Liver Failure and cirrhosis death, anyone go through this?

[Mary Z]

If you have lost a friend or close relative to liver failure and cirhosis, please share with me the amount of time they had in "end stage". We are trying to get some idea of what to expect....I have posted on the liver forum...but decided to ask here as well. Thank you all for your time!
Mary Z

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[Vans10]

Hello, my dad been suffering from liver cirrhosis for 1 1/2 years now, he never drinks or anything they say it's a mystery but I think it was due to medication they were not checking his liver while on it, anyway He been through allot before with heart surgery and now it just got worse. To my perspective I believe it all depends on what situation the person is in many people body can give in faster than others. Just pray and hope for the better. My father was walking, eating like everyone else in October two months later now it's December he's bed bound not able to walk,talk,eat or function like everyone else can I can only give him juice little by little and he's in end stage only thing left is to pray for him to not suffer and hope he had a happy life. To answer your question when a person comes to end they will just want to sleep, have yellow to skin and eyes, diarrhea or not responsive that basically the end stage just Comfort your love one and talk to them even if they can't talk remember they can still hear you and know you where their to love them...

[AdultOrphanArlo]

My mother had stage 4 cirrhosis for quite a few years. She had liver disease [non alcohol related] since before I was born. It wasn't until I had just turned 24 that things turned so severe. They also thought she might have had liver cancer but we were unable to get tests for it in time to see if it was cancerous. It wasn't until she had the complication of Hepatic Encephalopathy that things really went down hill. Most only have about a year after being diagnosed with HE. She had to take Lactulose for this. Because the liver is a giant filter, when it fails your body cannot filter the toxins anymore and it builds up as ammonia. Lactulose was used to try and bind the ammonia  and flush it out through the bowels. My mother was diagnosed and passed the same year. My mother never reached the complete failure of her liver as the ammonia poisoned her enough to cause multi organ failure. We had to deal with episodes of puking and dry heaving, lethargy, little to no appetite, hallucinations and delusions in the last two to three months before her passing [due to ammonia build up], and many hospital trips...

[Lowikins]

My husband denied he had cirrhosis every time his bloodwork came back - no symptoms.  Well, not exactly.  He called it spontaneous vomiting, and for almost two years, I stressed over him throwing up before golf, on summer trips in the parking lot then racing into the motel bathroom to throw up some more.  And then in the car...pull over or are you OK?   First realization of end-stage?  Violent vomiting of blood.  Then a parade of doctors, emergency rooms, Lasix, banding of varices, paracentesis, spontaneous bacterial peritonitis, hope, hope, hope, no hope.  The hospital, mind gone after going for quite a while, hospice, gone.  That's two years of our lives in a nutshell.  I could give you a LOT more detail.  I love him so dearly, and I care so much about what you are going through.  Thank goodness, everyone's different.

[Hlihl365]

My mom is currently bedridden, she has end stage liver failure. I wanted to put a feeding tube in her, but if I did I wouldn’t have hospice. Doc said take her home make her comfortable. He gave her 6 months are less. She barely eats just a few bits. And just sips on something to drink. She fell in the hospital and messed her hip up so she can’t walk anymore. She stays confused, she talks out of her head. She sees people and children that are not there. Her sugar is fine, her heart rate and blood pressure are fine. Her urine is a very dark brown. Hospice says she has a month. But, I think she will last longer. She’s lost so much weight.
She has server psoriasis and also lupus, that is what caused the liver to fail.. along with fatty liver .... I hate losing my mom she is only 62, but she looks way older... I feel helpless, like if there is more I could have done to try and save her.  Docs said Liver transplant is almost no chance... by the time she got on the list if approved she would be gone.

[Talkybox]

Your story is similar to mine. 5 days after my entry, my Mom passed peacefully in her sleep.  It was a tough week, but in the end she went peacefully just as she wanted.  I miss her so much. I have moments where I break down and cry, then I'm okay again. I know she's with God and I can almost hear her tell me "I am so happy".

I would not want her to suffer just so I could have her with me.

[Talkybox]

This thread has helped me so much. I've referred back to it time and time again. My Mom is passing from cirhossis.  

