QUESTIONS???? Very nervous!!!

[StillChoppin]

I had my first Dr. appt 2 weeks ago which confirmed my hepatitis C. I was rescheduled to go back today after significant blood work to determine the genotype and medication.
My biggest question is the doctor said it looked as if there was significant liver damage today Is he able to tell this just from blood test? I didn't have a biopsy and I didn't have a fibroscan.
He said I must have had this for a significant amount of time which I didn't think I had it for more than 10 yrs, but I may have contracted it over 20 years ago when I got my first tattoo.
He also said that the blood work could be an over estimate in the damage may not be that bad as a showing. He said this is his feeling considering I'm in very good shape in very good health.
I am scheduled to go back in 2 weeks and start harvoni.
I am very anxious to start the harvoni because he said he's has had extremely good results in the past and the liver could possibly repair itself somewhat after treatment. I am just so panicked right now because I was sure that there wasn't much liver damage. Nowe all I can  think about my wife and kids, thinking this is going to take me out.
Has anybody had an experience like this, & if I have good results with the harvoni will I live a normal life??? I haven't been scared of much my whole life, I'm scared as hell now!!! I'm trying get to get it out in here because I know others have been in my shoes, & I don't want them to see how much this is eating away at me...

[KimInTheForest]

Hi Still Choppin. I understand your anxiety. Regarding blood tests and liver damage. There is a blood test called "Fibrosure" which measures degree of fibrosis. It is the blood-test equivalent of a fibroscan. So if your doctor ran that test, then he would have an idea of your degree of liver damage. But he should be able to give you an "F" stage - F1, F2, F3, or F4. F4 is cirrhosis. And even that seems to have the ability to reverse itself somewhat after successful completion of treatment. The lower F stages can all reverse themselves (assuming you are eating well and not drinking alcohol or doing other liver-damaging things).

However, if your doctor did not do the Fibrosure test and is simply relying on viral load and ALT score to say "you have a lot of liver damage", then that would be baseless. Even when those numbers are high, they are not an indicator of how much liver damage you do or don't have, or of how long you have been infected.

So the first thing that I think you will want to do is set up a system whereby you get a hard copy printout of all your lab results from here on on, for your own files, and so you can assess the meaning of the results yourself. Some patients get lab results directly from their doctor's office. Many of us can now download our own lab results from home using an online portal to the lab and a user account that we set up.

Let us know your genotype when you get a chance. Harvoni is working for virtually everyone who takes it. So if your doctor is starting you in 2 weeks, you will likely be cured before you know it, and all this will be behind you. You will have the rest of your life to restore your liver.

kim

[dragonslayer]

>>However, if your doctor did not do the Fibrosure test and is simply relying on viral load and ALT score to say "you have a lot of liver damage", then that would be baseless. Even when those numbers are high, they are not an indicator of how much liver damage you do or don't have, or of how long you have been infected.<<

Well, generally true, however, he could have looked at the  bilirubin and platelet levels, and ALP, and if they were all high, along with AST and ALT,  come to some kind of tentative conclusion...  Needs to be followed up, of course, by a bpx or fibroscan to confirm.

[StillChoppin]

if I remember correctly from 2 weeks ago I belive the lab order he gave me did say Fibrosure.
I hope so they took about 16 viles???
But he said they had to & it wouldn't be that many in the future.
But he did stress that it's only a blood test & it does over estimate in his experience. But the way it looks he said it's borderline cirrhosis.
it also amazes me that had I not had blood work done God knows how bad this would get, without any symptoms???
He said we could do a biopsy but in all reality he said I need medication either way. so why delay it! makes sense.
it just boggles my mind that there is a 99% cure for this devil, but it's price tag it astronomical...
I thank God I have insurance at this point, but either way that's not right.
Everyone should have access to the cure if their is one!!
I will say one thing for sure, if & when this nightmare ends I will do everything I can for others in my position.
it truly helps to know there are others to talk to in here..
thank you

[dragonslayer]

Harvoni was a breeze for me.  Some people are not as fortunate, but for most, its easy.   Good thing you caught it now and are starting treatment soon.   Good luck to you, and congrats on the road to recovery.

[KimInTheForest]

Yes, good luck on your treatment and healing, StillChoppin! Let us know how it's going. Some other members here who went into treatment with cirrhosis have been posting about some remarkable reductions in their fibrosis scores post-treatment. So it does seem that liver damage is reversible even at cirrhosis - at least for some people. But you want to do everything you can with lifestyle and diet to help your liver with that process and not burden it further.

You will likely breeze through treatment. It will be done before you know it.

kim

[StillChoppin]

Hi Kim,
I did request to have all my lab results emailed to me & it shows my genotype type is 1b, I know you asked in a earlier message..
I just have so much anxiety, I never realized how severe hepatitis  C is!!!
my Dr was very reassuring & said he has has excellent results with harvoni & because of my ins. & my fibro score.
But all the what is are still there..
thank you for taking the time to talk to me, it feels good to know a complete strangers that has been where I now am is willing to offer help..
I truly do appreciate it..

[Lynn K]

Well, generally true, however, he could have looked at the  bilirubin and platelet levels, and ALP, and if they were all high, along with AST and ALT,  come to some kind of tentative conclusion...  Needs to be followed up, of course, by a bpx or fibroscan to confirm.

I think you may have meant a low platelet count Paul

The stats I have seen say that only about 20% of people infected with hep c for 20 years will develop cirrhosis so 80% do not.

I had hep c for 30 years before I was diagnosed with cirrhosis in Jan 2008. Even with that I am still here.

There are many here who have had hep c for many years and do not have cirrhosis.

ALT and AST have no correlation to degree of liver damage neither does viral load.

[JoeB]

I think you may have meant a low platelet count Paul

The stats I have seen say that only about 20% of people infected with hep c for 20 years will develop cirrhosis so 80% do not.

I had hep c for 30 years before I was diagnosed with cirrhosis in Jan 2008. Even with that I am still here.

There are many here who have had hep c for many years and do not have cirrhosis.

ALT and AST have no correlation to degree of liver damage neither does viral load.

Yes, you are right. I likely contracted it at 21 in 1983 and SVR'd in July. My fibroscan earlier this year was 6.2 and the 4 biopsies over the years showed mild inflammation. My gastroenterologist speculated, in a chat, prior to Tx being on the cards, that I would probably die of something else. I was inclined to agree with him because my lifestyle didn't exacerbate it.

StillChoppin, it's a lot to take in but I'm sure you'll be OK. The important thing is that you  feel good physically now and when you SVR you will carry on feeling physically good; you might even feel a bit more energetic a few months down the road after treatment. You'll probably be feeling a bit exhausted and anxious on treatment but it will pass. Also, you are NOT getting more ill by the day as Hep C is a VERY slow, progressive disease on the scale of years at least and often decades, as in my case.

[Philadelphia]

Eat well, drink plenty of water, refrain from alcohol and drugs, get exercise and start treatment. All ingredients for a long and happy life. I understand your concern because I went through it too but I'm here to tell you there's life after diagnosis. Add a cure into the mix and you'll be amazed at how quickly the anxiety levels should minimise.

[StillChoppin]