Why, why, why??

[beeblessed]

Just something that's been on my mind and my family wants to know too:  
1.  Why treat if all tests are good and I have no symptoms and am not in pain?  
2.  Why treat at all when so much of the population walks around with Hepatitis and doesn't even know it?  
3.  For those of you who have had it long term, did something happen overnight to make you decide to treat?  A pain or some other symptom.  

I will be treating soon but in the midst of it, if I am having bad days, I want to be able to have a valid reason for doing what I am doing.  It's akin to skydiving in a way.  Someone once asked, why would you jump out of a perfectly good plane on purpose??  To some degree, the same could be asked of Hep C treatment.  I hope your answers help calm some fears of some other newbies here too.  Many thanks everyone.  I appreciate your opinions, feedback and experiences.

[nygirl7]

Because many of us have vast liver damage by the time we are diagnosed or we want to avoid having vast liver damage in the future. Or cause someone just doesn't like the idea of having a communicable disease in the first place.

By the time you get pains and symptoms generally it's very, very late.......

[aj7538]

I have the same thought process. I have been told by many.people these.are serious drugs and no one knows long term effects, or possibly curing hep c but getting something worse from all these chemicals. my dr has no idea how long I have this and told me I could possibly have it the rest of my life without killing me. The thing is it could take a bad turn and then tx is that much harder to endure. I am now on the brinkof backing out . I am that afraid. I don.t take any meds dont see how my body will tolerate this  aj7538

[willbb]

I think we probably all ask ourselves that to some degree prior to tx.
On no.1) tests other than biopsy don"t really tell you much...you can progress all the way to cirrhosis and have normal tests....biopsy however  usually gives a accurate picture of  how much damage  has happened...and I am one that believes if there is "no damage and you are having no symptoms from HCV..the watch and wait method may be a good option (in light of the fact treatments are getting better all the time)

No2...that makes no sense to me...just because someone is walking around with a relatively curable disease and doesn't know it...why would that have anything to do with you treating ..you DO know it and are ahead of the game there.

3)it is a fact that once you get older ..(especially at 50) the progression of fibrosis can speed up ..and sometimes considerably) so treating  before it sneaks up on you (so to speak ) is usually a good idea..in light of the fact now the meds are such improved for success rates.

Best..
Will

[FlGuy]

Your house is your body. Your toilet is your liver.  That giant maple tree planted over your backyard septic system is hepatitis.  The roots of that giant maple tree impeding the outflow of the drain field is increasing fibrosis.  For many years, the septic system works fine and you hardly notice the ever-decreasing flow of the krap leaving your house.  Then, one day....you need to call Bob's Backhoe Service - at weekend rates.

[lynda607]

It's never good when the Honeywagon comes.

[willbb]

then everyone is knee deep in sh%t

[oceanblue701]

I was 57 at diagnosis. I was feeling lousy and had several things like hypertension and hypothyroid diagnosed at once. The hepatitis c was diagnosed then too. I got the other things under control and at 58 began the treatment for hepatitis c. I finished the 48 weeks of Inf/Riba last fall and was found to have a SVR this past April.
I had a vl of 150,000 and a mild fatty liver at the start.
I felt that i just didn't want a communicable disease as nygirl7 mentioned in her reasoning. I also did not want the c to complicate anything else i might get or for anything else to complicate it and move me into liver damage.
I do not regret treating at all. I cannot tell you how much it means to me to be done with the c. I did have lots of side effects and they lasted many months past treatment. But, i was still up and about throughout treatment and really i was ok. I still have some limitations like some stiff joints but i do feel really good now. I have real energy. I am happy and just got rid of one of two blood pressure medicines. For me, it was " just do it " and keep your eye on the prize. I wish you all the luck in the world. I wish everyone here the same. Good Luck.

[beeblessed]

I think of you as FIG.  You totally get where I was coming from, LOL!  Weekend rates (I am crying with laughter).  Yes, I admit, I am a person who needs the visuals.  Thank you!

[chuckles333]

I was diagnosed about twenty years ago and from that time on I would go in at least once per year and have my liver functions checked. About six or seven years ago I had a heart attack and while in the hospital they found my liver enzymes were 20 times the normal range. Not a good sign. The time had come to take treatment especially with the cardiologist wanting to put me on anti-cholesterol medications (statins are notoriously hard on the liver). I'm now clear of the virus, my liver functions are normal, I'm taking statins and my outlook would be good if only I could quit smoking once and for all. I'm sure stories out there abound as to why.