My Mom was diagnosed with cirhossis a few years ago (today 2-19-18),and since then she has had symptoms like forgetfulness, confusion, occasional upset stomach/nausea.

Last Feb-2017, she had a CT and endoscopy which showed no varacies and she didnt have acities. In June she had a fall, and she started to decline since then; sleepiness, forgetfulness,falls. We had a home nurse come in and check on her once a week.

In Sept, her home nurse noticed swelling and sent us to the ER. She had fluid taken 2x, and was sent home after a few days.

In November 2017, a CT showed large varacies and she started to accumulate fluid.

Her primary doc kept referring her out so I switched her doctor to mine. At the first visit, he recomended hospice.  We were shocked.

At the start of December she was on hospice and would wobble around using a walker, still having falls. Her appetite decreased and she became more and more confused.  She started taking lactulose every day, and although it would remove the toxins, she still had confusion.

The entire month of January was like a roller coaster. I would take her out on good days, allow her to eat what she wanted within reason (no sodium) then the start of Feburary we noticed the decline started again.

She had good days then suddenly she started to vomit after every time she would eat and wouldn't make it to the bathroom in time. Hospice prescribed compizine, haldol and morphine and it did help. One day we were able to get ahead of the nausea and she kept her food down. Small victories.

Early Saturday morning she woke up, wandered into the kitchen in the dark and fell in front of the fridge.  She was so confused.

Last night we prayed over and for her and she woke up long enough to say "Tell her(my sister) it's going to be okay". Then she asked "When are they coming to get me?" Followed by "It s almost time." It was shocking because she hadn't spoken or made sense in at least a week.

Sunday morning she had an accident and after cleaning her up, getting her into bed, she started to get restless. I called hospice, they sent a nurse and she said it was terminal restlessness. I asked her if she was hungry, she was a little hungry but didn't want to eat. She took 3 sips of water and didn't eat anything. Her body temperature was high. Not feverish, but warmer to touch. Usually her hands are cold. The nurse said it's part of dying; the body can't regulate it's temperature.

Today a nurse came by and drained 400CCs of fluid. We've been rotating haldol, ativan and morphine.

Her breathing has become labored. She will breathe in, exhale and wait 7 to 18 seconds to draw breath again.

She's sedated and comfortable. Some people die right away and some take their time.

This certainly has been a learning experience. I happened upon this thread to get answers as to what to expect; everyone's journey is different.

It's been trying, but also beautiful. Not beautiful to see someone suffering, but beautiful because soon we will be in the presence of angels. She will be restored in Heaven and with God.

My only advice is to keep your loved one comfortable.  Tell them you love them.  Play soft music, rub lotion on their feet and hands. Talk to them as they can hear everything. It's not easy, but there is God's glory in this.

[Japple1]

So sorry for your loss.  My mom passed 4 days ago.  Same exact way you described.  My sister’s and I, held her hand as she took her final breaths. Mother’s Day will never be the same, but she is no longer suffering.  

[Talkybox]

Thank you. I send my prayers and hugs to you. Today (Mother's Day) was difficult. I'm glad I can start over tomorrow.

[MarAbigail]

Well Mary, my brother was given the prognosis of only a few weeks after getting looked at after his liver enlarged so much he looked like his gut was just really fat-that's how big his liver had gotten. It literally doubled in size. He had been having issues for a few yrs, but never went to the doctor till it was too late; by then his kidneys shut down following his liver, then we pulled the plug, and he was gone. 47 yrs old is just too young to go. He left us last year and the memories of his military funeral still stick in my mind whenever i hear Taps. He's in a better place. It's ok now.

