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Avatar universal

Scared and depressed.

My basic liver panel is normal.  I have URQ pain.  HCV+ for 35 years.  Icky breath/dry mouth.  Pulse/BP are up and I cant sleep. Losing weight and muscle fast.   I think I have Cirhosis.  Hoping to do 7977 trial in October, but I don't know if I can make it that far.
19 Responses
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1840891 tn?1431547793
That's some very good advice you've been given. It's time to take charge of your health as much as you can – all the worrying in the world won't make anything better, and might make things worse by adding more stress-related illnesses. Make sure you are seeing a top-notch hepatologist for starters. If you are relying on a primary care sort of doctor, or even a gastroenterologist – it's not good enough. Look for a good hepatologist and let them do a full work up, including a biopsy. Then talk about the best treatment options for you and follow through.

Your symptoms could be related to cirrhosis, but not necessarily. It's really not a good idea to jump to conclusions, especially to scary ones. On the other hand, cirrhosis itself isn't the end of the world, and many people continue to do well for a really long time after the diagnosis. I was diagnosed with cirrhosis around 2004 and my liver is still doing pretty well. I'm just finishing up a 48 week triple tx with Incivek, and have high hopes that it will have cured me. If it does, then I have a good chance at living a pretty normal lifespan still. You might be in better shape than you think! What you really do owe to your kids is that you make every effort to beat the virus and at least keep your liver as healthy as possible, but if possible, give it a chance to really regenerate. Best wishes for a full recovery!
Helpful - 0
766573 tn?1365166466
No one on here is suggesting you need to "Man Up." I bet you have lots of years with your girls left. Lots of years to pay for clothes and school and weddings while they date guys you hate and borrow your car :)

Just kidding .

~ All of us felt just like you in the beginning. You need more solid info. Analyzing your symptoms when you are scared and depressed can keep you stuck and trapped. Maybe it is a stage toward being ready since I kind of went through that too.

Best of luck
Helpful - 0
163305 tn?1333668571
Your ALT and AST are good.

You really need to see a good Gastroenterologist or Hepatologist for help.
Too much tylenol and ibuprofen can cause liver damage.

Please go see a good doctor.  If you already have, what does your doctor tell you ?

Here's a link of doctor's recommended by our members.

http://www.medhelp.org/posts/Hepatitis-C/Who-is-your-good-doctor-/show/1715783
Helpful - 0
Avatar universal
ALT/AST Ratio = 1/1.  Both in teens or 20s.  Getting brain fog before stool, smell ammonia, pain RUQ which was explained as IBS and muscle pains for years.  I worked out all the time, so they told me to take tylenol or IB all the time.  Now impotent, unable to cry, cant sleep even with drugs, etc.

Sorry not to MAN UP but I'm thinking about my 4 and 7 y.o. girls, etc.
Helpful - 0
163305 tn?1333668571
When I was diagnosed with advanced cirrhosis ( decompensated cirrhosis) I had no pain but a huge enlarged belly from ascites. My liver panel numbers were way high and my doctor gave me 5 years.
Don't worry, you will make it until October.

How many years you've had the virus isn't relevant. Some people have it their entire lives and have no problems.

As the others have mentioned you have not given enough information to have any idea if you have cirrhosis or not. Why do you think you do ?
Are you seeing a GI or hepatologist ? It sounds like you should be.
What did they tell you ?
Helpful - 0
2061362 tn?1353279518
You don't offer a whole lot of info, including results of any liver biopsy, which you probably haven't had recently since you don't know if you actually have cirrohsis, also genotype, prior treatment/treatment naive, etc... Will is right about several different maladies, so you may be getting ahead of yourself. You really need to have a current biopsy done in order to determine if you can in fact participate in a trial. The only 7977 trial I know of for patients with cirrohsis are for pre-transplant patients. Good luck and keep us posted.
Helpful - 0
3242225 tn?1348336521
you need a plan B  because the studies for 7977 do not take anyone with advanced liver disease.  Here is the exclusionary criteria copied right from one of the 7977 studies.:
Exclusion Criteria:

Prior use of any other inhibitor of the HCV NS5B Polymerase.
History of any other clinically significant chronic liver disease.
Evidence of or history of decompensated liver disease.
HIV or chronic hepatitis B virus (HBV) infection.
Hepatocellular carcinoma (HCC) or other malignancy (with exception of certain resolved skin cancers).
Chronic use of immunosuppressive agents or immunomodulatory agents.
History or current evidence of any condition, therapy, laboratory abnormality or other circumstance that might confound the results of the study, or interfere with the subject's participation for the full duration of the study or not be in the best interest of the subject in the opinion of the investigator.
I don't mean to sound harsh but you need to get a doctor and get things sorted out like a grown up.
Helpful - 0
131114 tn?1380083190
yes let us know more about your doc, you labs and your prior treatment if you have. hang in there and if we can, we will help you with tx options, there are some very informed people on this forum.

