starting treatment

Hi! F 25 and just diagnosed in July with Hep C. I am a 1a viral load 400,000. I am starting treatment next month pegintron/ribaviron. I am scared to death about what the road ahead is going to be like. I work full time and am going to have to continue to work after starting treatment.Just wondering how many of you were still able to work after starting treatment. I dont want any of my co workers to know anything is going on with me. Also any helpful info. on things that help would be appreciated. I feel helpless as to what to do besides the obvious no drugs/alch., eat healthy etc. Also i have been getting headaches maybe 2x p/week is this something that is common?

[tonybuck]

Hi kerri and I wish you all the best with your treatment. I felt like you before I started treatment. I to planned to work thru treatment and I still am. I am on week 16 of 48. I didn't share with any co workers that I was on treatment untill It was obvious that I was not my normal self. The eyes and the drawn out face told there is something wrong. I shared with my immediate boss first and was met with understanding. Then I was confronted by another administrator and asked if I was ok. I shared with them also my situation. My immediate co workers know and in some way I think they are looking out for me.
        Had a very busy week at work last week and was able to cope.I wish I could say It is the same as it was prior to starting treatment but it is not. It kinda like walking on a slippery surface with slippery shoes. Everthing reguires more effort and patience.
          Everybody reacts different to the treatment. It is good that you are here asking questions. My situation might not be what will work for you, but if you hang around here you will find the right answer for you. Good luck with your treatment

[kerri81]

thanks to both of you! I havent had a biopsy my doctor said it wasnt neccessary. I have no insurance and would have to pay out of pocket for it. Dr said according to ALT/AST and other blood work everything seems to b ok as far as how liver is functioning. What are the main side effects that you have had?

[worrywartwife]

Kerri, why you don't consider mobilizing your friends and coworkers at your job as a treatment asset? My husband simply announced to the staff that he is about to start chemo, may not be himself for a while, and thank you no, he did not want to talk about the details. One and all expressed support, and told him to speak up if he needed anything at all. I have shared more of the details at my workplace, telling coworkers my husband has hepatitis c and is going on chemo. I was very surprised at how many coworkers immediately shared details of their own friends, families, and selves who have had Hep C. One lady is now on her second course of chemo and one person's mother is on the transplant list. So many people have this virus, and many people can share information and support with you if you give them a chance. People can be much more caring,noble and sensible than I expected. Best of Luck, JoAnn

[tonybuck]

Kerri,
    Your intial post led me to believe you are scheduled to start treatment. It sounds like from what your doctor said he reccommending a wait and see approach. There are many things to consider before treatment. I not the one to explain it but try to gather all the info you can and seek advice. It is possibble for you to look to the future for possible better treatments. Good luck

[kerri81]

thanks for the help! I work in a Hospital and im just afraid that they may look at the situation differently.Im afraid also that i might be judged badly for having it. Some people are very misinformed!

[kerri81]

My Dr is definately starting me on the treatment next month. I have to visit my local health center for my treatment and the Dr explained the biopsy wasnt neccessary unless I just wanted to have it done but it would have to be paid out of my pocket its not something they will pay for me.

[tonybuck]

Do you know what genotype you are or how long your treatment is?

[kerri81]

Dr stated though according to labs doesnt seem like there is much damage at all and liver is working fine at this point.(which I am 95% sure i contracted HCV in Nov of this past year so dont think i have had it long at all)

[kerri81]

1a 48 wks

[tonybuck]

I have not been around here long enough to here any stories like
yours and I am not the one to give any advice. But I thought I read in earlier post that your body on its own can clear the virus in the early stages of infection. Is your doctor a gastrologists or hemotologost?

[kerri81]

gastro. Youre body can clear on its own but if its going t it does it within the first few wks of being exposed to the virus according to my Dr cause I asked her that very ?. She stated in my case if my body was going to clear it,it already would have done it.

[pigeonca]

I'm telling everyone because I don't know how I contracted this virus.  None of the usual risk factors that I'm aware of, so if I got it anybody can get it.  Having read that somewhere between 10 and 30 percent of all hcv infected people have a "community acquired" virus, my new campaign is to encourage people to demand that their doctors routinely check for hepatitis c.  If they test all donated blood, then it can't be that expensive to test everybody when they go for their routine blood tests during their annual physicals. I read somewhere that only 16 percent of all docs test for hcv on a routine basis.  Shocking.
pigeon

[Lady E]

