hello

[ellie4]

Hi,
I.ve been reading post for the past few days. Very informative. Iwas dx. 10 yrs ago. but decided to live in denial.
It's different now, pain in feet, tired arthritis in my knees. I had a liver bx, stage 2,geno 1b. My gastro, thinks I should be treated, this means leaving work, paying cobra. Afraid to go that route for not, hoping to hang in till better drugs. Any feedback, alternate views , would be helpful.read one post about losing weight before tx. I have 30lbs I could loss need to really look for the energy after work. Really don't feel like it.I'm kind of a mess

[ellie4]

Hi odin999,
Good to see your post.My heart goes out to you.Did I understand that you have NO liver damage? I'm thinking that if I was considering such drastic measures to receive tx. that I will probably just use antifibrotics, antioxidants, antiviral supplements((TCM).and nutrition. looking at qi gong as well. Looking at what is going on in China, Germany.Who knows, best to stay open now. If I was thinking of dropping that kind of money, time, and nonproductivety the odds have to be better. I will wait until something less barbaric shows up.Thats my plan I don't know whats in store, hell I could get hit by a bus next week for all I know. I came out of denial long enough to know tx. for me at this time is not right, something tells me it would be an exercise in futility, with a high price.I would rather have the control at this time. I know this view is contra to most of this blog I don't mean to offend anyone, but ironically it is the experiences I have read here that has helped with my decision. I will continue to read posts, I have received much information here that I was not aware of plus some really heartfelt wonderful people.

[Odin999]

I am still waiting. Arrgh! It is driving me nuts. My GI is really hard to get a hold of at the moment. She is on reduced hours during school holidays and the sensitive qualitative test results hadn't yet arrived on the day that I did manage to get a hold of her office staff. Specialist is recommending to quit if not UND at 12-weeks because the treatment would have to be too long and the likelihood of relapse in my case would be too high to justify the risks. If UND then I still have some difficult decisions to make.

Two of my clients are niggling voices are increasing in volume due to slow progress on three different projects. All this indecision about treatment is not helping. I actually managed to get some work done earlier this week. It made me feel a little more positive about the treatment and wonder if I was over the worst of the fog. Other sides had diminished a bit lately too, but today terribly foggy again. Have to try and pull myself together to deal with work right now.

[meki]

Yes - that is correct Odin - sorry - I didn't see the question until just now.

[ellie4]

Hi,

Hector  I don't know for sure why he said to me, althought we know the amount of tissue is tiny, and maybe these tissue samples are not representative of the liver as a whole.

Odin99  Where are you?   Did you get your results back. I think I am going to continue to look at options and stay connected here.
Meki thanks for the encouragement.    

[rita863]

MEki

I was wondering,  i have been treating since jan 24, (week 26) i have used all of sick, leave and personal time.  My immediate supervisor said something about me loosing my health insurance, or having to pay towards because i am not working enough hours.

after reading the information on FMLA, i am thinking this would help me.
1.  keep my insurance the same
2.  protect my position when i have call out.

is that correct?

thanks

rita

[meki]

*blush*

*grin*

[Odin999]

"If I could do it - YOU probably can do it or more!"
The proverbial paradoxical challenge. Um thanks, I think? I accept gracefully, although I wouldn't begin to expect that I could exceed your outstanding guts and determination.

Meki I have a great deal of admiration for you from what I have read in these forums to date. Your posts are incisive, at times powerfully expressive. I would say a lot of people benefit from what you contribute.

[meki]

Who said you had to quit work?

I worked all the way through --- Albeit - I took FMLA - so that I could take days off - and I used every freaking available vacation time and sick leave available.

But I went to work 4 days out of 5.

If I could do it - YOU probably can do it or more!

Keep reading through the forums - and learn all about this interesting disease.

Meki

[Odin999]

--- "in a nutshell, dido. I'm it. house and all,  thought about selling  just to regroup.But really don't have to go into that mess with the market as it is."

I hope you can keep your house. Don't know your situation but if your income drops during treatment it may affect your ability to refinance or get another mortgage for a few years. At our age the situation isn't pretty, who is going to give a mortgage to a 55-year old single woman with limited assets etc... I am 51 but I am looking ahead to post-treatment plus several years trying to re-establish an income history.

I truly I wish that I hadn't been scared into thinking that it was critical to start right away so that I could spend more time becoming comfortable that treatment really was the right thing for me. A combination of factors, like trusting that my normally wonderful GP wouldn't send me to a bad specialist and being told that I had a 30-40% cancer risk led me to rush into this thing. I believed the cancer risk at first because my mother and grandmother died of liver cancer. I thought I might have some kind of predisposition to it. As it turns out, other medical opinions completely contradict that 30-40% figure.