keep in touch.
Helpful - 0
Avatar universal
welcome to the forum.  i recently finished treatment with incevik and am experiencing cirrhosis.  it was not easy, but i would do it again in a heartbeat.  i have experienced URQ pain constantly for 5 or 6 years and about one month into treatment most of the pain went away.
the current treatments cures most of us and much better treatments are on the horizon. the first step is to consult with a gastroenterologist that has mucho experience with treating hep C or better yet a hepatologist.  perhaps you already have. you will also find knowledge and compassion on this board.  i think some of the posters here have more knowledge about HCV than many of the docs treating this disease. responses can be a little slow on the weekends.
eric
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Avatar universal
" I think I have Cirhosis"

********************************************
From your profile I can't tell if you have had a liver biopsy or not. I seriously doubt your Dr would let you into a trial without having one.

"but I don't know if I can make it that far"

*****************************************************
I think your anxiety is getting the best of you and understandably so.  We have all been through this when being first diagnosed.  You should really seek a qualified Hepa Dr and get a biopsy to understand your exact liver damage and then decide a game plan.

Take care of yourself!

Jules
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Avatar universal
Thanks folks.  I'm pretty bummed, as I'm now having other symptoms.  Have a good day.
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766573 tn?1365166466
Hang in there. Hope you make it into the trial♫

I have heard those lab values used in the context of 'biochemical markers' when it comes to cirrhosis fairly often. I used to think Alt & Ast were the indicators of most live pathology

Lab: High (prolonged)  INR, low albumin, high bilirubin, low platelet count (splenomegaly)

As Hector says in this link, "...there are many other things that happen internally to because of cirrhosis. ."
http://www.medhelp.org/posts/Hepatitis-C/Platelets-and-Cirrhosis/show/1502542
_______________-
This is a lot of slides but Hey ~ they are easier to follow than a journal article :)

Here is slide 44:
http://www.medhelp.org/user_photos/show/290520?personal_page_id=1282072

Another:
http://www.medhelp.org/user_photos/show/290521?personal_page_id=1282072

This is just an example. They mention other indicators as well :)

Slide 5 lists Breath tests - aminopyrine (mixed function oxidase mass) ->whatever that means :)

Slide 7 addresses the reason Alt/Ast aren't always the most telling values

Slide 32 and forward addresses Hepatitis
http://www.docstoc.com/docs/72647417/Interpreting-Liver-Associated-Enzymes-Hepatic-Serology-and-Liver


Helpful - 0
Avatar universal
lLke I said       sorry my interpretations confuse you...

Will
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201379 tn?1319991331
I haven't heard markers used in that context. I associate markers with tumor markers such as AFP or various other tumor antigens.

INR is not a direct measure of clotting time. It is a ratio of prothrombin time from the patient with the measurement from an international standard.  I didn't mean to imply it was ever a negative number but that it will always be positive, that is, greater than zero.
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Avatar universal
I did not think my use of the words markers was confusing at all.

Blood tests are marked with certain values therfore I sometimes refer to them as blood markers or just markers

As I said in my post to the OP..very often(not always ) the four markers will be off normal values in chirrotics helping sometimes with early diagnosis

INR is the time for clotting and is very often raised in patients with cirrhosis  and not positive or negative as you suggest..

Sorry you are seemingly confused..

Best..

Will
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201379 tn?1319991331
Will: your use of the word markers is confusing here. Albumin and platelets are normal constituents of blood. You will always have a positive iNR value. Can you clarify your use of "markers" here?
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897070 tn?1320652629
Yes willbb is totally correct, do you have further details of your blood results so that people can make more informed comments. Have you ever had a biopsy or relevant scans ? Cirrhosis is only diagnosed from interpreting the data from a couple of sources-blood being only one of them. Understandably you are probably experiencing a fair amount of anxiety in this situation, anxiety as we all know can lead to worst case interpretation of whatever is going on.

Try to get some further information, good luck.
Paul
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Avatar universal
damage or not is by having certain blood markers (ie  INR,albumin ,bilirubin and platlets
--------------------------------------------------------

sorry   ..meant " having  these blood markers"    ... the word "not" should not have been inserted

Will
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Avatar universal
The symptoms you are experiencing may be a result of numerous maladies and not necessarily cirrhosis.
The only way to ascertain if you have extensive liver damage or not is by having certain blood markers (ie  INR,albumin ,bilirubin and platlets)

These can often give indication of being chirrotic,however the ultimate test for this would be a live biopsy or possibly a Fibroscan and /or Fibrosure test

Not making it till Oct. would be unlikely as this is three weeks away and often if one is chirrotic may live many many years with the proper care.

Hopefully you have a full work up and the appropriate tests done by a Gastroenterologist or Hepatologist to ascertain your condition.

Good luck and welcome to the group..

Will
Helpful - 0
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