what constitutes 'liver failure', and/or what are the symptoms that you would watch for. i'm in stage 4 of my cirrhosis and don't qualify for a transplant till my liver actually fails so was wondering what to expect. hopefully someone can help. thx.
I am end stage liver disease. If the damage to the liver is not stopped, the liver gradually loses its ability to carry out its normal functions. This is called liver failure, sometimes referred to as end-stage liver disease. At stage 4 you are a stage before end stage.
My symptoms are acites (ascites) (fluid retention in abdominal area), edema (fluid rention in legs), protal hypertention of the esophagus level 2.( (bleeding of the esophagus varieies) I have lost a lot of muslce and very week due to the liver not producing albium and not processing protien right.
Other sypmptons are kidney failure, Hepatic encephalopathy (confusion), Gastrointestinal bleeding: Portal hypertension causes backing up of blood flow in the veins of the stomach and esophagus.
Once on the liver transplant list they go mostly by the MELD test where you may be in line for a liver transplant. It still confuses me how it works number wise.
I hope this is helpful. If you have anymore questions I will do my best to answer what I can.
Number wise the qualifying number seems to vary in different areas. I am at end stage,and have been placed on the list with a MELD score or 10. The higher the number the higher up on the list you go depending on your symptoms. Right now I am hopefully still at a 10. Symptoms are not always the same for everyone. So far I have encepalopaty, (so I take Lactulose), some fluid retention (Spiranolactone) , fatigue, body aches,and insomnia. .
I would like to add when you have liver failure and at end stage liver disease your liver is decomposed. That means the liver will not repair itself or stop from the damage continueing. A composed liver you have a chance of the liver repairing itself some of maybe stopping the progress of the damage.
I am in Stage 3 liver disease and feel like killing myself. What is the use of living if life is 24/7 exhaustion, losing your muscles, no quality of life. I have not yeat gone for the liver biopsy my doctor has been pushing on me since November. Any advice or words? I have five grown children and eight grandchildren, but I don't ant a "long, lingering death". I haven't even told my husband yet that I am in Stage 3 liver disease because I don't want to upset him about something he can do nothing about. I just don't know what to do. I have a lot of reasons to live, but my idea of a "good" death is as quick and painless as possible. Please if you have any advice or suggestions, I'm open to hearing them.
I am so tired all the time that even the most mundane chores like getting up and getting dressed are major cycles. I get confused easily and will start something then forget what I was doing or talk and then forget what I was saying. I can't sleep. I have numbing and tingling in my limbs. I am depressed 24/7 yet for the sake of my family I try to mask or hide it. I have no health insurance, I am not on medicare because I'm not quite old enough yet.
I want you to know there is hope! I was diagnosed with End Stage Liver Disease exactly one year ago, had all the bad side effects (ascites, varix, portal hypertension, etc.) and was knocking at heaven's door. Everyone thought I would need a liver transplant or die. Guess what? I followed the doctor's orders, stopped drinking 100%, did the low sodium diet and all that, and I've never felt better! I don't even need a transplant anymore. The liver is an amazing organ and, if given the chance, wants to heal and work for you.
I seriously looked like death one year ago and now, today, I'm wondering if I should play tennis or go hiking tomorrow.
Please get medical help as there is serious hope! You can buy your own health insurance policy even online if you have to.
Nicole, you say you followed everything the doctor told you, did the low sodium diet & 'all that'...what does the 'all that' mean? I'm looking for anything/everything I can do to get feeling better. I'm watchful about salt intake, i don't drink at all (& hardly ever did more than a glass of red wine the odd time), I try to eat well, but is there a specific 'diet' I should be following. I am stage 4 cirrhosis & fight the fatigue daily adding a higher level of depression, but refuse to 'give in' in this battle. I have an 11 yr old here (foster child) & she makes me want to get up & keep going. I'm having constant back pain with aching legs but unsure if this is related to my condition. Thanks for your words of encouragement though. It's greatly appreciated.
OK, well, at the very beginning, the docs at the hospital were 'trying' to get me on the right combination of pills (they weren't too terribly off), but it took my hepatologist and my general practioner (who also happens to be a GI specialst - hand picked by me because of this - would hightly recommend doing something similar) to care enough to see me pretty much every other week for the first few months. Between the two of them and me being seriously determined, I eventually got the right combo of meds to ease every one of my symptoms. Their main focus at the beginning was to get rid of the ascites (I really looked pregnant), so lasix and spironolactone dosages were raised until they were seeing results. I was put on a 1.5g or less sodium diet and was to drink less than 48 oz of liquid per day. I quit smoking and obviously drinking. I seriously kept a journal and wrote down every single thing I ate and drank in a day for 5 whole months. Each page I would also write my temperature, how I was feeling and the measurement of my stomach by one of those soft measuring tapes.
