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I find this to be a death sentence

by elyse1, Sep 21, 2009 09:44PM
Tags: Death, help
Were do I go now and how will I survive.  I have some liver damage and I am starting the treatment in 2 weeks.  I am only 34 and I worry about my future.  I have always know that once yhou have liver damage yhou screwed.  PLEASE HELP ME.
Member Comments (15)

by Bill1954, Sep 21, 2009 10:18PM
Hi Elyse,

I’m not sure where you got the info that having liver damage is fatal, but you’’ most likely be fine; only a small percentage of Hep C patients will eventually succoumb to the disease. Some studies show that as little as 5% will die from this.

What do you know about your fibrosis? Can you tell us more about yourself_

Bill

by Debbie556, Sep 21, 2009 10:31PM
To: Elyse
The telprivar treatment will be out soon. The Dr.'s are even finding that some of the damage can be repaired. Remember the liver has the ability to heal itself somewhat

by jdwithhcv, Sep 21, 2009 10:32PM
To: elyse1
Oh, relax.  If you are going to do this treatment you will not have any energy for such drama.  Read and learn, this is not the end of the world.  So calm yourself.  We will help you.

jd

by JennyPenny, Sep 21, 2009 10:37PM
Elyse, try and stay calm honey, You have the wrong information. Even I, who have had this disease since I was 21, and I have cirrhosis, as still here alive and kicking. BTW, I will be 65 next month.....you'll be fine.

by YuK, Sep 21, 2009 11:08PM
Elyse - This is not a death sentence.  Why geno type are you?  How long are you treating?  What is your viral load?

Make sure get copies of all your labs from the doctor and record your start date of the treatment.  

by stogey, Sep 22, 2009 12:30AM
I understand how you feel, felt that way too-not an uncommon reaction when first diagnosed. Elevated AST/ALT are biochemical markers and do not necessarily mean you have "liver damage." Be nice to your liver-no booze, know your meds if you take any, and most of all be informed: ask, read, google. Write your questions down, ask your doc and don't leave till they are answered. Sharing what's on your mind with someone helps, least it does me. It is NOT a death sentence, it is a chronic, treatable illness. Information, support and staying involved got me through treatment. Keep in touch, thanks, Stan.

by Lindaz, Sep 22, 2009 01:17AM
I felt the same way as you did when I was diagnosed.  
Pre-treatment is a scary time.  I can remember how anxious I was.  There are lots of what ifs etc......lots of doubts too.
The only advice I can give you is to keep the lines of communication open with your medical team and family members.
I wish you all the best
Linda x

by jimmatthews102, Sep 22, 2009 10:56AM
Hepatitis c is not a death sentence.I felt the same way when I found out. I was only 18 when I found out. I am now 29. I relapsed after my first treatment. I just finished my treatment with infergen 3 months ago. Your about to go on treatment and that is a great start. Stay positive and keep going forward. My doctor told me there is so much hope for people with hep c.

by nygirl7, Sep 22, 2009 11:38AM
You have to take an optimistic stance and stick with it or treatment is going to be almost impossible for you. Remembering that you are doing this to be CURED and to not someday have to deal with end stage liver damage is the point. Over reacting and being pessimistic will make the tough days on tx almost impossible to deal with and to continue onwards.  What would be the point of treatment if you think you are going to die anyway?  Try and remember it's about long term health.  Otherwise you are really going to struggle big time.

by copyman, Sep 22, 2009 01:09PM
There is a saying that has been used many times:

"most people will die with hepatitis c, NOT from hepatitis c"

Relax, you will be fine.

by newleaf09, Sep 22, 2009 05:51PM
Your reaction feels very familiar; I felt the same whenI was diagnosed and had a really hopeless week after getting back the biopsy results.  You need to understand that the liver is the only internal organ that can repair itself if the factor that is causing the liver damage is removed.  In the case of Hepatitis C virus, clearing the virus through immunotherapy (your treament in 2 weeks)and being cautious about what other toxins you subject yourself to can make all the difference in the world.  There are people with great liver damage who repair the damage completely after successful treatment and it is not uncommon to heal fibrosis by one or 2 whole stages within a few years of clearing the virus.   Treatment is not fun, but it is bearable and you can do it and stick with it.  The hopeless feeling will begin to lighten as soon as you start treatment, just from taking the necessary steps to regain control of your future. Good luck.

by Trish77, Sep 23, 2009 06:13AM
To: elyse1
Most of us felt the way you do when we first got the diagnosis.  Maybe drama and over-reacting to people a little more removed from it now but at the time it seemed like my whole world had dropped out from under me and I remember that distinctly.  Many of us felt that way, as others have posted to you and as we started to learn and educate ourselves about the disease, we found out that we have options.

If you're starting treatment soon and you still feel like this - and based on your reasoning, simply because it's a liver disease and not based on your genotype, your amount of liver damage and any knowledge of how fast this progresses or anything at all - I'd say your medical team has done a poor job of educating you on Hepatitis C and that you have ALOT you need to learn about this yourself and that you're relying on your medical team for information - maybe you need to get out there and seek out your own information - which is probably why you're on this forum.   So good on you for having the guts to post where you're at and how you're feeling and to be looking for information.

So here's something to think about - not even sure you should be starting treatment yet as it doesn't seem you know enough about Hepatitis C and your own situation to decide if treatment is best for you right now.  You sound like you have one of those doctors who has told you that you need to start treatment simply BECAUSE you have Hepatitis C and it's something you need to get rid of asap.  Not necessarily the case.

Care to post what genotype you are and if you've had a biopsy and what stage liver damage your biopsy pegs you at if you've had one?   When are you expected to start treatment?

To put it in perspective for you, I had Hep C for approximately 20+ years and I had only minimal Stage 1 liver damage.  I've been incredibly healthy my whole life.  Not exactly a death sentence, is it.   You need more information and you need to take some time to educate yourself before putting yourself through treatment on some pretty serious drugs.  I hope you'll do that.  Ask any questions here you like.  

Trish

by IAmTheWalrus, Sep 23, 2009 07:27PM
To: elyse1
The race does not always go to the swift, but the battle is won by the strong and persistent. You are a long way from the end here and there are really good probabilities that you will not have to face any dire situations. Read up and ask questions (this forum is really good for this).  The picture will become much clearer and it will be much brighter than you imagine.

Good luck. Hope you stay in touch.

by GoofyDad, Sep 26, 2009 12:11AM
To: elyse
Are you still around? Let us know if you are and we'll step you through some things you'll want to ask about or think about.

by Bali05, Sep 26, 2009 04:05PM
To: elyse1l
all of the above comments are very true.Hep C is by no means a death sentence never never ever let anybody
tell you that .Nobody knows for sure
when time is up just like before dx.

Focus on your health and on living a healthy life with the virus.
If you feel up to it you can try and kill it to.

Bali05
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