--- "Are you unable to work? fret over work, or physical tx. misery, or both."
I have been barely able to work for a variety of reasons. Some of them were practical. The GI wanted me to attend his clinic for injections on 5 consecutive Wednesday afternoons - right in the middle of the week. Side-effects wiped me out for three days at a time in the beginning. I couldn't get out of bed, or off the bathroom floor. I had only 2.5 days left for work, to organise refinance for my house to pay for all this etc. Then from week 3 brain fog kicked in. It's a long story. I wrote about it a bit on the Dr. D forum which I expect you will have seen so I won't repeat it all. I was given bad initial advice so I became very stressed discovering after starting treatment that my odds were so low, and that I probably could have waited for more effective drugs. I realised that I was missing out on the best treatment methods. Now that I am in better hands I have calmed down, but it is too late to maximise the first 12 weeks and I am left with a lot of questions that would have been better answered before treatment began.

I am not vehemently anti-treatment, despite my difficulties and bad experiences with my first GI. For some people it is the only hope and the price is worth it. I do think that we need to be given the true price and the real risks before starting though. That frequently does not happen. I think the lack of scientific reports and statistical information on post-treatment side effects is reprehensible. It has caused me significant concern and is weighing heavily on my decision making right now.

Despite everything though...and in a strange kind of way I am feeling like something has shifted inside me, that as the virus is taking a beating I am being freed of a burden that has been with me most of my adult life. It would be a fine thing to be rid of it indeed.

I am curious as to whether other people feel a subtle internal shift as they become UND. (I don't even know my 12 week VL yet! It just somehow _feels_ like the virus might be UND or at least very low.)

As for antidepressents, I thought about it and chose not to. Although this treatment really is mentally rough, I felt confident that I have the strength to get through it psychologically. It is part of my character that adversity drives me to improve. The technical term is "resilient coping" I believe. I did not want to suppress that, and I did not want to introduce yet another serious set of drugs into the equation. There are a lot of issues to consider with ADs. They don't suit everybody. Getting off them post-treatment can be an issue. Many people recommend taking them and I respect their opinion. Like anything else, it should be a well researched decision that you are personally comfortable with. I am happy that I chose not to do so. I arranged fortnightly visits with a psychologist to help me get through it.

[HectorSF]

In response to your questions and a few comments...

"My gastro said stage 2 could really be stage1 or stage 3!! depending on clear view of most liver tissue which was not done, this would be done with laproscope he said."

How experienced is your Gastro in treating patients with HCV? A biopsy is "The gold standard” for determining level of scarring and inflammation of the liver and other abnormalities of the liver.

Biopsy with Laproscope? I wonder why?
"Laparoscopic Liver Biopsy – Diagnostic laparoscopy is especially useful in the diagnosis of diseases of the cavities enclosing the stomach and pelvis, the evaluation of ascites (the accumulation of fluid in the abdominal cavity) of unknown origin, and the staging of abdominal cancer. It can be performed safely under local anesthesia with conscious sedation. However, the use of laparoscopic liver biopsy by gastroenterologists has declined in favor of less invasive radiologic procedures, and very few gastroenterology training programs now provide instruction in the procedure, which is usually performed by surgeons because of their growing experience with laparoscopic surgery."

I am Stage 4, cirrhosis and I had a Percutaneous Liver Biopsy, with a needle directly through the skin into the liver. The anesthesia needles hurt more than the needle into my liver. Really a pretty painless and a vital diagnostic tool. They took two samples by the way.

There is no extra payment when you use FMLA. Whatever you are paying now for insurance through work will be what you pay while taking FMLA. Last time I had CORBA I believe it was many hundreds of dollars per month.
I say that tratment is quite costly because...with my Blue Cross of California medical insurance coverage this year I paid $100 for 4 Peginterferon preloaded Syringes and $45 for Copegus (Ribavirin) at Walgreens in San Francisco, CA.
Peginterferon without insurance = $2,356
Copegus without insurance = $1,842
This is per month for my meds and does not include blood tests, scans, doctor visits or other common costs during treatment!

It is common for patients with a history of depression to consult with a psychiatrist before starting treatment and possibly starting anti-depressant medication as a preventative measure in case depression should develop as a result of treatment. So talk to your Gastro about this.

