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4104721 tn?1349824197

New- Hepatitis 4 help

I have very recently been diagnosed with Hepatitis 4.  I don't know the subtype.  I have been reading up on it and am discouraged.  Before knowing my genotype, I was really putting all my eggs into one basket, the basket of interferon free tx.  I have been reading up on this genotype and it doesn't seem good.  Research and medical progress rely on how much money is involved.  And since this genotype is rare in the US, I have lost any hope I had.  I am a former IDU and am assuming that is how I contracted Hepatitis.  But 4? Why? And I don't have an appt with my hepatologist for another 6 months. Have only had one so far.  I had an ultrasound.  He didn't recommend a biopsy at this point.  And we both agreed on holding off on treatment... the whole wait and see scenario.  I am terrified of interferon. Period. I feel like I've been handed a death sentence.  And my life was already a train wreck.... trying to straighten things out and finish my masters, get married, start fixing my finances, etc. now that I'm sober.  Then, this bomb gets dropped on me.  
-kat
8 Responses
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1652596 tn?1342011626
i don't know where you heard you could only have 15 years left...but that is not true.  i had hep c for 37 years and never knew i had it.  i treated this last year and i'm in my 60's.  do not give up hope.  btw, i had 2 sons while i was infected and they're both fine.  this isn't a death sentence.  wake up girl and learn about this virus.  you can do this.  best wishes.  belle
Helpful - 0
Avatar universal
My husband has had Hep C for 38+ years.  He was diagnosed in 2007.  He has tried and failed 3 treatments.  He works full time and is waiting for the next available treatment.  You can choose to be depressed about having Hep C and do nothing and take your chances that it may cause progressive damage over years, or you can choose to live your life, learn about your virus, and take action to prevent it from progressing if/when there is a treatment option that you and your doctor feel would be beneficial to try.  
Advocate1955
Helpful - 0
766573 tn?1365166466
Only 15 years left to live?
You will feel more in control and a sense of hope when you learn about the virus.  I encourage you to obtain copies of your labs and ultrasound report. Not knowing the stage of fibrosis you are seems like it is compelling you to assume the worst.

Part of me is a little angry with your doctor for letting you walk out of his office with such a poor, grossly inaccurate outlook for the future. Granted we have to learn a lot on our own since you will see there are lots of people in medicine who no nothing about HCV.

__________________
Helpful - 0
163305 tn?1333668571
Are you kidding me ???
You need to get a grip.

When I was diagnosed I already had been infected for 30 years and had decompensated cirrhosis. Hearing the words End Stage Liver Disease was a reason to be scared.

Having an ultrasound that looks fine and having had the virus for only 4 years is great news.

The virus moves slowly and does not cause liver damage to everyone.
The new oral meds will be available in a few years and just because you're geno 4 doesn't mean they won't work for you.

Be thankful you are healthy.
Go see your therapist or whoever helps you with your disorder because hep C is the least of your problems.

I'm only alive because I had a liver transplant and I wish I had been in your position.
Wake up, you are lucky !!!
Helpful - 0
4104721 tn?1349824197
According to my ultrasound, everything "looks fine".  That's what I was told.  I had scheduled to see my hepatologist in the next 6 months but after finding out the genotype, want to see him again, sooner, and discuss what he knows about this genotype.  The longest I could have been infected is 4 years, but I did have a rapid hep C test that came back negative 2 years ago.  I thought that waiting for newer drugs to be approved was my best option, but now I don't know what to do.  I read yesterday about only having 15 years or so left to live.  I can't seem to continue on with my life.  I literally don't leave my house and having been someone who has struggled with bi-polar for 10 years, I have plummeted into a depression.  I don't know what to do.  I don't have a job or income.  And it seems pointless to do anything right now.  If I'm going to die, I don't care about fixing my debt or even working.  I had so many hopes for my life, maybe a baby one day, a job helping others, and now I feel like none of that is realistic.
Helpful - 0
766573 tn?1365166466
Greetings. I think we are all a little freaked when we are diagnosed. It is just such a shock.
What were the results of your ultrasound?
What stage of fibrosis are you?

The stage of fibrosis is often one of the factors that helps us decide when we want to treat. The more you learn about the virus the more in control you will feel and the less hopeless. I personally think you are doing things in the right order.  You have a lot going on right now what with school and getting married. imo Jumping right in with little preparedness or insight is the biggest mistake you could make.

Either way I know it might seem like it but HCV is not a death sentence. ☆Well, it does not have to be.☆

__________________________-

You probably already saw this but here is a journal article from 2011
The future for the treatment of genotype 4 chronic hepatitis C
http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02704.x/abstract

I can only think of two people who treated and are Geno 4. One is named Zako and he is usually on line fairly often. He treated with one of the PI. Here is his profile:
http://www.medhelp.org/personal_pages/user/1759022

Another is someone whose user name is Bali who is G4 and is very knowledgeable. Here is his profile
http://www.medhelp.org/personal_pages/user/979080

Here are a few links:
http://www.medhelp.org/posts/Hepatitis-C/Genotype-4/show/1481222
http://www.medhelp.org/posts/Hepatitis-C/genotype-4/show/1569801
http://www.medhelp.org/posts/Hepatitis-C/Genotype-4/show/998854

This thread has a post that has the url for a slide show:
http://www.medhelp.org/posts/Hepatitis-C/need--a-treatment-for-Hepatitis-c-genotype-4-/show/1753576

This is an oldie:
http://www.medhelp.org/posts/Hepatitis-C/Hep-C-genotype-4-with-Cirrhosis-grade-A---51-years-old/show/1041864

Hang in there and be sure to let us know how you are doing ♫



Helpful - 0
317787 tn?1473358451
Hi I found a post from 2009, I will put it below.  I read another post that said Geno 4 is treated like Geno 1

http://www.medhelp.org/posts/Hepatitis-C/Any-Geno-4s-out-there-/show/1089885

More soon, hang in there, google HCV Geno 4, I am sure you will find something

Good luck! :)
Dee
Helpful - 0
317787 tn?1473358451
Hello!  Welcome to the forum.  You are going to meet some of the nicest most supportive people on here
I think we all felt the same as you when we first received our diagnosis.  I know I thought it was a death sentence.  It took me months to calm down, stop crying, wrap my brain around it.  You will do the same.
I don't know much about HCV 4 but I will do some searching and come back to you.  I first wanted to say that you are among friends and there are many very knowledgable people here who will help you.  I am going to go search and will be back
Breath...take a walk...scream...cry..talk to a friend or talk here.  Do what ever you need to do to come to terms with this
It is not a death sentence.  More very soon

Hugs to you
Dee
Helpful - 0
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