to be taken. I am also hoping that the Ribavirin will no longer be required to get rid of this darn virus. I pray these meds will be the miracle that the pharmaceutical companies are building them up to be.
Probably got the virus 24 years ago from a blood transfusion.
Got sober cause I needed and wanted it bad enough. Took 12 detoxes between Dec 2002 and May 2003. Got a letter from one of the first ones in ’03 telling me I probably had hep c.*
After my last drink in Aug ’03 spent til Sep ‘05 working on sobriety, life, and preparing mentally for tx, with support groups, therapy and the meager research I managed on the web. Found this forum day of shot#1.The fatigue was the only symptom I noticed and was the main catalyst(along w/being infectious ) to seek treatment and try to improve QOL. Single Dad living w/14yro son and 83yro Dad. Wasn’t sure if tx was right for me at this time but realized there may never be a better time.
*Note: from 1993 til 2000 I didn’t drink and couldn’t figure out why I was so frikkin ired every day despite a pretty healthy lifestyle. When I first read about hep c in I thought-bingo.
Last night was shot #32, 180mg pegasys, 1000mg daily of ribavarin. 12wk pcr-291,000. 24wk VL was 3140. Will get a 36wk and plan from there. Have been pretty fortunat with sx, though I've had my rough periods with the itch, rage, and fatigue and always, always ache. Still working light to heavy construction about 25-30hrs a week, and doing art work. So far no ADs or rescue drugs involved. Last month cbc was at 10.9 from 14.4 at start. Awaiting this mos cbc results.
Have days where I second guess decision to treat now. Then I come here or step out into the world and realize I've got no control over where this disease takes me, only over the path I take to get there and how I walk it. Right now I just figure I’m one of the most fortunate b***tards alive.
Thanks for the thread,
Peace and wellness,
Don
should have read 12 detoxes between Dec 01 and May 03. That means I first found out about the hep around Sept of 02. That's 3 years before I felt ready for treatment.
FOUND out by routine blood work.
Great thread!
Female, 1a, 57 years old........a nerdy, goody/goody type all my life and I have no idea how I contacted Hep C. Found out after donating blood at a school sponsored blood drive last year.
Would rather fight than wait. Decided I wasn't getting any younger and the sides would only affect me more when older. Just took shot #31 of 48.
Rash, rage and fatigue....oh, the fatigue........but still working full time and still playing with the grandkids every chance I get.
One of the things I relate to is your post sjl, I am only on week 15, yet have the cognitive imparement you describe, not being able to form words I should know. Having a delayed response some days where my mind sees the stop sign but my body doesn't react in a timely fashion,causing me not to drive on those days, Falling X 2 at this point, needing to hold on to things when I do go out. Some symptoms come and go, like the rash has left for now, the riba rage is not as previlent as it was in the beginning, yet the fatigue has turned to exhastion some days, plus many other symptoms as most of you are aware of. My most recent new symptom is worsening visual problems, roller coaster Blood pressure and fast pulse rate not at resting and muscle aches.
You wrote:
Tday's patients are more likely to believe that our health is in our own hands. With that, comes the belief that we must do our own statistical analysis & risk-benefit assessment. I feel this shift in info and decision-making was supposed to be empowering. It often is but the flip-side is we can also end up feeling confused and responsible.`It puts an incredible burden on us.
I agree also with what you wrote on the above topic. I believe I should be as informed as I can be, but I can not go to school for 12 years to have the information a Doctor has about this disease and the ramifacations of the medication. I am continuing my treatment at this time, looking toward clearing as I am still in the early stages of treatment. Although I am hopeful, I am also a realist about this as well.
I do hope for everyone to clear and more research and information for all of us and family members having to deal with this. It is a hard road and I have to say I admire the ones that continue to work and can work.
Well thats my thoughts for now, glad I had some this am. lol Wishing the best for everyone today. valerie