Hi Kerri.  I am 53 F and started the same tx in July.  Like you, I don't know how I got Hep C. It could have been a tattoo, a piercing, a transfusion in the 60's, or even at the nail salon.  I will never know.  I am fortunate that I only work part time to begin with (I have 2 small businesses of my own to cover my income) I am also fortunate that I work with 3 people and we are pretty close.  I knew I was going to feel like **** some days, and I knew it would show.  I talked to my mgr about it and explained everything so he would understand.  I also decided to share it all with my other 2 coworkers. I wanted them to know it wasn't something they could catch just because we touched the same things etc. They were very understanding. I was able to change my schedule to work 7-2 mondays thru Thurs.  I take my shot on Thurs after work, and that gives me 3 days to recover. Another important factor for me that I want to share is that yes, you do feel like "a puddle" sometimes..but for me the fear and anxiety that I had before I started treatment was worse than the treatment itself.  By the 4th wk I felt like I was bouncing back easier. Hope this helps to settle your worries a little.
E

[desrt]

I did the 24 week course of treatment and didn't miss any work except for scheduled blood draws (200 mile round trip to nearest doctors office) and doctors appts. (450 mile round trip to nearest gastro who was taking HCV patients). Needless to say, I had to save up some sick leave before starting.
I also used the opportunity to educate everyone around me about HCV and IFN. I understand this isn't practical in all work situations, but some of us are fortunate to be able to use our tx to educate others.

[Drarig]

Glad to hear you're starting tx.  As you've probably read, everyone had different sx while on tx.  My personal experience is that I haven't had any sx except low wbc & some hair loss.  The first couple weeks some mouth sores, riba rash, etc.  But everything else ok.  As far as your question about work, I am working full-time & have 2nd job as fitness instructor & I teach about seven classes a week.  I also walk daily & do some weight lifting.  Haven't missed any work yet.  I also have 3 children who keep me very busy.  I am F, 45, Wk 26/48, Geno 1.  I take weekly shots of Neupogen for low wbc.  As I said, this is just me personally, but everyone is different.  I have been very fortunate & hope that you have the same experience.  Good luck!

[Kalio1]

I just wanted to agree with your post up there. It blows my mind so many dotors are so ignorant about Hep C. Why are't they routinely testing? I too am one of that percentage with no known history and I was misdiagnosed, your history should not be the criteria they test on and it is. How stupid is that? I am with you, we have to get the word out if we can and something has to change so people can be aware they are carrying the virus. Since it is so sneaky and can remain that way for many decades it is a ticking time bomb in millions out there. It sure was in me. I just thank heavens I found out before my liver failed. Unfortunately, I am much closer to that point than I care to be, had I been routinely tested at one of the many times I visited the doctor in those intervening years, I never would have ended up cirrhotic. I am working on starting a campaign in my area to stop the silence and fight the stigma surrounding this disease. Not one of us with this should be made to feel we have to keep this "secret" but sadly many do feel that way and for good reason the only reason people feel that way is due to all the prejudice and stigma about Hep C. It is just like back in the day when AIDS was first striking and misinformation and prejudice were rampant about how you contracted it. Teh sad fact is HCV kills far more than AIDS in America today and the stigma is a big reason.

[tonybuck]

Good Morning Kerri,
     I was curious this morning to read what others posted on your thread. The thought came to mind this morning that I should share with you to put out another thread on the forum. The thread could say somthing like (considering treatment, looking for advice ) then share all the pertinent info to your case in your thread. Good Luck and best wishes.

[Mister beagle bailey]

Hi and welcome, you have come to the right place.  If not for the people on this forum I never would have been able to finish treatment.  My advise to you is read, read and learn every thing about Hep C you can before starting tx.  It's not an easy ride but's it's doable.  For me the forum was a world of knowledge and I'm a lot smarter then I was when I started here. For now try and get your self in good shape but don't worry about losing weight, that usally happens while on tx.  Drink plenty of water now to keep hydrated as when you do start tx you will need to drink plenty of water.  Don't worry to much as you'll have much support from all here.

Beagle

[mkeela]

WELCOME!!! One thing you must NEVER,EVER forget, WATER !!!!DRINK 1/2 YOUR WIEGHT IN OUNCES EVERYDAY!!!!!!!!!!!!! START THIS ROUTINE 4-7 DAYS BEFORE TREATMENT (tx).I cannot put enough emphasis on this sx (side effect) saving ritual!! (had very bad sx last week due to slacking off on the water) DON'T FORGET THIS!!!

[RobBetz]

Keri,

Good luck on your journey.  I am 26 and just finished 48 weeks of treatment.  The treatment is rough but well worth it.  Take Care.

www.myspace.com/robertbetz

-Robert

[kerri81]

Thanks for the info. about the water.That is very good to know. That is one of my main concerns(side effects). Also thanks to everyone who wrote everyone has been really helpful and its greatly appreciated. I wish everyone the best and I am sure I will be talking to you all alot more in the months to come.

[worrywartwife]

Kerri-I posted yesterday about the positive responses my husband and I received at work when we each shared with coworkers that he is beginning chemo for HCV. I should have mentioned that we both work in hospitals. I think people were more supportive and understanding due to this-maybe they had more knowledge, thus less fear and judgemental attitudes. Anyway, we both felt an outpouring of support. Giving people a chance to help you may be a kindness to them, as well as you. Best of Luck, JoAnn