One reason they were concerned with the ascites was because the added weight/volume puts a lot of pressure on, well, everything else. In my case it caused portal hypertension and eventually (3 months after 1st diagnoses) one varix. This later episode was not me getting worse, just the disease rearing its ugly head. I also started taking enulose at this time because I had my first and only encephalopathy episode the 2nd hospital visit. It also made my extra 'regular' like 4 times a day which is what they wanted.
So, at this point, I'm on lasix, spironolactone, nadolol, enulose, Prilosec and Centrum Silver (Multi-vitamin).
I had no more episodes with my liver after that and I continued to see my doctors about once a month. They do an upper endoscopy or an MRI on me about every 6 months to check for cancer and any progression of the liver disease. There has been 0 progression of any more cirrhosis and so far so good with the cancer. That's the absolute best I can hope for.. (other than the liver growing healthy nodules which may happen someday!)
Since I had apparently a pretty textbook case of alcoholic hepatitis, I also seemed to have a textbook treatment if you have the right doctors who know what they're doing. But I'm also young (35) and was told my other organs are in good shape.
Last time I saw my doctor, he said, "Should we do 3 or 6 months?" and doesn't seemed worried about my health at all (in a good way). I was very prepared to be on the transplant list and, at this point in time, my MELD would only be like an 8-9 (was about 20 in Jan 2008) and it's just not needed at this point. Also, let me point out that there's no zeros out there. Most healthy people have around a 5.
A weird thing... I actually just got my period back for the first time in 15 months. My hepologist *just* told me "I bet it'll just show up within 6 months or so" and what do ya know. If that isn't a sign of getting back to healthy, I don't know what is.
Let me know how you're doing! If there's anything I said you want to know more about, let me know. I here for you!
thanks for your reply & congrats on how you're doing. That's so nice to hear about. I'm so new at all of this so there's lots I don't understand. I have (supposedly) a really good liver specialist but after his prognosis, the only thing he said was to live a 'good life', which wasn't really much help where info is concerned. He never even mentioned MELD scores. Can I then assume my #'s not very high or he would've mentioned it???
There is something maybe you could explain for me. It's when you say...
'In my case it caused portal hypertension and eventually (3 months after 1st diagnoses) one varix. This later episode was not me getting worse, just the disease rearing its ugly head. I also started taking enulose at this time because I had my first and only encephalopathy episode the 2nd hospital visit. It also made my extra 'regular' like 4 times a day which is what they wanted.' Thx.
It has been around a year and I had my symptoms plus the muscle loss. I haven't lost more in a serveral months. Eating right and keeping your sodium down do make a difference. I went from 3 yrs. to 1 yr. to live at first to to staying steady with my labs. Get the biopsy if the doctor says there is no reason not to. I am to seroius to have one done and it won't tell me more. Good luck to you and your family. Your in my prayers.
Let's see... the portal hypertension caused by my cirrhosis (ie your organs have to work harder to transport blood to one another when there is scar tissue to work around) eventually caused a varix (a swollen vein that finally 'popped' in my stomach). It caused severe, massive internal bleeding. I was throwing up blood once an hour for like 6 hours before it was morning and the doctors said to go the ER NOW! It looked like there was a murder in my house. By the time I got to the ER, I had gone so long I barely made it to the front desk. I was put in ICU for 3 days (put asleep, too) and got 8 bags of blood transfused. The offending varix was tied closed by a rubber band type device.
By the time I was alert, I was really loopy still though not even remembering the year. Supposedly, this was my first and only episode of encephalopathy where ammonia builds up in your brain when your bowels have backed up. After ICU, the only thing left in me was bones and IV fluid, so I was getting better right away. They let me leave the hospital when I could finally show them a bowel movement at least 3-4 times a day to ensure nothing would back up again to cause another encephalopathy episode (Enulose is like Mega Laxative)
After that, I was on the train to liver transplant patient town and was all over the MELD score stuff, but I just kept getting better and better. My doctor only told me my score because I asked after being so anxious about everything.
I was so freaked out by this whole ordeal and I really thought the varix just had to be a sign of me just going downhill slowly but surely. I did so much research, everyone around me had a liver lesson. My doc assured me though that I hadn't gotten worse. It was just a side effect of what I have and we'll try to control it. I *think* this is what my Nadolol is for and also Prilosec OTC.
So, that was March 08 and I kept seeing my specialist and my regular doc (a GI specialist) probably once every couple weeks mostly for blood work. I had another Endoscopy in outpatient to see how the band was holding up and a scan to check for progression of the cirrhosis and then another biopsy and then another endoscopy.
