I have all the same stuff, but I'm on my second liver - had a transplant a little over 2 years ago. Now I'm at probably stage 3 fibrosis. I also have a lot of fluid retention in my abdomen, feet, and ankles. I had a 'belly tap' a month ago, and it's building up again.

Extreme tiredness seems to be one of the common complaints of folks with cirrhosis or leading up to cirrhosis. I, for one, wake up tired and go to bed exhausted. I never feel rested but do find it difficult to fall asleep. Sometimes I feel "too tired to sleep" if you can understand that.

I don't stay asleep for more than 2 hours at a stretch and rarely can go back to sleep right away. I am getting to be a "fan" of late night television these days.

Many don't understand what you mean by "really tired".....They can't relate because they live with more normal circumstances and have regular sleep patterns. They don't understand when we as cirrhosis sufferers say that we can't do something or can't go somewhere because we are just too tired. It isn't "tired" like one would experience after working a long day. It is bone tired, barely able to put one foot in front of the other, gotta sit down or will fall down kind of tired.

I am learning how better to just say, "No". It used to really bother me for fear of having people label me as "lazy" (which I have never been) but the longer I live with this cirrhosis, the easier it is getting to be.

Just take one day at a time and do what you can comfortably and let the rest go for another day. Hugs and prayers.......CarolLentz

Thanks for your input, It's nice to know I'm not napping alone. I started feeling this way a couple of months ago, thought it was due to long hours at work but now we are back to regular schedule and it's the same or worse. I haven't had a chance to talk to my Dr about it, working on bile duct issues right now. Did your Dr say there was anything that could be done about it?
Thanks again Gordy

I have, of course, told the doctor about my seemingly excessive exhaustion and he did recommend a senior-complex multiple-vitamin but I have not noticed any difference in the 6 months that I have been on them. I am still gaining weight so fast that it seems I can go to bed at one weight and wake up pounds lighter only to weigh more than I started with at night. Sure it is sodium but don't dare taken any more diuretics than I already do. I take 460 mg. of diuretics a day between the aldactone and the furosomide. Have been taking huge doses for several years now but it doesn't seem to do much but make me thirsty and try to stay close to a bathroom. Thank God that I don't have the side effects from the Lactulose that I have heard about.......That doesn't seem to bother me.

As I have said before, I do a lot of cooking from scratch and never, never use salt. There are times when sodium in foods can't be helped, however, but even then I strive for the low sodium when possible.

I am due to see the doc at Cleveland Clinic again on November 8 so I will run being so tired all the time, past him again. He did say that I should learn how to better pace myself. I have noticed that on days when I do too much (although it seems like precious little), I feel more tired. I am still using my exercise bike daily however, but as far as the weight gain, exercise doesn't seem to matter much.

I didn't have the TIPS procedure but did have a surgery where they stretched the ducts in order to cut down on the gall bladder attacks plus take actigall twice a day. That has worked fine but I am wondering if that would cause the weigh gain I am experiencing. Will ask in November.

I will tell you one thing.......Just about the time you think you have your symptoms under control........something else pops up. Nature of the beast I suppose. Blessings and good luck........CarolLentz

Hi Gordy:

Ah, the sleepiness! I get so tired that I cry sometimes. My doctor had told me to liken my disease to something like diabetes and to "learn to live with it". At the time, I was pretty ticked off, as it seemed an insensitive thing to say.
But I thought about it..."learn to live with it". It is pretty hard to do with a 10 month old and 10 year old but I have come up with some ideas. I have NEVER been a morning person. I mean NEVER. Lately, it does seem that I have the most energy between 530A-2P. This is totally new for me. So, I decided to make the best of it.
I can get up before the kids, make lunches, and do a little house cleaning. Also, this insures me to have at least one cup of coffee, undisturbed, which is very important to me.
My focus has been off so this helps me to do one thing at a time which lessens frustration. Also, I am able to take an early afternoon nap and get dinner cooked by 3. By the time 4P rolls around, I'm done for the day, physically speaking. However, there's not much left for me to do and my reinforcement comes home at about 6. Then I pass out by 8 (yes 8PM) and sleep like a rock.
My best advice is to find your sleepy triggers and see if there is a time of day that you are most wakeful and try to plan things (like driving) around that.
Most importantly, BE SAFE. If you feel the sleepy spell coming, pull over and get some rest.

Thanks again for advice and input. I did notice that 4 PM must be the time I'm done. Yesterday was feeling pretty good, getting stuff done, went to the library and about 4 it was like somebody tapped me on the shoulder and said "times up". Had to sit down and rest before going home. Will have to adjust and make plans accordingly.. Try to live with it and around it.

Thanks again
Gordy

I read somewhere that livers kind of have their own circadian rhythm. Maybe 4PM is like liver nap time...

That makes as much sense as what the Drs tell you sometimes

Oh doctors...I won't even get started on THAT, lol!

Hello everyone! I see a couple of my friends on the HepC forum here (you, Marilyn, for one), and now... so am I. I am Stage 3/4, Gen. 1a, CT. Early cirrhosis, treatment naive. Actually, I'm afraid to treat, to be honest. I'm 65 - have always been very emotional, and I know Interferon can really "wig" you out that way. I know tx has to be a lot harder for someone my age than for "younger" folks (but Marilyn, again, dear Marilyn, she's a bit older than I but is going for it at the beginning of the year). My HCV virus became very aggressive the past couple of years, so - really, do I have time to wait for the all orals? I don't think so. I wanted to believe I had that time - but realistically, that would be pushing things since we really don't know when they will come out. Not really. I wish I had treated when I was first dx'ed in 2002 - Grade ZERO. But I didn't, and now here I am 10 years later with early cirrhosis. What scares me most is that tx can cause the liver to go into ESLD. It's rare - my doctor says 1 in 1,000 (and two doctors have told me this). Do I take that risk? Well, for sure if I don't treat this virus is going to put me there anyway eventually. This is SO hard. This disease and the decisions we have to make are SO hard.

