Who's Doing 'Watchful Waiting?'

[Tallblonde]

I'm just curious about how many among us has decided to postpone treatment and take a "watchful waiting" approch.  I realize that not everyone has the luxury of pursuing this option.  But even in those cases, I'd be interested in knowing if the people in that group would have postponed treatment if they could have.  Moreover, I'm interested in hearing the reasons and rationales behind the decisions.

In my case, as many of you already know, I'm working on one last attempt at pregnancy before purusing treatment.  But even then, if my VL and biopsy results continue to be good, and if I'm not experiencing major symptoms (especially fatigue -- which I have NONE  of now), I wonder if I'll continue to postpone or finally jump into treatment.

Would love to hear your thoughts on this.

Susan

[Tallblonde]

Thank you so much, Don.  I really appreciate it!

Susan

[Tallblonde]

Thanks to each of you for writing.  

Oonihs:  That's very sweet...thank you.

Tom:  I think you're right about having to be "ready to kick its ass."  I'm not there yet because it hasn't caused me too much trouble or inconvenience (unless, of course, my five miscarriages are due to HCV).  But when (or if) it starts really messing with me in terms of fatigue and other symptoms, I'll be ready for a fight, that's for sure!

Audrey:  Good luck to you.  I hope you're able to sail through the treatment as smoothly as possible.  You're doing the right thing.

Susan

[DonL]

I wish you the best of luck on February 2nd. You have the luxury of being able to wait and something important you want to do first. In your shoes I would make the same choice. I'll keep my fingers crossed for you.

[audreywald]

I waited for about 7 years, I was really afraid of the sides. I could not see past the tx; I could not envision getting well.
But the last few years I have become very symptomatic; fatigue, joint pain, lots of stomach pain - I got sick of being sick. So tomorrow I do shot #4.

It is been a minimal sides week for me, I even had moments of feeling just fine, and I am starting to appreciate those moments. If I can buy myself some years of health, energy, stamina ... this will be worth it.

[HepperLepper]

I was diagnosed 8 yrs ago with Hep-c. I am 47 years old. I found it because of a real sharp doctor. I was being treated for PCT (Porphyria Cutanea Tarda) at the time and he heard that 85% of the folks with PCT get Hep-c. PCT causes iron in your blood to build up. I had to take phlebotomies to reduce those levels. My liver apparently was holding up well after the many years of abuse I have given it and my biopsy showed only slight damage and no cirrosis. It was good to know my conditions before they were problematic. I heard the "horror stories" of the treatment and said, "I can wait till they get this thing figured out better". I didn't like messing with my immune system since it seemed to be working fine...no colds or sickness in years! Besides, "if 85% of people with PCT get it...I would no doubt get it again". That was my logic.
Well, due to pressure from family and friends, I opted to take Peg-intron and Riba tx last june. One of the first tests I asked for was geno-type. Of course, I was group 1. I started to clear but not to undetectable, then after 6 months, the numbers started going the wrong way. Sx was tolerable because I was able to mark it on a calendar and I knew it had an end, one way or the other. Currently, my vl is 250,000 and alt and asp are in high end of normal ranges. My current doctor (a Hematologist) ordered the wrong test for baseline data so I don't really know where I started. I only know where I am and how I feel. I stopped tx on Xmas eve (hohoho) and I am now feeling much better.
I am optimistic that tx will be better in the near future. I do not regret taking the tx at all. I learned a lot about the disease and about myself. It wasn't so terrible to do. You just have to treat it like a short term thing. I did take Paxil to try to keep my mood right since I have been a volitile guy forever but I don't think it helped much. Once again, it's attitude that gets you through it. If you aren't ready to kick ass, then you will be miserable during tx. I hope you can muster the courage to give it a shot. Get a specialist though who really can monitor this thing. I think my guy screwed up a few times just cause he doesn't see this much and probably just "cookbooked" it. I am going to get a specialist next to monitor and let me know when I have a better chance at clearing it.
Tom

[Tallblonde]

Sounds like you took a very sensible approach.  Thanks for writing...best wishes for a successful treatment outcome.

Susan

[jonihs]

Hopefully we'll all have an extra reason to rejoice this Valentine. My prayers and positive thinking are w/ you daily!     Joni

[cindyazure]

When I found out I had hep c, the first thing I did was to get the kids tested.  They were ok  whew!  After the bx I put some time aside to get my life prepared for whatever might come down the pike with tx & sx.  Finances, support also my son had his permit & I figured I might not be able to teach a teenager to drive while going thru this.  Once things were settled (& my son got his license) I started tx.  Do it when it's right for you and the best of luck to u.

[ringading]

yes, i was sure i remembered you posting this to me before, i am sorry....it really is quite rare for this to happen, but in no way did i mean to minimise the pain you and your family must experience.
kimmy

[jg2001]

After your passed experiences, I'm keeping my fingers, toes and eyes crossed that it works and is successful!  All my hopes and prayers,

Jamie

[simpleman]

I agree completely with your decision, and Scott's opinion, to wait. Also even if you had the time to do tx then wait to get pregnant, I don't think I would completely accept that the baby wouldn't be harmed by the meds even after waiting. This from a guy who completed 48 weeks of tx. If I had your numbers I would wait even without the pregnancy issue. I think you have made up your mind so don't second guess yourself. You're doing what YOU think is right for the RIGHT reasons. Good luck.

