searchingforsun.........this is Mari74's 'thread', and it's old.
It gets too confusing to add your help, questions into it, please calm down, take a breath and create your own thread. Go to post, copy paste the above and you'll have your own thread for others to help you.
I can do it for you, if you can't figure it out.
LL
help me i can't handle this im 22 and still live at home and cannot deal with this at all i need my dad...
im so confused and overwhelmed he hasnt seen the specialist yet...went to the hospital feeling sick and all this came about...he had his veins banded and had fluid in abdomen and portal hypertension...no bleeds as far as we know...but doctors say his blood work is good and bilirubin is only 1.3 and meld score is only 9? i dont understand how he can have those bad symptoms and "good" bloodwork and meld score? is it possible for him to live 5 years? docs say symptoms came on due to a reaction from a virus/infection? could this be true? he has cirrhosis from undiagnosed hep c combined with moderate alcohol consumption...
please help me im desperate...i already had anxiety before this....now i can barely eat and sleep
From the link I posted above:
http://www.medscape.com/viewarticle/501268_1
"Once the pathologic stage of cirrhosis has been reached, clinical scales such as the Child-Pugh score take over for the staging of the liver disease. During this stage of clinical progression, cirrhosis may continue to progress pathologically in that fibrotic bands widen, more vascular shunts form, and the remaining parenchyma loses any semblance of normal architecture. However, only the Ishak modification of the Histologic Activity Index (HAI) tries to subdivide cirrhosis with its categories of incomplete cirrhosis and definite cirrhosis,[18] and no published system tries to subdivide more advanced degrees of cirrhosis."
Mike
I certainly don't mean to denigrate nurses in general because I have been around some great ones but, I have learned never to ask nurses or technicians any really important questions. If they say something encouraging I still want to hear it from the doctor and many times their mistaken information leads to needless anxiety. I realize that it is not always easy to speak with the doctor but I tune everyone else out completely - except of course the members here because we do know what we're talking about, don't we? Mike
I was told that it is Stage 1 of Cirrhosis.
I was also told that I will need a ultra sound test before I go back to discuss my treatment with the nurse or doctor.
How is treatment? I have read many different reactions...some positive and some negitive.
Mari
I called the nurse and ask her what stage of cirrohsis I was into and she said that cirrohsis is cirrohosis.
Maybe she just doesn't want to give me the really really bad news.
Stage a
Stage b
Stage c
I am happy to hear that your health and stage level is getting better on the treatment.
Well, the nurse is wrong. Cirrhosis is NOT cirrhosis.
Here is a good link explaining it better:
http://www.hcvadvocate.org/hcsp/articles/Herrera.html
Sometimes I wonder what nurses are thinking when they say stuff like this. First off, they are never supposed to draw any conclusions about your health, only the doctor can do that. I particularly dislike it when they give out incorrect information. They should know when to keep their trap shut. Especially when it is about a serious condition like this. Hope the doctor can shed more light on your situation for you.
I totally agree with this and don't like the nurse saying "well cirhossis is cirhossis" hey lady...its MY LIVER and I want to know!
Some of these people...who think they know it all and just don't.........
"I'd speak to your doctor, discuss with him what stage he thinks you are in and have him go over all the biopsy findings with you so you are clear. Early cirrhosis can be reversed in some cases. Stay positive!"
Try hard not to despair because this is not the end of the road by any means. Just educate yourself, get good medical advice and exercise due diligence - take it one step/day at a time. As my Mother always told me: "don't borrow trouble". Good luck, Mike
I have found out more info here this morning then I have with the medical field.
I am very thankful for all of you for your help at this point in my crisis. Many Thanks and I will let you all know what is going on.
A good doctor WOULD have called you with information like that. But unfortunately most times they do have the Nurse call us. I got lucky with my doc - when I finally got UND he called me himself. when I was diagnosed having autoimmune thyroid condition he called me himself. Most don't though.
Confirm SHE read the results correclty.
I am not sure why they are not aggressively looking to treat you. Perhaps you do need to see another doctor as a second opinion. I sure would NOT let someone talk me out of treating - because even if you for some reason don't get SVR...it would do your liver good most likely to have the break from the virus attacking at least.
You know what I mean? You COULD reverse some damage and this is worst case scenario. So why not go for it?
I agree with Mike, don't despair! You asked if there are different stages of cirrhosis above and the answer is yes, there are. There are 3 "classes" of cirrhosis grading, class A, B and C. The class distinction is determined by a variety of blood test results,liver function results and symptoms you are having along with your biopsy reading.