I am SO glad to have found this thread because for the past month I have had so much fatigue - so much. Like people have written, I wake up tired, go to bed tired, and sleep during the day. I never feel rested. Some days I feel okay - then I go to town to shop and come home exhausted. It's gotten me SO down, so depressed, so worried - like, does this mean I'm getting worse?

I too cry sometimes about this - people don't get it - it's not the same thing as normal "tired" - it's the feeling that you are completely wiped out, and it's a different level even of that - yes, bone tired, that's what it is. I cry because I'm so very fatigued, and I cry because I'm worried. So now I'm on anti-depressants to maybe help with that a bit. I feel so hopeless sometimes.

But I know I'm not alone. If this is part of cirrhosis, which yes, it is, I guess I have to learn to accept it - what choice do I have? I need to cut WAY down on sugar, I'm reading that. I have lived on sugar all my life. I take D3 but maybe not enough (1,000 mg/day). Take a B100 - can't take anything with iron so I have to watch the supplements. I don't know what else to do, but this is just so difficult for me. I was once a ball of fire - once upon a time.

Anyway, you'll be seeing more of me. I DO have early cirrhosis, and I'm glad I came here today looking for threads about this godawful fatigue. I was just at the neighbors' for T/giving dinner and had to leave - hit me like a ton of bricks. So ...... this is normal for us?

I have to chime in about the tiredness. Today, being Thanksgiving, was very trying for me. I cooked most of the meal and took it over to my son's house for extended family get-together (my condo is just too small to host many for holiday meals). I cooked all day yesterday and again this morning until 2:00. By about 11:00 this morning I was so fatigued that I could hardly put one foot in front of the other. (I have muscular dystrophy, 22 years now which makes it difficult to begin with, without the liver disease). Anyway, I thought about all of my friends on this forum and how they all must be doing today.

The fatigue is the worst but, ya know, I have found that by pacing myself and not doing more than I know I can and then quitting when I start feeling tired is the best course of action. Vitamins help a bit but by accepting my current health status and being determined in taking the best care of myself that I can, helps even more. I will promise myself that from her on out, I won't volunteer quite as easily for doing the big family meals. I have always loved cooking (hillbilly, down home, stick to your ribs and anything else that gets in the way, food from my childhood) and did it all single handedly for so many years. Now, I will have to just slow it way down I am afraid.

I will be 64 next month so I think you, Marilyn and I are very close in age and now, circumstance. I was diagnosed over 9 years ago with ESLD (cirrhosis) but still keep on ticking with a MELD of only 10. At first, I thought about just giving up. Thought that I would have to being that far advanced and all. They said my liver was over 65% nonfunctioning at that time. I found out that it doesn't have to mean "the end" but with a little revamping style and activities, I do ok and hope to for many years to come.

My faith in God keeps me going. When I feel like I can't go on and when I have those "feeling sorry for myself days", I remember how Jesus suffered and died for me. Somehow, that helps me to pick myself up and go on. I recommend it highly. Faith is a wonderful thing. It's never too late.

I do wish you well and will add you to my ever-growing prayer request list at church. Praying for others seems to help me as well.
Take care of yourself, pace yourself, eat right, exercise as you can and keep up with regular doctor visits and testing to catch anything that creeps up, and you will be ok.........Hugs and prayers.........CarolLentz

Thank you, Carol! You have given me another "nudge" about faith - developing it now - it's never too late. I would guess that at least three people in the past three days have alluded to this with me. And it's what I am going to do - already have - turned to my Higher Power because - I can't do this one alone, and I know it. My given name is Christine - follower of Christ - and I'm coming home. I also know the Power of Prayer. I've seen it happen, borne witness to it, many many times. Praying for others is one of the "secrets", I think - we help ourselves by helping them - or just doing for others. This illness has changed my entire being - and the spiritual aspect of it is beginning to radiate now.

Could you explain a bit about MELD scores when you are up to it? What exactly is it, and how is it determined?

Is your cirrhosis from HCV (forgive me; I don't know your story)? Did you ever treat?

Again, God bless you - thank you.

Ohhh - well, I just found this, so I know what the acronym stands for ~~~~~~~~

Model for End-Stage Liver Disease, or MELD

Cat, please don't buy into the "higher power" mindclap. It's a term that the athiestic world came up with - originally a term that AA used to make AA (which is at its core the Gospel message) palatable to non-believers. It no doubt it saved and prolonged lives here on earth - but like other half-truths it also consigned more than a few souls to hell. Jesus is Lord - end of story. Anyone who doubts this needs only to read and study the Bible, a supernatural collection of writings that stands stronger today than ever - after thousands of years of assault and attack. Our creator God gifted us with free moral agency, however - so each of us has the option of accepting or rejecting the love, grace and eternal hope that are offered to us. Tragically most folks are too wrapped up in the goals, pleasures and distractions of this world to ever give such things much serious consideration.

Great post, PD. Thank you. Indeed, that "Higher Power" term came from my own time spent in AA decades ago when I couldn't grasp the concept of God... "Step 3. Made a decision to turn our will and our lives over to the care of God as we understood Him." That last part, "as we understood him," allowed me to open up to the rest of the steps - somewhat. I don't really want to get into my AA experience - when I quit drinking, I called on GOD to help me. And I've been sober for 24 years.

I will think carefully about what you wrote.

All I know is I need GOD's help now.