Living with

[Saphire82]

When u don't have the money to go get treatment where do u turn , and how do u cope with the side effects ? Sleepiness , laziness , no ambition, no sleep ... And so on :)

[Advocate1955]

It's important not to get overwhelmed to the point that you are not taking action on being knowledgeable and making informed decisions about your health.  So, take a deep breath, buy an inexpensive expanding folder, organize your lab results, test results, information, etc., so that you can find it easily, and make a plan for taking care of your health.  I would suggest reading some basic information about the liver and Hep C.  Bookmark, save, or print what you read so you can refer back to it.  Then read about the new triple therapies with Incivek and Victrelis.  Then make an appointment with a Gastroenterologist or a Hepatologist and go with a list of questions to ask about your particular situation.  Once you have more information, then you will be able to find resources to help you with the cost of care and medications for treatment.  This forum is a good place to ask questions, get information, or get support.  Your husband may be scared, like you are, but may be expressing it in a different way.  You may also be experiencing some depression or anxiety, and you may want to talk to your doctor about that.  It is hard to tackle a problem and work toward solutions with fear, anxiety, and/or depression.
Advocate1955

[virt111]

I went through some of the same feelings back in 2008 when I was diagnosed. It's easy to become overwhelmed with fear (and shame if you've gotten it from IV drug use, as is my only risk factor).  One thing I learned to tell myself was, IV drug use does not make you dirty, a bad person, or anything else.  Just because alcohol is legal doesn't make the person who abuses it any less of an addict than an IV drug user.

Next, treating HCV is a personal choice and is dependent on numerous factors.  For me, I had minimal damage after 30 years.  Stage 0, grade 1.  I've decided to hold out with treatment.  There's a lot of exciting news coming from the HCV drug pipeline, in terms of treatment options that offer a less toxic route to SVR.  So, don't put the cart before the horse.  Get to a good doctor, preferably a hepatologist, and get evaluated.  

Try not to worry and certainly don't spend hours and hours googling hep c.  You'll make yourself nuts!

Best to you...

[pooh55811]

I am sorry to hear that you have Hepatitis C.

Fear is a natural response to having a disease such as Hep C. It also does not help that you seem to have no support at home.

You don't have much on your profile (Hep C Genotype, age, how long you have had Hep C, if you have every had a biopsy, where you live, etc) (not your address, just general idea so people know where to point you for help).

You said you do not have money to get treatment. Do you have any insurance, either your own, or through your husband's job? If not, depending on where you live and your income, you may qualify for some assistance or government sponsored medical insurance. The more details you provide, the easier it is to provide some helpful responses.

It is helpful that the med companies help with the cost of the drugs if one does not have insurance, but there are many other costs (biopsy, frequent lab tests, doctor visits, etc.). That is why some people have suggested looking into trials since trials pay for just about everything.

Without knowing anything else, I would encourage you to seek a support group for Hep C. Many areas have them. You may be able to connect to some helpful and understanding people and you may also get leads on how to get financial help for the treatment.

Again, if you provide us with more details perhaps people can give you more specific help.

I wish you the very best.

[1oftheclub222]

One thing about this disease is that it is typically a slow moving thing...it takes years usually to get significant damage in the liver...I have had this for many years as far as I can figure out and have only a little bit damage...I have heard the same from many on here...but there are some that it happens to more quickly, so one can't be sure...

the first thing to do once you can find some assistance is to find out what shape your liver is in with a liver biopsy...then you can better understand the time frame you are working with...if there is little damage to your liver you have a little more breathing room to find help or a trail or what ever route you decide to take....if there is more damage to your liver, then you might want to move  faster on that decision...in the mean time try to take care of your self, no drinking, no drugs, try not to eat too much processed high fatty foods, and do your research on this disease so you can understand what it does better...

I understand what you mean about the spouse hiding their head in the sand, my ex did that...I told him about having Hep C and that he should get tested...he told me, I don't need to get tested, I don't have that sh**...you can only do what you can do, try to take care of yourself for now....

[hrsepwrguy]

Here are the pharma co's assitance numbers you can get the drugs for free if you qualify.

855-837-8394 incivek patient assistance info(co pay help or finiacial assistance)

877-734-2797 for pegasys and copegus

888-437-2608 for pegintron and victrelis

[crigger]

I know some times the drug company give free medication to people of a certain income.

[orphanedhawk]

Belle's suggestion of doing a trial is excellent.

Another option is if you are low income you might qualify for charity care at a hospital. Call your local universities or hospitals with a liver depatment and ask if they have any financial assistance programs.

The first thing you need to know is what condition your liver is in.
Not everyone needs to do treatment or needs to do it quickly.

Good luck.
OH

[belle19]

hi there. i went the clinical trial route and i couldn't be more pleased.  i have received the most closely monitored care.  it's all free and in the end i get paid for my participation.  i got a free biopsy.  my doctor is one of the top liver specialists in san diego.  my study nurse is awesome.  don't be shamed.  no one here cares how you got it.  just to take care of yourself and get tx.  i'm in my 33rd week and was UND by week 8.  good luck to you.  this is a wonderful forum with lots of informative people.  take care.  belle

[Saphire82]

Ty very much .... I'm overcome with fear .. I've known about it since my second child ... I got it from sharing needles wit my x (MISTAKE? YEA!) , who hasn't made EM ?  Right ?! The fear I'm facin is also from knowing that my husband does not fully understand and shows no interests IN KNOWING. I feel alone scared terrified shamed but mostly FEAR !!!

[1oftheclub222]

Sometimes the pharm co. will help with the medications if you can't afford them.  Some people go the clinical trial route for treatment...