It is not unusual for the doctor to behave as if the diagnosis of cirrhosis is no big deal, when my doctor told me it seemed very casual to me but from my point of view I was very scared like you. To them it isn't such a huge deal, they have seen far worse is their take on it I think. Plus, what good would it do to have your doctor behave as if the sky was falling? That would not inspire confidence in the patient!
Keep in mind up to a point liver damage can be reversible, our livers can regenerate. They are not exactly sure what that point is, but it looks like if you are in "class A" that you have a fighting chance of histological improvement. Even in more advanced classes some have improvement. It is not a linear situation.
Your best move from my perspective is to treat the virus, that will stop the assault on your liver and give it a chance to heal. I'd also eat a very liver friendly diet and lose any excess weight you might be carrying. You might want to investigate supplemental support also. Although they can't stop the virus, they can promote healing and give your immune system some additional support.
I'd speak to your doctor, discuss with him what stage he thinks you are in and have him go over all the biopsy findings with you so you are clear. Early cirrhosis can be reversed in some cases. Stay positive!
Check out MKAndrews Hep C site at www.MKAndrew.com for his inspiring story, he has treated several times but was unable to clear the virus, he too had a similar stage of damage as you and I. His liver biopsy now shows him at stage 2. Even though he is still fighting the virus. You can see that treatment is an enormous positive in suppressing the virus and that liver damage can be reversed. He no longer is diagnosed with cirrhosis.
Hang in there Mari, I know the feeling when you get news like this but it is not the end of the world, you can fight it and win. I have been treating a year+ and had a Fibroscan a few months back that indicates I am now stage 3. Keep your chin up!
The nurse called it Cirrhosis of the liver. I will try tog et the report from her ASAP. This doctor is a specialist at Northwestern Hosp. in Chicago. I think he
is suppose to be one of the best??????????
I just wish he would have called me instead of the nurse!
First, of course, confirm you indeed have cirrhosis. But assuming you do, people are treated successfully with cirhossis all the time. Since they seem reluctant to treat, you might want to get another opinion. I'd suggest a liver specialist (hepatologist). You can usually find them at your larger teaching hospitals. Many here have cirrhosis, treated and live very normal lives. Also, depending on what stage of cirrhsosi you have, it can be reversible according to the latest thought.
All the best,
-- Jim
The biopsy results are captured in a couple of ways. The samples that were taken we used to prepare slides which are examined by a pathologist. These slides are retained and stored (in my bx, the hospital where the bx was done have the slides in storage somehere). The pathologist should have written a report that describes the speciment that was taken, narrative about what was viewed and the summary results - which you already know. Ask your doc (not the pathologist) for a copy of that report and keep it in your file at home. It may be helpful, for possible future reference, to know where the slides are as well. There might come a day when you you seek other opinions and the slides may come into play then. But, start by getting a copy of that biopsy report.
See:http://www.medscape.com/viewarticle/501268_1
The Liver Biopsy in Chronic Hepatitis C: A View from the Other Side of the Microscope
To view you must be registered but it's free and easy
"Staging, in the broadest sense, is the determination of the position of the patient on the continuum of disease progression between its initiation and its end stage. Grading is the assessment of the activity of a disease, which is the rate at which the disease stage is changing. In the natural history of most chronic diseases, the stage of the disease generally increases with time, although relapsing or remitting diseases may be examples of diseases where the stage may temporarily decrease. The activity may increase and decrease as a disease flares and subsides, or may remain static throughout the disease. Therapeutic intervention typically has most of its effect on disease activity."
Mike
I have ask for a copy of the biopsy report yesterday. I hop e they sent it to me. I am so confused. I am afraid.
Are you sure it's not Grade 4 Stage 1?
Can you type out what it says on the report so we can see what it says, I'm a little confused as that seems very odd to me...such advanced liver damage with so little inflammation. But then - what do I really know it could be possible. Just seems odd to me.
I am not a specialist but geno 1a is not a great type to have they say its the hardest to clear. as for the rest there are people here that are more knowledgeable in this area ie jim. I hope he reads your post. Just hang in there and try to relax..best wishes :)shelly
Type out some of the specifics of your biopsy report. This is odd to me. Grade indicates the amount of inflammation (which is caused by the hep C virus) and grade one is rather mild. Stage 4 indicates an advanced amount of fibrosis (scarring) and normally it takes a lot of inflammation to get that much scarring. Please give more details.
I used this site to understand my biopsy report.
http://janis7hepc.com/biopsy.htm
frijole