[beeblessed]

Thanks nygirl, aj, and lynda.  Your input helps and is deeply appreciated.  Okay, well Lynda, yours was just funny :)  but I needed the laugh.

Will -- You have given me a lot to think about, especially #1.  On #3, I agree with you, as I am knocking on 50's door next year.  I would rather do this while I have a slightly younger body.

As for #2, I'm not sure I was clear.  I guess I meant to say since Hepatitis C is something others have for their whole lives without knowing, never get treated and then die of something unrelated -- how do I make a rational argument to my family that I have decided to treat, as opposed to continuing on like one of those people who lives a full life and dies of something else?  My sister, in particular, though she supports me, is greatly opposed to my decision to treat. Just trying my best to make her understand the rational, if possible.

Ocean -- I truly appreciate you sharing your experience.  Thank you.  Even though I am nervous and scared.  I am opting to do treatment because I do not want to run the risk of severe liver damage over time, and ultimately need a transplant.  That scares me more.

Be well everyone and please keep the comments coming.  Beeblessed!

[nygirl7]

I've seen several friends die of hepc - once you have, you have your answer.

[mikesimon]

" Hepatitis C is associated with many extrahepatic manifestations, including nonspecific antibody production, essential mixed cryoglobulinemia, glomerular nephritis, porphyria cutanea tarda (PCT), leukoclastic vasculitis, non-Hodgkin’s lymphoma, autoimmune thyroiditis, diabetes, and Sjögren’s syndrome."

Clinical Care Options

http://webcasting.clinicaloptions.com/p41111200?session=1791621854

Mike

[ninjamonkey]

As soon as I found out I had it I new I wanted treatment now that its getting closer to actually treating I'm get more scared and fears that I didn't think of before are coming up. I believe that with something this evasive there is no way to not have fears and doubts the best thing to do is read all you can and surround yourself with support and this forum is great for that! Never fear of stupid or scary questions ask anything. And Bee if your having a bad treatment day and asking why am I doing this we will give u any support you need and remind you your doing it because desiese free is better then not and once its gone those fears of end stage liver failure will be less on you. And I believe strongly that living the rest of your life knowing you have hep c and doing nothing wouldn't be easy because your mind would torture you or mind would especially if end the end you and your family had to deal with mire because ding from this is not a pretty sight and your family would go thru more then but that's just me. My main point is we are always here for you

[beeblessed]

Thank you chuckles, atta, mike (although I keep thinking your screen name is mikey's mom; LOL), ninja and anyone else who is typing the same time I am (as you were chuckles). Nygirl, you hit home.  I am very sorry for your losses, and I agree with you.

Aj -- Are you reading these?  I hope it helps you too, whatever you decide.

Keep the comments coming.  I'm still learning.

[sunshine415]

hi, I'm in the same boat, as many here on this forum.. going to begin (UGH MAMA MIA) !!Sure am nervoous.. but, I must do what I have too do.. to better myself... it'll be the 48 wks naturally... another (ugh).. but, I'm just praying that the side effects aren't tooo harsh. and would love to keep in touch with a few people on this site, to help me follow thru. thanks, and stay brave, ty

[nygirl7]

Good luck Ty I hope your side effects are very very easy and you make out just fine.

[streamline569]

I don't know your age or you situation but here are two very good reason.
#1 you don't want to pass this on to your child if you are indeed of child bearing age.

#2 You now know you have a preexisting condition. We don't know where health care is going and as you know not everyone has assess. So you have to think were am I going to be in the future.

I also think some the other factor that someone mentioned about other health issues coming up and causing problems for your liver as you age. We just do not know what the future holds for us. It's very easy when you are feeling well to say "I don't need treatment" I did that for two years after I found out, but once I started getting sick I knew it was alway going to be like this and worse to come. I was so scared. I do not wish that fear on anyone to feel a part of your body dying and knowing you may have waited to long and there is no turning back.

