Stage 4 cirrhosis

I was diagnosed in March with stage 4. The only symptoms I have are fatigue and stomach cramps. If I got to stage 4 without knowing I have a problem will I die without further symptoms? My father was diagnosed with gallstones and died 8 weeks later from cirrhosis, so that's scary for me.

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Kathyte,

I was diagnosed with Cirhossis in 1990. I was pretty stable until 2008 when I developed hepatic encephalothopy. I am currently on the UNOS waiting list for a liver.

Do you see a GI or hep doctor? Have you had a biopsy? Are yor doctors recommending transplant?

Fatigue is a universal symptom of liver disease. That is why when people get diagnosed they already have developed cirrhosis.

You should get your stomach cramping checked out. It could be caused by many things.

Welcome To ALF support group.

Susie

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Thanks, Susie. Yes, I've had a biopsy. Dr. says I'm not ready for a transplant at this point, guess I have to be sicker. What stage were you when you were diagnosed?

Appreciate your reply.

Kathy

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They did not give me a stage when I was diagnosed. They said I had some Cirrhossis. In 2004' I developed edema in my ankles and feet and in 2008, the ESLD and HE. When I developed the HE, my hep transferred me to transplant for evaluation. My meld is currently 16, too low for transplant, but bad enough that they monitor me closely.

My cirrhosis is due to giant cell hepatitis, which is a very rare liver disease. Doctors do not know what causes it. I take prednisone to try to keep it in check. I have had it most of my life apparently, but it was mild so I did not show signs until recently . I just turned 50.

Susie

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Welcome to the ALF support group Kathy. Hopefully you won't die from this decease at all. At our age, I'm 60, and the same diagnosis, Sept. 2010, It is possible to live a close to normal life span, even without a transplant. That's what the doctors tell me anyway. I'm still watching symptoms show up, every now and then I notice something new, for example my nails are starting to change color. Nothing major yet except the enlarged Liver and Spleen. The Liver is shrinking now so it's back to normal size. I don't know if that's good or not, I have a GI appointment in about a month.

I know this can all be pretty scary, but there are some complications of this decease that you'll need to know about in advance,so you have to read a lot and get informed, and you really have to be an advocate for yourself.

Just this past week I had a minor infection, so the Doc. ,not my regular because he is on vacation, gave me an anti biotic and a pain reliever, the pain reliever says on the box that the side effects can be stomach ulcers and other bleeding problems.
This doctor was looking at my chart and it tells him that I already have trouble with stomach ulcers and other bleeding problems, I didn't even buy the pain reliever. I'm just saying that you have to keep an eye on the doctors.

There is a lot to learn and this decease will change your life, and you have to work hard to make a new life, but you can live a long time even at stage 4. Heck that doesn't even mean that you'll need a transplant this decade. It's different for each patient, some are fast most are slow.

There is a bunch of terms that you'll have to learn, like your meld score. I think the most important one is Compensated Cirrhosis, this means that you have Cirrhosis and that your Liver is not doing it's job so well, but your spleen and kidneys are pulling the slack, so you're kind of sort of doing ok. Of course Decompensated Cirrhosis, and I'm pretty sure you don't have this as yet since you say haven't had major symptoms, is when the other organs are no longer able to compensate for what the Liver is not doing.

I hope this helps some, sorry you're on this road, hope you are on the Lord Jesus Christ's road.

Paul

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Wow, thanks for your great reply. The GI told me I've most likely had cirrhosis for a very long time and that mine is not alcohol-related. He said 15 - 20% of cirrhosis sufferers cannot point to a specific cause for the disease. You are correct, there is a lot to learn. That's why I wrote to ALF for direction - there is so much information on the net, but no way to determine what's accurate and true.

Your message has given me hope and some direction. I'm very grateful for that.

My best to you,

Kathy

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Kathy, I had 4th stage cirrhosis and was living a full life of exercise , work etc. It was lump on my stomach that brought the situation to this surface. I had 2nd degree cancer too. No symptoms! Point being, you can survive and live normally, your hope level should be higher now because you are being monitored. Stay aware and live your life.!

F.R.O.G. Forever Rely On God and trust that all are doing their best to care for you. Eat healthy too!

Welcome to this site!

