Help me understand what to expect

[Robin0157]

About Me: Female, 53, Norman - OK, member since Apr 2010
Hi I'm Robin0157
Iwas told i had Hep C in 2003,I couldn't get any type of help cause they wanted a liver biopsy.With no insurance,and waiting on trying to get SSI,I was a ... [More] t a stand still.During the stand still time,I go the shingles,ascites.Just in the last year I got my SSI & 2 doctor Primary DR. & GI DR.When I got My liver biopsy I was already in stage 3 cirrhosis with hep C.It was to late to do the any treatment for the hep c.I was in stage 3 for 13mos.but don't know how long I was in stage 3 before they told me.Then shortly after that My primary Dr. walk out on all of his patients.I now have as of 3 wks ago my primary Dr.is Home psysicials & Heartland checks on me every mo.I'm now in stage 4 cirrhosis &hep c with ascites which water pills aren't working now plus I've got fluild on my lungs.3 wks ago the Dr. said at that time I had about 3 liters of fuild.I pray that someone can give me feed back.    

[Robin0157]

Hi I'm Robin0157.I really appreciate your respones,but I'm not eligale for a transplant cause of my cronic Hep C.

[portann]

Hi Robin,

I know nothing about decompensated cirrhosis but there are several very good people here who may be able to make your load feel lighter. I'm sorry for how bad you feel.

My impression is that when we're talking advanced liver disease, like yours, that a person sometimes may have to get worse before he can get better, in order to be evaluated for a transplant. I could be wrong.  I don't know how the transplant lists work but my guess is that your first goal is to see if you can get a transplant evaluation.

I hope Mr. Liver stops by to offer his opinion. He can give you feedback and hope.

In the meantime, here is an excellent thread for you to look at. It's not always on topic but if you scroll through it and look for posts by Mr. Liver and JennyPenny, I think it might help you a bit:

http://www.medhelp.org/posts/Hepatitis-C/stage-4-Cirrhosis-of-the-liver-w--hep-c/show/417294

Don't give up. There are several 'transplant' members here and they're real success stories.

I agree with Jenny, now that you have health coverage, ask for a transplant evaluation ASAP.

Susan

[JennyPenny2009]

I agree with Trinity and think she understood what Robin is saying. The only thing I can offer is perhaps now that you have insurance you can ask for a transplant evaluation. I doubt they will treat anyone with ascites.

[Trinity4]

I believe robin0157 is talking about stages of cirrhosis, not stages of fibrosis.

Using the Child-Pugh score, cirrhosis itself is graded into three stages:
A, B & C
Stage A ("compensated"; not too sick)
Stage B (beginning to decompensate; complications beginning to appear)
Stage C ("decompensated"; end stage)

Doctors use something called a CTP Score, to see what Stage of cirrhosis that a person is in.

The CTP Score is based on FIVE QUESTIONS.
You receive a point value (score) for each of the answers.

Here's how it works:

1. Total Serum Bilirubin
.....if Bilirubin is 3 mg/dl: score 3 points

2. Serum Albumin
.....if Albumin is >3.5 g/dl: score 1 point
.....if Albumin is 2.8 to 3.5 g/dl: score 2 points
.....if Albumin is <2.8 g/dl: score 3 points

3. INR
.....if INR is 2.20: score 3 points

4. Ascites
.....No Ascites: score 1 point
.....Ascites controlled medically: score 2 points
.....Ascites poorly controlled: score 3 points

5. Encephalopathy
.....No Encephalopathy: score 1 point
.....Encephalopathy controlled medically: score 2 points
.....Encephalopathy poorly controlled: score 3 points



   1. Total your score.

      Sum total score gives grades of:
      5 to 6 points = Stage A Cirrhosis
      7 to 9 points = Stage B Cirrhosis
      10 to 15 points = Stage C Cirrhosis

[hopefulgirl38]

Hi there,

My partner is 53 with cirrohsis and is currently undergoing treatment that seems to be working, we live in Canada so access to specialist and treatment is not based on insurance or even having money. I have seen many postings that are from people in the US that access drug trials.  Not sure if this is a possibility for you ....other peopleon this site know much more than I do though...good luck and dont give up.  Because you have cirrohsis does mean you cant do treatment.

[Diane12855]

There are lots of people on here who did treatment at stage 3. Are you limited to going to only those doctors? If not, you should get a second opinion about treating.

I'm glad you found this place. There are lots of caring people who can answer your questions. Also, if you'll scroll up to the top, right side of the page, you'll see "health pages". They have lots of useful info that you'll want to read too.

Welcome, and I hope things get better for you.