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1225178 tn?1318980604

What does all this mean?

I have just found out that I have type 1 hcv and my liver biopsy came back saying I'm at stage 2. I would really like to know what all of this means.
I'm 55, been married to a wonderful man for only 3 1/2 years after 21 years of an abusive marriage, and I still have 2 children at home. A girl who is 11 and a boy who is 13. I'm wondering what the future is for them based on my diagnosis.
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1225178 tn?1318980604
Its good to hear somebody say that it isn't all that bad... the treatment, that is. I have read a LOT about how miserable the couple days after the shot are, and I'm not looking forward to that. I hope I'm more like you. I know what you mean about Moms getting a day off, and I hope my kids will be as accepting as yours. I have kind of spoiled them to the point that they think I should always be there when they need me. This will be a growing experience for all of us. Thank goodness my husband is very undemanding! He's already trying to lighten my load and I haven't even started treatment yet.

Did you have any symptoms before you started treatment? I haven't read much about anybody having them, and I'm wondering why I am having them. I guess we are all different.

Well... guess I'd better get on with living as normal as possible.......Thanks
Helpful - 0
179856 tn?1333547362
Diane for the most part it's not really THAT bad.  I mean it's not like you see chemo on television or anything.  In fact I never had any of those 'flu like symptoms' at all until about week 30. I did have significant other problems but since I stupidly chose to double my meds pretty much it was my fault.  Mostly the one complaint on treatment you can't get away from is the lethagy. It *****. But I did my shots on Friday and then made sure that I had Saturday as my 'day of rest'. I'd lay in bed with my remote control and my computer keyboard and doze in and out when I wanted to and eat whatever treats I felt like. Mostly ice cream is a great food on treatment and the old timers will remember that I ate fudgicles like CRAZY cause you are so dehydrated they made me feel so good :)

I started actually looking forward to those Saturdays in a way. As a mom you can relate that you never are allowed to have day of rest are you - so it's kind of a nice treat on treatment that nobody is going to get mad if you want to lay around :)

My kids were about your kids age just a bit older.  They were extremely understanding on what was going on and that it wouldn't be forever and that I was doing it for them as much as for me. That made them feel good to hear I wanted to stay alive forever for them and so they didn't get upset or anything by it because they knew I'd be alright and it would work! (Never told them the odds just that it would make me better cause that was all they needed to know).

Finding friends on this forum was the best thing I did.  HepC is a very isolating disease for some - having the understanding and support of people that were going through the same thing as me and understood just what I felt was the BEST.  And there were times the jokes would be flying and I'd be laughing so hard I forgot I had the disease.  

Trying to live as normal a life as possible (with the exception of rest day that I wouldn't give up I loved it too much while I had it ;) is the best thing you can do for yourself.
Helpful - 0
1225178 tn?1318980604
Thanks for the info. I am so glad that I found this site. Reading all of the posts helps me feel more positive than I did before.

I hope things are going well for you as well.
Diane
Helpful - 0
Avatar universal
That is an excellent website along with:  http://www.janis7hepc.com/

Good basic knowledge and they do a good job of providing current and updated treatment information.

Another good website I have found most helpful is: http://www.clinicaloptions.com/

You'll need to register it but it's free. Lots and lots of journals, strategies, virtual presentations and treatment updates.

Keep that positive attitude going Diane, it will take you far
Trin



Helpful - 0
1225178 tn?1318980604
Well I guess my age puts me in a spot where I really need to watch things since I'm 55. I don't want to wait to start treatment since I have a 13 and 11 year old still at home. I want to be in as good of health as possible for them as they go through their teen years and then college... and I'd really like to be good and healthy after they leave home. Since I also have a 22 year old, I will have waited a LONG time to be able to have the freedom to just do as I please... and I want to do it with energy and vigor, which is the way I have always done things until late last summer when my energy level started going down the tubes more and more.

I have been doing a lot of internet searching, and I know we have to be careful about what we believe when reading posts on the internet because there are a lot of quacks out there. I found a web site called www.hcvadvocate.org that looks to be professional. Do you know anything about them?
Helpful - 0
Avatar universal
Age and degree of liver damage are factors in achieving SVR with current SOC. The older the patient and greater the liver damage, the harder it is to treat successfully. With stage 2 you're stuck in the middle.  As info, fibrosis progression does accelerate after the age of 50 that doesn't apply across the board.

The new drugs will probably hit the market sometime in 2011.  I've heard different projections as to when in 2011 so based on that my guesstimate is sometime in the middle of 2011.  You do have time to wait and if that is your choice I echo what nygirl said; make sure you are diligent in your watch and wait approach.

Trinity
Helpful - 0
1225178 tn?1318980604
Thanks for you comments. Since I am not symptom free... lots of nausea and fatigue... I'm wanting to get this stuff out of me as soon as possible. I do have great insurance, thank God! It has a high deductible, but since I had to have an ultrasound guided biopsy because of a hemangioma they didn't want to puncture I'm close to reaching it already. As for the job... I work for my husband, so he is giving me all of the flexibility I need... up to a point. I have read that most people do their shots on Friday afternoon so the worst of the reaction is over by Monday. I hope that is true for me. I had a bad reaction to the biopsy... apparently I am sensitive to the meds they gave me to relax me because I threw up for almost a whole day afterwards and had a lot of pain. I hope that isn't a sign of things to come.

I'm really glad I found this site. Its good to know that I can hear from people who have been there instead of just going by what the doctors say to expect. My doctor isn't one to give out info that isn't pulled out of him.

Thanks for the congrats too... I am a very blessed lady for sure.

Hope things are going well for you too.

Diane
Helpful - 0
179856 tn?1333547362
As Bill said at stage 2 you have time to investigate and learn as much as you can. You don't need to rush out and do treatment tomorrow unless you want to (I personally just didn't want to live with the disease regardless but I turned out to be stage 3 and didn't have too much time to dillydally).

Aside from just your liver damage some things to consider are do you currently have insurance that would cover the treatment (it is extremely extremely expensive)?  It sounds like you have a very supportive relationship right now which is great - do you have a job that would be understanding if you were to need some time off?

There are lots of things to factor in - and it is a very personal decision to make.  Just remember, should you choose not to treat right now make sure you continue to be biopsied in the future.  The watch and wait is ok in your case but make sure you do the watchful waiting.......it's important to monitor your liver damage because it might take 20 years to get to stage 2 but that doesn't mean it will take 20 years to get to stage 4.  Not at all.

Good luck and congrats on the wonderful new marriage - sounds like you really earned it! :)
Helpful - 0
87972 tn?1322661239
Hi Diane,

Welcome to the discussion group. First and foremost, don’t panic; the likelihood of dying from Hep C (HCV) is very low. Only around 5% of us will eventually succumb to this illness; and the fact that you’re now only stage 2 might reinforce this.

Has your doctor discussed the possibility of treatment with you yet? There are pors and cons regarding this subject not everyone requires or will benefit from it. With stage 2 liver disease, you should probably begin research, and consider it in case treatment becomes necessary.

A good place to help you with basic knowledge is Janis and Friends;  I’ll link you to their page for ‘newly diagnosed’, Be sure to review the section in the right-hand column called ‘other HCV information’ too; this has data on understanding biopsy results, genotype, transmission, etc.

If you have any specific questions, please feel free to flag someone down in here and ask; we’ll be more than happy to help.

Best of luck, and welcome again—

Bill
Helpful - 0
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