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Posted 1/14/2013 5:26 AM (GMT 0)
I am new to the forum and I am hoping someone can help me understand what is going on with my body. In 2010 I was diagnosed with cirrohsis of the liver. I was put on lactulose and was told not to drink. For the past two weeks, my finger tips at times are cold and go numb. My face is starting to stay flushed or red. I am extremely tired and starting to loose my appetite. I am very irritable and it's like my days and nights are mixed up. I can stay up all night and sleep during the day. This is very odd because normally I can not sleep during the day. I haven't had these symptoms since I was diagnosed.

I am scared that I am getting worse. When I was diagnosed my doctor said I in stage 2. At the time I was drinking and he told me that I continued to drink I had 2-5 years to live. I quit drinking all together. I have two wonderful daughters ages 15 and 13. I want/need to be around for them.

I just moved to a new city so I don't have a liver doctor here yet. I just moved in December. Can someone please tell me if they have ever heard of these symptoms and what is the next step for me??

Thank you...
Posted 1/14/2013 10:15 AM (GMT 0)
Hi I can't help much as I have no knowledge of the disease and I am currently awaiting the results of my own liver function test so I don't know what to say to reassure you only that I feel you should try to stay positive and get yourself a doctor as soon as possible.

I'm sure one of the more experienced posters/ moderators will be around shortly to answer your query :-) I hope you feel better soon.
Posted 1/14/2013 12:00 PM (GMT 0)
 Welcome , You say your diagnosis was in 2010 and that's actually when you quit drinking or did you stop later ? Did you start any medications at the time ? Have you completely quit drinking ? What if any effects had you been suffering prior to the diagnosis in 2010 and was a biopsy done to verify the diagnosis of Cirrhosis ? If it has truly been confirmed you have the disease , have you followed through with proper diet and medications to prevent further damage ?

These are a good line of questions and much needed details you will be eventually asked here . Of course none of us are doctors here and this forum is a knowledge base for people who are patients and caretakers alike , Valuable insight can be gained by our combined knowledge via personal experience but we are no substitute for a Hepatologist .

Again , Welcome to the forum .

A. Ziffle  

Posted 1/14/2013 4:47 PM (GMT 0)

Welcome tre~tre,

Did they say your cirrhosis was caused by alcohol?  Just wondering.  Anyone with any liver disorder is told to stop drinking but it doesn't mean that that is what caused the problem so a little more insight would be helpful.  I'm very happy to hear that you you have quit fully.

Do you notice the whiteness and numbness in your toes as well?

How often do you see the doc and have blood tests?  Even if you don't have a liver doc in your new city yet, you should still see your primary care physician and have your labs done.  As A.Z. asked, have you had a biopsy?

Posted 1/14/2013 5:04 PM (GMT 0)
TT, Welcome to the forum.

I agree with Dany. Liver Disease can be horrible and you need to get a handle on what is going on...you need to be seen and tested a few times a year while you hope your liver does not become decompensated (stops working).

With the additional "symptoms" your disease may be progressing even though you have stopped using alcohol.

Let us hear that you have been to your doctor and found a major medical center that has a good hepatology and transplant department....so that you are "in the door" in case a crisis hits.

Best,
Mama Lama from Florida

Post Edited By Moderator (hep93) : 1/14/2013 2:27:05 PM (GMT-7)

Posted 1/14/2013 9:32 PM (GMT 0)
Hi, Tre-Tre, and welcome to the forum! I agree with the others that you first should have labs done. Have you found a primary care doc yet? He could do a liver panel and CBC and refer you to a hepatologist. You will need to have a biopsy to determine if your cirrhosis has gotten worse. It does sound like it may have.

A correct diet is very important to anyone with liver disease: No red meat, lots of fresh or frozen fruits and veggies, and pure water. No alcohol, of course. Do you think alcohol was the root cause of your cirrhosis? I'm assuming you were having episodes of hepatic encephalopathy (HE) if you were prescribed Lactulose. Are you still taking it? Are you taking any other meds? Do not take an iron supplement, not even in a multivitamin.

Do your toes also get cold and numb? Can you see your finger tips going white, then blue, and then red as they warm up? If so, you could have Raynaud's phenomenon, a circulatory disease. I have it myself and so does Dany. I was diagnosed with it long before I was diagnosed with hep C. People without liver disease also have it.

The more you can tell us about your disease, the more we can help you. However, as was mentioned, we are no substitute for a doctor.