[Amyxxx]

My dad passed away 17th July 2017 he was a alcoholic with hepatitis c he was diagnosed in 2014 with liver failure they offered him treatment with a transplant but my dad made the choice to receive no treatment only a drain to remove fluid from his stomach he had that once few months after being diagnosed, they wanted him to take medication if he was not going to have the treatment but yet again he refused, he carried on drinking 8-10 cans a day of strong larger he ate at most couple fish cakes a week he went on like that until the 11th July he was admitted into hospital he had varicose veins in his stomach and wind pipe and these had ruptured he was at home for 2 weeks prior admission bleeding from his back passage and stayed quite about it, it was not until his partner found him unconscious on the floor at this point he was vominting blood so they rushed him into a&e he had 3 pints of blood given to him and taken into surgery to repair the veins they managed to stop the bleed but my dad was unconscious for 3 days in intensive care unit he finally pulled round beyond belief of the consultants they removed him from there care into a ward on the 4th day he devolved a chest infection his stomach was like he was 9months pregnant he was just skin and bone they could not do a drain on his stomach because his liver was in complete failure his blood was not clotting so they could not do the procedure on him. And that's when they took me into a side room and told me my dad has days maybe a week left to live I was heartbroken my dad was going to be taken and there was nothing I could do or the hospital could do, I had to make the decision to do no resuscitation or life support as it's only prolonging the heartache and pain for my dad, hardest decision I have ever had to make!  My dad was 58 years old I am 30 and all because of alcohol I lost the one and only man in my life, 17th July it was on a Monday I went into the hospital dad was having a bad morning they pulled me aside and warned me dad might pass away any moment I went in and sure enough my dad looked like he was meeting his maker I held his hand and told him it's ok he is ok I am ok and that I love him and within 5 minutes of that I had him from his death bed to sat up on his bed drinking and feeding him ice cream he was very confused and away with the fairys but he picked right up as the day went on he was complaining of some pain so the hospital gave him morphine and with that he was asleep for the rest of the afternoon so I left him peacefully asleep thinking I still have a bit of time I went home to get myself together I had a phone call from the hospital my dad had passed away within a hour of me leaving the nurses could not believe how quickly things changed they was sorting dad out laid his bed down looked at him and he was gone! They did not even have a chance to call me to get me back it happen that quickly. All I can take away from it was that my dad felt no pain he went peacefully and he did not know what was happening, 6 days of start to finish it all happened so quickly we didn't have time to think, and even know I can not accept the fact my dad is no longer with us. It's not something I wish on my worst enemy and I feel for anyone going through this or gone through this it's tough seeing the one you love go through such a thing! sorry it's all still very raw.

[Bubby2015]

My brother drank for almost 8yrs i knew he drank alot but it wasnt until he took himself to hospital in 2014 cause he knew sonething wasnt right. Here i thought he was getting chunky and it was a bloated belly. They had to stick needle in and pulled out alot of fluid. I asked dr if he was gonna die she said im not goin to say he is but im not going to say that hes not i will say if he doesnt stol drinking now he is going to die. He was released and by july he was drinking again ended back in hospital this time he was yellow as the sun. When released i begged and fought with him to get help he was only sibiling i had but he always had excuse. He couldnt quit cold turkey he shook and had siezures anytime after that i talk to him he was always sick sounding sayin he had to sleep sitting up was afraid to fall asleep stomach hurt real bad. Come march 22nd 2015 it all ended i recieved a phone call from my dad sayin BUBS GONE WE LOST YOUR BROTHER. My mother could not walk in his home so i being the only sibiling had to clean it out. Not to be to graphic but im telling story so othets can see the signs BUT his toilet was FULL almost to the top with black stool with bloody vomit in a waste paper bascket in front of toilet couple tissue leadin from bathroom to his bedroom to where i was told he was found on his bed. Going thru his things i noticed he wrote EVERYTHING down like DONT FOR GET TO WATCH a certain movie ON THIS DAY or CALL MOM ASK HER and MAKE SURE I CALL FOR APPT i came to realize its part of the last stage he was forgetting thongs so he wrote them down. I had people tell me he startex getting paraniod over things thats in the last stage as well he was yellow also last stage. He drank himself to death alot of drs and people think alcoholics deserve what they got. But thats not true they had an addiction addictions are not funny and and addict dont deserve what they get what they needed to get was HELP so when there back hurts stomach hurts belly bloats yellow skin forgetting things they are close to losing there life this is all i know of the liver when owned by a drinker

[An_Ally]