I had a related malady that was fixed by yet another endoscopy and found by the scan. A cyst I apparently already had on my pancreas had ballooned up, so they just went in to drain it. Pretty simple and amazing what they can do now. This was this last October. I have another scan in March to check the cyst and liver.
Good golly, if that didn't put you to sleep, let me know how you're doing. Yes, I think your doctor wouldn't have mentioned a MELD score to you because it's not a part of your 'picture' at this point. Also, I've found that they really won't bother explaining stuff to you unless you ask. I don't know if they think it's too complicated, boring or we don't care, but they love to explain it when you do ask! Also, there's an easy way to figure out your MELD score. Just google "MELD score calculator" and you'll pull up exactly what the doctors use. You just need 3 values: Bilirubin, Albumin an INR. It's kind of interesting, actually.
Hi Nicole, wow, what a story. I'm so glad you survived all of this & are so well now.
I have an appointment at the end of this month with my liver specialist so we'll see how things are doing then. I had a flu shot last December, yet have had the flu at least twice now. I get so ill each time too. I ended up in hospital right before Christmas with dehydration. The emerg were appalled at my blood work but I assured them it was 'normal' for me. They kept me overnight pouring lots of saline into me, then released me. Since then, I've been really sick now twice more with 'flu' like symtoms (symptoms)...terrible stomach cramps, diarrhea, nausea. Wondering if this is part of the liver problem but will ask the doc when I go at month end. I find I can't work outside the home anymore...too tired all the time. Do you work still? My friend wants me to houseclean once every 2 weeks for a few hours but my family don't want me to, because I'm already too tired out. It is heavy work scrubbing, moving furniture to vaccum, etc. I'm finding keeping my own home clean is lots, Do you have any opinions on this? Please let me know.
I'm in Canada & it's snowing light, fluffy little snowflakes here today that are so pretty. Tomorrow we're entering a deepfreeze...-30 degrees with the windchill. Brrrr! Do you live in Canada or the US? How's your weather?
I have an 11 yr old foster girl that lives with me. She loves the snow but dislikes the cold. we're good for each other....I stay positive primarily for her, even though some days I feel like ****, & she has a bit of an eating disorder, so while I like to eat well & healthily, it helps keep her on track with her weight. If you do nothing else to help yourself, you have to keep your chin up & keep reaching for the stars. I hear this in your words & it's great for others to hear it too. It would be so easy to just give up & give in eh?
Well, I won't take up any more of your time. Stay well, take care. Bye for now. I pray for us all every night.
Hey, I'm glad to hear from you again! I'm in Oregon and we had quite a bit of snow over Christmas which is unusual but now it's back to normal. I have a 6 year old son who just loved it. The eating 'whole and fresh' food thing works on so many levels, I'm glad you're able to help your daughter at the same time as trying to function yourself. I am not working and haven't been for a couple years. I am getting disability actually (like social security payment) from the government so it's nice that way. My husband works full time and my son is in kindergarten, so I get a little break from everyone during the day. I used to nap a lot (then I got insomnia, too), but I've found that it got a lot better, especially since I have a schedule of things to do each day. Yeah, no one in my family wants me or really expects me to work. In fact, they're stoked I'm painting all the time now. They are all so grateful and amazed I'm doing so well I think they don't want to push it. My folks and all my husband's family were willing to move in on a moment's notice to take care of me. Maybe it was subconscious healing on my part... the thought of my mom-in-law moving in! Just kidding! I would not even think about taking an outside job right now. Take it simple. After all, you're in Canada! The home of Rush and hockey.
Your symptoms sound not fun at all. It probably took me about 4 months or so after 1st diagnosis to finally get the crampy/achy stuff controlled (turned out it was what it felt like - blocked bile ducts) and then just in the last few months, my doctor told me I could toy with the water pills and the enulose and see if I needed them at all anymore. I take about 1/2 the dosage of the water pills and hardly any enulose at all anymore. I have solid bowel movements which makes my doctors very happy. That seems to be a very simple sign my liver is functioning much better.
Your general discomfort may just have to wait til you see your doctor, but any fever over 101 is cause for immediate attention. The nausea is a question mark... I had nausea from my pancreatic cyst and whatever it was pushing down on made me kinda sick.
Word to the wise, though... if you see any blood at all, from throwing up or going to the bathroom, go the ER. Do not hesitate.
So, write me back, eh? (You Canadians crack me up!) I think you should have someone help you out with your daughter for a while. It'll take a lot of pressure off to have a day to rest at least once a week. My mom would take Max (my son) for afternoons a couple times each week and even have him overnight once a week in the beginning and my husband did nearly everything else.
Quick question, why did you say at the very top of this page that you wouldn't qualify for a transplant until it actually failed? That sure doesn't sound right to me! Who is the dipwad who said this? Also, are you on any meds yet?
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