Cirrhosis Support Group

I have been told I have cirrhosis by my primary based on my symptoms. He is scheduling me to GI doctor but its a couple weeks off. I have symptoms of cirrhosis for about 2 months. Splotchy palms, constipation,gas Hair loss, anemia, numbness in my little finger on my left hand, fast heart rate, maybe slight yellowing in eyes. My blood test showed high normal alt and normal Ast. Protein slight high 8.1(upper normal range 8) Albumin 4.8, platelets 356, Rbc, HCT, HB slight low MCV and MCH slight high and normal MCHC. Urine has been darker than normal and tested normal for everything. These were taken about a month ago. He seems to think medication and alcohol has led to this. I have not had any alcohol for 2 months and feel pretty good. Not tired, no weight loss, generally feel ok. Pulse rate is high 100 at some times through the day but in the 80's other times.

When does Ascites develop. How long before I have portal hypertension or even a hemorrhage? With these symptoms is this End Stage or failure? I read somewhere survival is 20% for 1 year.

Hi Jimmyw,

I was told I have ESLD in 2008 after living with liver disease since childhood but not formally diagnosed until 1990. My initial biopsy then showed some cirrhosis. II had portal hypertension and have small variciesbut have not yet experienced a bleed or ascites in the belly. I do have edema in my feet and ankles. I had a tips procedure in February to remove a portal vein clot and to restore blood flow to the portal vein.

I have reddish palms and red spider angeinomas.

My condition worsened in 2008, when I developed Hepatic encephalothopy.

Biopsy will tell you definitively if you have cirrhosis. Not all gastro doctors are up to date on liver disease so you may want to see a hep doctor, too.

Your blood results did not look bad to me, but I am not a doctor by any means. My hep. doctor focuses on my bilirubin, INR, and creatinine results as they determine your MELD score and need of a transplant.

Even if you have cirrhosis and ESLD, it is not an immediate death sentence. They have medications to make lessen the effects of the disease, have procedures like tips to improve your health while you wait for transplant. Don't believe everything you read but listen to your own body.

Susie

jimmyw,

Susie gave you good advice. your Lab work and symptoms can give a dr a hint that your liver is having some problems But will not tell him if you have Cirrhosis.

Actually the alcohol can cause the same symptoms and changes in your labs.

Congratulations on stopping drinking That's a big deal. However it will take time to undo the damage it did to your body. Sometimes years.

As for your labs they do look pretty good. As for the other complications of Cirrhosis. Not every patients develops these troubling symptoms.And many never develop them. Many patients remain stable (compensated) and live a normal life.

Living as healthy a life as possible is the best thing you can do for yourself. Which includes eating right , seeing your Dr as recommended and avoiding all alcohol for ever.

Please make yourself at home and keep us informed.

Thank you for your replies. How long does it take for the platelets to fall and albumin levels to fall once you are showing symptoms? Or should they have been falling leading up to the symptoms? Everything I am reading up on says end stage cirrhosis having these symptoms with somewhat normal enzymes. Can you be that far along and feel good even tho you have some body changes. Would the symptoms I'm having be considered decompensated?

Dear jimmy,

It's just impossible to answer your questions. Each case is different and each occurance is unique. If there's one thing for sure about cirrhosis, it's nothing is for sure. (EXCEPT the part about quitting alcohol forever, that one's a must.)

End Stage is a confusing term when it comes to cirrhosis. I know it scared the hooey out of me when I was first diagnosed almost two years ago. End stage doesn't usually mean you're on your last leg. It's just that the scarring is bad enough to classify your liver disease as cirrhosis. From what you've written, the doc is forming the initial opinion based on labs and outward appearance. Boy can things like that change when you decide, as you have, to start minding your health!

As Susie mentioned, a biopsy is still the most common method of positively identifying cirrhosis. There have been great medical advancements in new and exciting types of scanning equipment and techniques that can diagnose cirrhosis too.