Good luck on you decision

[crossroadsec]

Since my symptoms hit overnight n landed me in the hospital g4/s4, there was no choice but to beg for the chance to treat. If only I had had the knowledge even 10 years ago, I feel it would have been much easier to endure tx.
I look at those grandchildren, my daughter, a roster of new literature students on my desk, and cry every day. I'm soo grateful to have a chance to live once I clear.
Then there's that book I've been working on forever, my passport isn't half full yet, I still can't write in French, I haven't seen Muse in concert, my list goes on.
Sry I'm such a bawl baby today. Make ur list sweetie. Post it somewhere you can look at it daily. Or on days like today... hourly. lol. Did I mention a hot boyfriend who is a gen mngr in the health food industry who is very holistic, and encouraged me?  He did the research n gave it thumbs up. That sent me running to start tx. ;) Karen

[screaming48]

I have the same questions and thoughts as you do, I have thought this through and I am scared to death. I also mentioned to aj that if she had breast cancer, lymphoma, or any other disease she would prob treat it. I went through this two years ago, I have a marker in my left breast so the Drs can keep an eye on it. Now I have found out I have hep c, two ticking timebombs that I am now aware of... I don't want either of them to kill me, yes I could die of something else and die with hep c not of it,. I have a better chance at curing the hep c now than if I were to wait as I am fast approaching (sept) my 50th and if it is true that the disease can progress faster after that age, I believe although I am so very scared I would be foolish not to take care of it now while I am still healthy. So I guess now I have also convinced myself this needs to be done. There are alot of wonderful people on this forum who have been there, done that, or are in the process of doing it that will support anyone that needs it. I hope for me as well..Tempus Fugit (time flies) lets get it done...anne :)

[270217-1b]

Thank you for this thread!  I have posted questions after my biopsy results were in and the doc said I don't need to treat right now - I am soooo confused, and like you, for some reason, feel the need to justify treating this disease! I don't have any symptoms, but I am over 50 and would really like to not have this anymore, just to be done with it.  

No clue what I will do yet, still processing, but it's really nice to know that I am not the only one out there who doesn't "have" to treat right this minute, but wants to.  I am very afraid of volunteering to have the flu [at best] for the next 6 months to a year, and putting my family thru the sides if I get them - but to not have to tell every single health care provider you come into contact with that you have this ..... pretty priceless I am thinking.

Good luck with your decision!

[lapis]

Question #2 is the tricky one, I think.  People don't understand why you might choose to take these drugs that may make you feel sick when you feel okay right now.  I did tx in my mid-50's and had some serious sides.  I did still work and travel during that 24 weeks of tx, even though it was hard.  It's been more than two years since I finished tx, and I am still considering what Hep C did to my life, since I waited more than a decade after diagnosis before I did tx.  I thought about my disease every day.  I worried that I would somehow infect other people.  People who don't have Hep C just don't understand how it feels to live under such a cloud.  I've seen people with advanced liver disease, as nygirl mentions, and the thought of facing that future really frightened me.  And then there is the stigma that still accompanies this dx, although many people are trying to change that, finally.  

"like one of those people who lives a full life and dies of something else"
My life may have looked "full" from the outside but my anxiety and fears were painful and pervasive.  I didn't want to wait for the tide to turn unexpectedly.  I had biopsies 7 years apart and my liver was getting worse, although I felt okay.

Having Hep C changed my life, and not in a good way.  It is a wonderful feeling not to have it anymore.  Maybe you could share some of the replies you've gotten with your family members.  Have them research advanced liver disease and maybe then they will understand why you don't want to take that chance, if that's what you decide.  

Good luck to you!  Lapis

[evangelin]

My husband had very few recognizable symptoms until he had cirrhosis.  He was the one person in the family least likely to get a cold or flu or anything.  He had a cast iron stomach and not much of anything bothered him.  Then, out of the blue, I noticed his muscles were gradually disappearing in his shoulders, he started to sleep a lot more but never seemed rested.  He wasn't in the habit of going to Dr.'s and waited too long to go get checked out.  To our shock and amazement, he had HCV and cirrhosis.  He went down hill pretty much all at once.  Since he was a nonresponder to interferon and Riba, there probably wouldn't have been that much we could have done if we'd known sooner, but things are more promising for you because the weapons have improved so much.  Things are really looking good for the future.  I wish we could wait for a noninterferon offering but your choices diminish if you wait until you are really sick.
Best wishes in your decision making,
Ev

[Anne1717]

I have absolutely no liver damage and had a negligible viral load.  I was diagnosed "acute' and probably had it no longer than 3 months at that point.

I chose to be treated for several reasons, the first being, I felt it irresponsible to be putting others at risk of contracting HCV from me.  Despite our best efforts, there is always the chance of infecting another.

Secondly, I don't want to live with  a disease - THAT disease and always have it on my mind.

It's a personal choice  and despite how hard the treatments can be, I would make the same decision.