Best of luck to you !
Cheers!
Hector
  

[ellie4]

Thanks for the welcome! I have felt so invisible with this thing. Running, hiding from self / others, Really great to read comments, so helpful. Courage feels present, if only alittle. My viral load is around 750,000.
Odian--- in a nutshell, dido. I'm it. house and all,  thought about selling  just to regroup.But really don't have to go into that mess with the market as it is.Are you unable to work? fret over work, or physical tx. misery, or both.  
My gastro said stage 2 could really be stage1 or stage 3!! depending on clear view of most liver tissue which was not done, this would be done with laproscope he said. So now how do I feel. Iguess the bottomline is to take tx. or not. The FMLA info. is great. thank you. As far as tx.goes what is "quite costly"?   With the FMLA will my ins. premium be the same as cobra payment?
What about depression, is this a problem. My doc talked about antidepressants with me. Suns up going to do yardwork. Have a great day, and thanks again
  

[HectorSF]

Welcome! Excellent question.

Don't quit your job! Don't pay for COBRA! You been paying your taxes and your health insurance premiums for years I would guess? Now you need help and deserve to use those services you and all of us pay for.

Remember everyone is different; you might not even have bad side effects from treatment. No one can predict how you will respond. The only way you'll know is when you treat.

First, keep your job. See how is goes as you start treatment. If you should feel to ill to work fulltime...You can use the "Family and Medical Leave Act" to take the time you need. You won't be paid when you are off, but they can't fire you either AND you have company insurance to pay. (Treatment can be quite costly).

So talk to your HR department before stating treatment. Remember you don't have to tell them anything! Just get the form from them. Your doctor will write a general/vague note for you. The duration of treatment, any restrictions about thongs you can't do on the job, time you'll need for tests, etc. Medical information is legally confidential. No one but you and the people you want to know have a right to it.

Family and Medical Leave Act
http://www.dol.gov/esa/whd/fmla/
Covered employers must grant an eligible employee up to a total of 12 work weeks of unpaid leave during any 12-month period for one or more of the following reasons:
for the birth and care of the newborn child of the employee;
for placement with the employee of a son or daughter for adoption or foster care;
to care for an immediate family member (spouse, child, or parent) with a serious health condition; or
****to take medical leave when the employee is unable to work because of a serious health condition. (That is us!)

Finally, worse case, go on disability which lasts I believe a year. They can't fire you AND you keep your medical insurance.

Think about it. What do cancer patients do? Person who need dialysis or other reoccurring treatments? You've been paying into the system for years. Now that you have a major illness it's time to actually use the services you've been paying for all your life.

Best of luck!!! Glad your thinking about treating.
Hector

[Trinity4]

Where are my manners!!!  Welcome to our forum and you will find many knowledgeable people willing to lend thier expertise and guidance.

Trinity

[Trinity4]

You don't have to stop working while on treatment.  Many of us work full time jobs.  It isn't easy but it can and is done.  I am geno 1  - stage 3 and work everyday.  I need the money and the health insurance.  Took my 14th shot today.  I don't feel so good sometimes but I just suck it up and keep going in hopes I will rid myself of this nasty beast.  When you're at stage 2, it's difficult to advise what route someone should take.  Some treat in hopes the damage will not advance and in many cases with successful tx the damage is reversed.  Some think it's prudent to wait for better drugs which will most likely be available is a couple of years.  In my case I had no other choice and I'm not looking for better liver health as much as trying to prevent cirrhosis.  You are a geno 1 so you have a minimum of 48 wks.  You don't know how tx will effect you until you try so you may be one of the lucky ones and breeze through it.  Denial isn't a good thing for those of us with hepc.  We have to be very proactive in our recovery.  Good luck with whatever you choose.
Trinity

[Odin999]

It's such a hard decision isn't it? I am Geno 1. I am 13-weeks into treatment and still fretting about whether I did the right thing and whether to continue. It could send me completely broke and I am at an age when restarting a career isn't that easy. That's the bad scenario. The good scenario is that I get through treatment, get rid of HCV, don't have damage from the treatment and salvage enough of my business to keep my house.

I want to get rid of the virus - it has been hurting me and holding me back on so many levels for the last 30-years. On the other hand, the price of treatment can be terribly high when you weigh up all the factors involved.

Anything you can do to make the treatment more effective and to make it easier to get through is well worthwhile if you do decide to go ahead. I would have liked to wait for a shorter duration treatment if I had known that I could get one. I think if you haven't treated before you have a few more options. You may be able to get into a trial for one of the newer drugs. Trials are not to be taken lightly either - what if you get one of the less effective combinations?

What's your viral load?