Hugs,
Connie
Posted 1/15/2013 1:23 AM (GMT 0)
First I want to thank all of you that took the time write to me. I quit drinking 08/11. When I found out what I had, I gave up. I know it wasn't right, but drinking was the way I knew how not to feel. The doctor didn't say it was from alcohol. I was in a very abusive relationship and started drinking very heavily. I started socially drinking at 27. I was diagnosed when I was 35. I left him in 09/11. Then in 10/11 I found out. I am taking Wellbutrin for depression, norco for pain, and that's it. I have to get my lactulose refilled. The doctor did not do a biopsy on me. I get my blood tested every 2-3 months because of the pain medicaiton. Every time they test it, my levels are normal. I know that sounds weird (it did to me too) but the doctor said I am doing what I am supposed to be doing . The only two symptoms I had before I was diagnosed was the memory loss and brusing easily.

I forgot to tell you I had the gastric bypass in 2003. My body doesn't metabolize the alcohol like a normal person.

I went online today and found some doctors in my area. I am off tomorrow so I can start calling and make an appointment. I am hoping I can find one to go to tomorrow.
Posted 1/15/2013 3:31 AM (GMT 0)
Also, I was wondering if anyone could give me some suggestions on how to deal with knowing slowly I am getting sicker and sicker. I am so..scared.
Posted 1/15/2013 3:44 AM (GMT 0)
TT,

I think reading back a month of posts will be a good exercise for you...to see the good, bad and ugly of this.

Look especilly at A.Ziffle's posts.

He stopped the beast in its tracks and has been doing really well, for a guy who was once really really sick.

It should be motivation to you to take days one at a time and to stay well...eat right, take your meds, stay sober, and get some exercise.

You likely have years on your side.

Best

Carol

Posted 1/15/2013 3:57 AM (GMT 0)
Hey, I've been there, done that with alcohol...so you are not alone in that. Plenty of us abused alcohol or were addicted to it, as well as other drugs.

What confuses me now is a diagnosis of cirrhosis without a biopsy. Did you have a liver MRI or CT?

For information on liver disease, read the info in the folder entitled Hepatitis Resources at the top of the page. Lots of good info in there. You will learn how liver disease progresses. As ML suggested, you can also read the older posts here. Or you can do a specific search. Click on Search in the blue bar above and type in cirrhosis. Everyone is different, though. I had cirrhosis but my liver never decompensated. So I didn't have symptoms except for edema, and fatigue from hep C. Had it not been for liver cancer caused by hep C, I doubt I would have needed a transplant.

When you get lab work, it should include INR, creatinine, and possibly AFP (alpha fetoprotein, a tumor marker), in addition to a liver panel that includes bilirubin.

Please keep us posted on your appts., how you are doing, etc.

Hugs,
Connie

Hugs,
Connie
Posted 1/16/2013 2:57 AM (GMT 0)
 Tre~ , Sickness comes and goes with this disease . I know it's hard to look at your life at this point and see there being anything more than doom and gloom for a future . Throwing in the towel and wallowing in a pool of pity goes through almost everyone's mind when confronted with a potentially deadly disease .

 Accept the things I cannot change . This sentence is part of a serenity prayer for AA groups . It pretty much sums up what must be done to move forward and beyond your fear of the future . Will you die ? Yes . Will you get sick ? Yes . You have to understand that both these yes answers are inevitable for any human no matter how healthy they are . It's not a given that just because you feel sick today it's the end of the road . In fact you may go back to feeling as healthy as a horse for years and one morning walk outside and get hit by a Beer truck , Stone cold dead on the spot . Ironic ? Yes , but nothing at all to do with this disease .

 Hep93 ( Moderator ) said something to the effect that she has to remind herself that this disease doesn't define who she is . I thought about that for awhile and I would encourage you to do the same , Surely isn't as eloquent as something Aristotle might say but pretty deep when you consider her struggles in fighting this disease . 

 A. Ziffle

 

Posted 1/16/2013 5:44 PM (GMT 0)
You're getting some great advice here from people who really know. Something stood out to me "I have to gt my Lactulose refilled". I don't know if it's the same there, but you can get Lactulose here just by asking the pharmacist ... it's one of the ones that's behind the counter but you don't need a prescription.

My hepatologist told me "if you're supposed to be taking lactulose and you don't, you're just chasing your tail".

Anyway, if you were on it, it was for a reason and you should probably still take it until you see your hepatologist.
Posted 1/16/2013 5:49 PM (GMT 0)
I know it's not the main reason for taking it, but lactulose helps me handle the fear - puts things back into perspective. If there's any HE at all, fear can take over.
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