[Tallblonde]

I wish I had time this morning to comment on each of the posts I just read.  My thanks to ALL of you for sharing your thoughts, perspectives, and personal experiences with me.  By the way, I'm definitely going through with the embryo transfer on Feb. 2. I'll know by Valentine's Day if it "worked."  I'll certainly keep you all posted.

Thanks again,
Susan

[britgirl]

I waited for about eighteen months after the biopsy results before I told the hospital I wanted to do the treatment. I felt everyone was pressurising me to do it and I didn't feel in the right state of mind. What really convinced me was finding out my genotype (hospital policy was not to test for genotype UNLESS the patient wanted tx - Crazy, huh?). I was 3a. I f I had been genotype 1 I don't know what I would have done. I think it is good to have a period of reflection rather than get bounced into tx by the medical profession. That way, when you CHOOSE to do it you will be mentally stronger.

[Tallblonde]

At my "advanced maternal age" of 44, it's just not reasonable to wait 18 months (one year of treatment and six months of "de-tox") to attempt a pregnancy.  Both my GI's strongly advised against that and encouraged me to "go for it" now.

Susan

[Tallblonde]

Welcome to the board.  When did you learn that you have Hep C?  It sounds like you're still in that "shocked" stage.  Understandably so. I don't have much wisdom to offer regarding your diagnosis (this is new territory for me, too), but I do want you to know that you'll find plenty of support and friendship here.  You're not alone.

Take care,
Susan

[honey1616]

are you presently working outside the home?  If you have a pretty easy schedule then there is no reason you couldn't still enjoy activities with your daughter and all of those would be great for you to do.  There might be a couple days out of the week that you may not feel great but you will plan around that schedule and still enjoy your family.  Hope this helps and best of luck!

[GwithHepC]

Ringading

While it is highly unlikely to pass the virus to your child (almost everything I have read says the likelyhood is 5%), I think "ALMOST...ALMOST impossible" might be a bit on the optimistic side.  Some things that increase the risk of transmission is HIV + status, high viral load in mother, and forceps delivery.  My daughter is infected; I had no idea I had hep c when I was pregnant, but almost certainly had it when I was.  I am HIV -, have no idea what my viral load was when pregnant(it is around 400,000 now).  However, she was 2-weeks post term and delivered by forceps after a very long (48 hours)delivery, so at least one of the factors that increase risk does apply in our case.  I am not saying anyone should worry about it since 5% is pretty low, but I'd definately wouldn't say 5% is almost impossible.

G

[Revenire]

There was a time when I said TREAT to anyone and everyone that came here asking but after reading GI.PA's reasoning, among others, I've changed my mind. I think given your biopsy score you have plenty of time. If mine was what yours was I might just wait myself. I'm jealous ... not really :)

Scott

[willing]

Hi Susan, from what I've read and experienced my recommended algorithm would be : if geno is not 1 goto consider_tx, else if bx stage >=2 or (bx stage = 1 and age >=50)  goto consider_tx else monitor (wait sounds too much like procrastinate: the need to tx may never arise).

Consider_tx means if you have no  significant contraindication (eg mental, cardio, autoimmune, etc.) treat else sweat the details. I think of tx for 1s as a risky gamble one should avoid when they reasonably can.

[jonihs]

understand the reason you don't want to get pregnant afterward. I know the way I feel now,I wouldn't feel up to pregnancy, labor , or taking care of a new born. I also know of your past problem, but please tell me why you can't tx. now, wait your 6 mo., then try again. Then there wouldn't be any pressure(you know what i mean) And if it' supposed to happen, it will. God Bless and Good luck.                Joni

[Tallblonde]

You wrote: "I think of tx for 1s as a risky gamble one should avoid when they reasonably can."

I agree with that statement totally.  I respect your opinion and I'm glad that it corresponds with my own instincts.

Thanks much.

Susan

[dee40]

to honey thanks for your reply. my work schedule changes from week to week, although my manager knows and she seems pretty support of, her aunt is going through treatment, so she kinda knows a little. Im a waitress and i love my job and make great money so im hoping i can still work, idont think that i can get fired because of discrimination. so i hope everything will work out.dee.

[ringading]

i know..i know...i was scared to DEATH at the thought that i would have given this to my child and more than anything was terrified about that..and had to for my peace of mind have her tested....i could handle anything, that was thrown at me, as long as my child WAS OKAY....so i understand that fear...but i have since learned that it is ALMOST...ALMOST impossible to pass this to our kids..so stay strong and get them tested for your peace of mind at least and please come back and share the good news, that they are 'virus' free..here okay....hang in kiddo!

[Tallblonde]

You're about the only one who's jealous of me these days.  Nobody I know personally is eager to be in my shoes, that's for sure!  Hey, thanks for the perspective on waiting.  I appreciate it.

Susan