You remind me of me. You're worrying too much, way too early. Gail is so right when she advises "Living as healthy a life as possible is the best thing you can do for yourself. Which includes eating right, seeing your Dr as recommended and avoiding all alcohol for ever."

You should also begin now keeping copies of all lab work you have done from here on, and copies of any other tests related to your liver problems. Many of us keep that information, along with physician's contact information, our medical info (other conditions, current medications, past procedures, allergies, etc) in a notebook for easy reference.

It's great that you are so concerned about your health. Just add a little perspective and don't make yourself sick over the worry. Easier said than done, I know! Good Luck, and know that no question you ask here is a silly one. We're glad to have you! Bobbi

Bobbi, glad you are back.

Jimmy you have been given great information. The main thing you have quit drinking and that is the most important thing you can do for yourself right now. As a former chronic worry wart I can relate to your anxiety. It is hard not too worry but it doesn't make anything better, in fact the stress worry causes can make you feel worse, regardless of the cirrhosis. Wait until you have a specific diagnosis, then discuss all your concerns with your doctor. While you are here read the old posts and members diaries, it will give you great insight. Gail, mpmom, has a website that has awesome information. http://livingwithcirrhosis.weebly.com/index.html

Another thing you will find is that things constantly change-you feel good, then you an feel bad. I am in a particularly great feeling phase right now and relishing it. I'm even fighting that awful fatigue.

This is a great group of warm loving supportive people. Welcome to the group.

Jimmy, what is being said is: you may or may not develop ascites, low albumin, or any of the others. It may be 20 years before any other symptoms develop. You just never know. Each one of us here has developed along a different path.

The one thing I would ignore is the 1 year life expectancy of 20%. That is something that just can't be determined as it depends on the starting point, person and support.

Welcome Jimmy!

You are certainly in the right place . We are all suffering from liver disease, either as the one diagnosed or the caregiver. We all, as has been said will follow different paths. My labs are usually bad, BUT my bilirubin stays pretty good. I am tired, sick and in pain BUT I still have pretty good function for early cirrhosis. I was diagnosed in November 2010 and decided right then that I would go from bad to worse to worst to dead before a year was out. Well 6 months later, I am worse...but thanks in large part to this group and my wonderful friends here, I am pretty sure I won't die this year. But if I do, that is the nature of the illness. No promises. And things can turn on a dime. But read the posts and diaries. We're a pretty tough lot here. A liver is amazing in it's ability to do so MUCH with so little. Those suckers hold out for years....and you have such a wonderful gift! You've quit drinking so you have quit damaging your liver ! That's reason to be hopeful. I know it is scary and overwhelming. Come here for help. You will find it.

Marg

Welcome Jimmy: And hello Marg also. I was like that, marg diagnosed last Sept. and sure I wouldn't see the end of 2011. Nearly scared myself to death regardless of the cirrhosis.Then I nearly died in four days in January, lots of diarrhea, vomiting and blood in stools, I was sure it the end for a whole. Turned out to be a bug nothing to do with the cirrhosis, but it scared the heck out of me. Don't let it scare you so much Jimmy, you probably don't much cirrhosis if any at all. I pray for you that it's none but if there is some I don't think it can be much with your test numbers, but then I'm no doctor, but I would like to have your test numbers I only 51 platelets. I can't even get a doctor to do a biopsy, they're afraid of the bleeding.

You're doing great to have quit drinking. All of my test results are much worse than yours and I'm still here, Heck my doc. tells me I could last 15 years without a transplant, maybe and I'll try but I still think he's a quack. And by the way your test numbers don't sound like you're anywhere near End Stage,

Praying for you, Paul

Tabbtech,

My platelets range from a low of 36,000 to a high of 90,000. I had the transjugular biopsy and had no bleeding problems. When I had gum surgery in 1995, they gave me platelets before the procedure.

Right now, my numbers are mired in the 50,000's.

Susie