My father was diagnosed with liver cirrhosis in the February of last year, on Valentine's Day. It began as 'fluid on the liver', meaning he had to be drained regularly otherwise he looked like he was pregnant. In fact, when he was in hospital once, a young boy referred to him as 'the pregnant man'. In and out of hospital for months, mid summer he was referred to a strict hospital in Cambridge for a transplant. He didn't get it. We all thought it was from something in his blood that I shan't divulge in on here, but really, we all knew it was because the transplant would likely kill him and his liver was already too badly damaged. After returning home, still managing to smile, he went on two seaside holidays and on the Harry Potter Studio Tour, occasions we now realise formed his personal bucket list, and then, in late August, after a consultation with doctors, we were told he had a few days left to live. This was a Thursday. He died the following Saturday. But his last few days were lovely. It was more of a 'just die already' feeling I had after months of putting up with his 'I'm ill do whatever I want' demeanour, but not because I wanted him to, but so that he would be at peace. Anyway, in his last few days, spent at home in his own bed which I still sleep in to this day, he watched his favourite films, was visited by his loved ones and had his son (that's me by the way) constantly by his side, repaying him for all the times he had looked after me when I was poorly (from stomach bugs to a busted elbow) growing up. I'm eighteen now and it feels like he's taught me everything he knew and has now set me off in life, his job being accomplished, and has taught me to be constantly living for the day and not regretting anything. It was a nice last few days for him, really.

- An Ally

[Sunnierdays]

A man who I've known and loved for 9 years died from cirrhosis of the liver this week. He was an alcoholic. He was only 49 yrs old. I thank all of you for posting your thoughts and feelings and for sharing the details of your experiences about those that you've lost. Robert and I met through my son...they worked together at the time. Right away I liked him. We enjoyed so many of the same things and I cherish so many wonderful memories. Several years before we met, Robert and his wife divorced and he began to drink excessively. He drank himself into a coma and was hospitalized for a month. He came out of it, recovered and went into a 6 month rehab program but he had a disagreement with one of the directors there. He left and didnt graduate. After we became a couple I began to realize that he was drinking again. There were so many lies and so many broken promises...I would give him ultimatums and he would quit for awhile then I'd start smelling it on him and he would deny drinking and at times I thought I was losing my mind and would doubt myself thinking maybe I was imagining it. While we were together, he lost at least 4 different jobs. It took awhile but I began to learn that nothing I did or didnt do was going to stop him from drinking. He was going to have to want sobriety for himself. I loved him and couldnt stand to watch him kill himself. One day I asked him if he would choose sobriety for us and 2 days later he moved out telling me he believed he could handle a beer or 2 but because I did not believe that he could, he didnt want to put me through any more. After that we saw each other occasionally. We never lost touch. I never stopped loving him. The last communication we had was a text he sent 3 months ago from another state where he had moved. He said he missed and loved me and said everything was great. A few nights ago I got the call from his aunt telling me he had been in the hospital for 3 weeks on a morphine drip and had passed away that evening. My mind doesn't compute the thought that he is no longer living. He is no longer walking, talking or breathing on this earth. I had never stopped praying for him. A part of me had held out hope for him, that he could get well and that maybe someday we could be together. I grieve the loss of a man I loved dearly, a man who was a father to two children, he was a son, a brother, an uncle. I wanted to know how he may have died in the hospital. I wasnt there and it doesnt seem real that he is gone. Because of what everyone has shared and written here, somehow it has helped me to accept the reality of his death. I pray he has peace and thank God he is no longer suffering. This "disease" is so deceitful. It fools the alcoholic into believing there's no problem. It is so destructive, it destroys bodies, minds and touches endless lives. May you Robert and may all those that have been written about in all of these comments rest in peace eternally.

