stalling off treatment for ten years will this get better

[anciearies]

i am 38 years old and found out in 2001 that i got hep c. i had an ex that had the treatment and didnt tell me till after my son died that he had the treatment 3 months before i got pregnant. my son had trisomy 18 and never left the hospital. they didnt find out till later that it was because of the interferon my son died. i put it off for so long and now i have had two liver biopsies and two more children hep free it is time. u see i cant get a clearance letter from the psychiatrist because of my son dying i cant get past it and have been so depressed and have post tramatic stress whatever they told me that my liver is severly enlarged and it feels like it is coming out of my ribs. i m so scared to have the treatment and i am getting worse and worse. i m sick everyday the dr said until i get the clearance letter saying i am stable enough to start my treatment that i cant do anything. i m hopeless but dont want to leave my kids behind. what should i do i m afraid to be even more sick than i m with all the pain in my liver and aching and tired and flulike symptoms i have a lot of medical issues and noone to talk to. i need a grief counselor and i dont even get that. the doctor has had me on norco or vicodin which i thought makes it worse and i think that is y it has progressed so fast. pls should i do this i think its making me crazy n i cant get out of bed and havent even started. does it hurt is it like chemo??? thank u

[merryBe]

You are describing the worst of all worlds, and my heart goes out to you. It's a triple whammy to have children depending on you, and be grieving anf facing this disease all at the same time. To tell you the truth, if you weren't upset, then I'd think something was really wrong, as it is, you are reacting like anyone would under the circumstances.

I think the thing you might want to ask yourself is what would your son want you to do.
Would he want you to be so grief sticken right now that you stopped and gave up?
Or would he say to fight the good fight mom, to go on because the others need you?
You know he wouldn't want his death to be the cause of taking you away from his siblings, he wouldn't want you to let yourself be destroyed...and so you need to find a way to remind yourself of what he would want, and do that. Try to do that.

I like the idea of grief counseling, but I like the idea of getting right to work on how to treat also. The treatment is hard, and you should ask the psychiatrist for an antidepressant right away, before you start treating, so that you won't get so down while treating, as they take a few weeks to work well,
But you need to work on getting seen and starting the process soon.
MY liver hurt like yours before treatment, but I found out it wasn't all from my enlarged liver,
it was from a combo of things. The liver has no nerves in it, the tissue around was inflammed, partly due to a milk allergy, diverticulitis, and partly due to a bad gall bladder sepage. If you are a dieter and female, at your age gall bladder stuff is common.
YOU can PM me about this for more info.

You need to get evealuated to see what alse might be going on and not just assume it's from your HCV because as I said the liver has no nerves. If it is highly enlarged it can press on the ribs which do have nerves, but gas, diverticulitis and gall bladder sepage can also cause this, even pancreatitis can also cause upper right quadrant pain.
You need to be seen and cared for by a phsician as most of what I just mentioned have remedies.
The HCV can be treated successfully in 75% of patients with the new drugs coming this summer, so it's high time you tried to save your life, so you can love the children you have left and go on to love your grandchildren as well!!.
Please let me know what you decide to do. We are all very concerned for you.
mb

[Trish77]

I'm very sorry about the tragic loss of your son.  Terrible thing to have happen and crushing to deal with.  You sound like you could definitely use some support and that it's been hard to get.  I'm sure you could use more than medication, you could use some counselling.

I don't know if this is in your area, it says it's Mesa, Arizona...they might at least be able to help direct you to where you can get help. This place offers group counselling and support.  If you scroll down, there is a link to an online grief healing support group also:

Hospice of the Valley Grief Support Groups
http://www.hov.org/grief_support_groups.aspx

I hope some of that helps you get started to finding some support and some grief counselling.

As for your Hep C and what your current status is, it would be really hard for any of us to know where the physical symptoms you're having are from the physical results of your depression or your Hep C.  Can you please share what the results of your recent biopsies were and what years you had them?  That's a start to knowing what your status is.

I'd agree....you need to get your depression and your grief addressed for all the reasons everyone else has said well enough, so no need to repeat them.

Wish you well with all of this.

Trish

[HectorSF]

I am sorry to hear about the problems you are having.

First, aching and tired and flulike symptoms are NOT symptoms of advanced liver disease. They are symptoms of major depression.

What is you exact diagnosis?
Where you told outright by your doc that the pain you are experiencing is from an inflamed liver?
What Stage and Grade did the biopsies indicate? When were they performed?
Have you had imaging done? Ultrasound, CT? Does the biopsy report say your liver is enlarged? If so, it should say the size of your liver on the biopsy report. What size is it? If you have the biopsy report please post it so we can help you with this.

Is your doctor a gastroenterologist or hepatologist with experience successfully treating hep c patients?

1. First you need to find out the status of your liver disease. Most people can wait to start treatment. Liver disease takes many decades to develop from hepatitis c. My liver disease took 40 years before developing cirrhosis. So most likely you can wait as others do. Also very few women develop cirrhosis from hepatitis c.

2. You need to take care of your mental issues. People who have a history of depression are more likely to have the hepatitis c treatment cause a depressive episode. That you "can't get out of bed" and are "so depressed" is an obvious indication that you are not ready to undergo treatment at this time.
What are you doing to overcome your mental issues? Are you taking anti-depressants?

Take it one step at a time.
Good luck.
hectorsf

Hectorsf

[Fnzol]

There's a reason why your psychiatrist has concerns.  This treatment can be difficult psychologically.  It can make you irritable, anxious, depressed, angry, confused.  Not to mention very tired.  

Your post and your concerns suggest that you have some issues to resolve before you would be a suitable candidate.  I agree with your shrink.

[Bill1954]

Welcome to the discussion group, and sorry to hear of your troubles.

Tell us more about what the doctors have told you about your liver; have they ever specifically you have cirrhosis? How long ago was your last biopsy, and what stage were you told your liver had progressed to?

Do you know your ‘genotype’, or strain of HCV?

Yes, some people experience depression and/or anxiety as a result of HCV therapy, but certainly not all do. Are you seeing a psych doctor on a regular basis? Do you WANT to do treatment?

Assuming you’re taking norco/vicodin per prescribed dose, it’s unlikely to contribute much to fibrosis; many of us have used those drugs during HCV treatment without developing significant problems.

Some folks get through HCV treatment without too many problems; others get pretty sick from it.

Good luck, and again, welcome-

--Bill