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I know when the doctors come in and tell you that you have cirrhosis first thing you think of is I am going to die and I have had some days I. Actually thought I was but seeing this sight has helped me understand a lot of things the doctors don't take time to explain to you I have had 2 people in my life that has died from this disease but with both of them they didn't know they had it till it was too late so we are blessed and the doctors found where we can be monitored and can do things in our life that can help us live longer God took care of us with finding it so he will be there the rest of the way because nothing is over till God says it is over I have gotten where I can't work and God has provided for me so I know he will always be there for all of us you will have good days and you will have bad days but on your good days you will appreciate them so much more than you did before .I hope you have a lot of good days and God Bless you

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I am so happy that we can communicate on this site!

















I am so pleased to have found a community of fellowship on this site! This is truly a God given opportunity to share and understand.

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Hi Kathy and welcome, welcome. I see you have already gotten some excellent answers from everyone!! I also have stage 4 cirrhosis, but I am compensated so far. Lots of doc appointments ect--lol. Right now I'm dealing with a complication of cirrhosis---Portal hypertension and varices. I live life day by day--sometimes you feel good and sometimes you don't. I can accomplish just about any project if I do it in small increments!! First thing my doc told me was 'it's NOT a death sentence" Guess I am rambling here, ha ha! Any way, this is a great place for support and info, so ask anything you want--someone will answer. Hope to see you around the board!! take care--Jean

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Thank you, Jean. I'm sorry for your recent issues. And you are not rambling! Best of luck to you. And, like you said ... One day at a time. Kathy

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hello to all,
i was diagnosed in august 2010 with cirrhosis from nash when my gbladder was removed.. my biopsy was done same day..i am stage 4 ..meld score of 8 & my liver is compensating.. went to my hep on march 28, 2012 and was told the same thing most of you are told..not a death sentence.. but..life style changes in diet and exercise does matter..my doc wants me to lose weight...it is very SCARY for a doctor to walk out of a gb surgery and tell your husband that u have cirrhosis & you need to see a hepotologist..things can change over night..all we can do is hope for the best..i am here for anyone that needs me...

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I have no idea what my meld score is, have to ask my GI. Thanks for your comments, my best thoughts and wishes are with you.

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Hi, I also have NASH. They were pretty sure I had it but it was diagnosed for sure when I also had my gallbladder taken out and had a biopsy done at that time. I have cirrhosis, diabetes, and Encephalopathy. I would love to know more about the stages. I have been pretty sick lately. Had some pretty bad bouts of HE. I look forward to learning more about NASH and cirrhosis. I hope you both have a doing well and look forward to hearing more.

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So I contacted the dr. Today to ask for my MELD score. I need more blood tests to make the determination. My husband is telling me I'm crazy to seek information the doc hasn't offered. I would really appreciate your opinions on whether I should get the tests done or not.
Kathy

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hey kathyte..this my opinion..if your dr diagnosed you at stage 4, it only makes sense to know your MELD score.. not sure why he didn't tell you to begin with.. that will let you know how healthy you are.. liver functions..the MELD score is how the dr determines your end stage cirrhosis for a transplant..up until i got mine i was a basket case..good or bad..high or low you DESERVE to know...

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It important to know especially in your area. I was in Boston for a year and they told me I would have to be over 30 for a shot at a transplant. I moved south in order to get mine asap. I have already lost 3 years of my life and I just want to get on with it.

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Thanks, Trumps and Mowaid. It makes sense to me to know my MELD score also. I've been wondering why the doctor didn't have the information available. He is supposed to be the best specialist in my area, but the lack of the score is making me question that.

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My Gi did the liver biopsy and told me I had cirrhosis over the phone and set me up with the transplant doctor and he told me my meld score but he didn't tell me what a meld score was but I found out from this site have they made you an appointment with a transplant doctor I have to see him every 6months I also have the varices have they said anything about you playlet count being low

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http://www.mayoclinic.org/meld/mayomodel6.html

That will calculate your meld if you have you blood test results

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Unfortunately I don't have any of the blood test results. I've looked at the Mayo calculator, but without the tests it's not possible to decipher. My dr. also told me I have stage 4 over the phone, but, when I questioned him, told me I am not yet a candidate for transplant. He didn't explain what he based the comment on. I should find out about MELD next week, though - kind of nervous about it, but it's important to know. Everyone on this post knows so much more about the disease than I do ... I need to get up to speed.

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