[TooOldForTransplant]

My mother was diagnosed with cirrhosis of the liver a couple of years ago. 6 months after she was diagnosed she had varicee bleeding. She is 76 years old today. Her cirrhosis is from complications of lupus. She has an average of an egd every two months to stop the bleeding. About 3 months ago she developed ascities with edema in feet and ankles. She couldn't eat and was very uncomfortable. They would not do a tap to release the pressure but gave her Lasik. The ascities never truly goes away. She just has varying amounts of fluid. Today she is very weak. Having trouble standing. She looked pale and even a little ashen. I'm not sure how much more she can take. She doesn't have any muscle left as she is also suffering from wasting. What I find strange is her labs come back almost normal.

[Hlihl365]

My mom is dieing of the same thing caused by lupus. She’s bedridden, confused, sees people and talked to people that are not there . She barely eats and drinks. Her urine is dark brown, she has jaundice...don’t know how much longer she has.

[gani1213]

my friend have suffered with hepatitis(not sure of the type)and liver damage.he was admitted to a local hospital where he was given iv treatment.suddenly he got serious and reffered to another hospital where he was kept in icu.after few days he shifted to normal ward and within three days his bp levels went below normal and shifted again to icu.and he was dead the next day.we are not sure how he was dead whethee due to negligence or liver damage is not curable since he was declared to be normal and suddenly he was dead.please help with some advice

[gazza2]

Hi all I would like to say is I'm feeling all of the hurt from all of you here, I have spent many hours reading I my self just got diagnosed with chronic liver disease stage 4 and I felt pretty much hopeless and of course feeling I was destined to meet my maker before time but in all honesty I have never been one to back down and I'm here to let you all know chronic liver disease can be maintainsd beaten I got a second opinion from another doctor he was trying different medication on me for depression after 2 months of being on lithium carb my LFT count has halved I believe lithium plays a big part for me but please consult you doctor as  I am not qualified in this area also centa -vite vitamins along with betamin1 I am also finding milk thistle really good as most people are aware the liver has an amazing ability  to  repair itself I was told by my doctor my bloods are looking much better  I have also got in-touch with a  dietitian she has told me basically get as many carbs in as possible my first doctor advised me different normal milk ok soya is best and 3 tetra packs of ensure heaps of vegetable blanched and of course if you are drinking abstain I gave up there a people out there I thought the world was full of doom and gloom bottom line is if we don't do something about it and get a second opinion we are robbing our-self of our rite to life please for the love of god understand nothing is impossible all about diet exercise and the rite medication why you have an ounce fight in you please fight I bought myself a little jack Russell p now walking 2 times with her and some times I am so tired at the end of the day's at the end of the walk I'm generally a bit tired and I can feel a ten pound dog pulling me up the hill she won't let me quit and that's not an option sorry about the long message think about that little dog's spirit hope this inspires many bless you all <B Gazza

[courdan]

My friend is only 31 years old. I am 27 and never thought this could happen to someone I care about for at least another 10-20 years. I also didn't realize how much he was drinking. He lives with my boyfriend and I. He started getting flu like symptoms December 2015. He says he just felt so weak that getting up to get a glass of water was difficult. He was always in his room and we thought he was suffering from depression, when really he was just constantly drained of energy. He missed alot of work as well. Soon after he thought he overdosed on robitussin and hallucinated/acted out this weird horrible scenario which is a story in itself. He got nosebleeds as well. Now looking back, it was because his liver couldn't filter out the medicine. I told him to go to the doctor and he has to this day not told any doctor about that event. He became jaundiced and doctors wanted to run a number of tests and did not come to a diagnosis. Well, 2 months ago he was admitted to the hospital for 4 days after he decided to go to the ER. They drained a bunch of fluid from his stomach (10 Liters) and did colonoscopy and endoscopy and he mentioned veins in his neck. He originally told us they had thought liver failure but apparently dismissed it blaming something else to which I can't remember. He started seeming better, was more social, going to work on more of a regular basis. We thought he was good to go. Although he has been drinking glasses of southern comfort every night still with poor diet and no exercise since his hospital visit. He lost alot of weight in the last month and my boyfriend heard him throwing up the other night. Friday morning at 530 he fell and made a hole in the wall (he said he tripped over the dog)..now i think that was a lie. While my boyfriend and I were at work, he drove to his moms where he vomited profuse amounts of blood and had blood coming out the other end, he collapsed and fell down stairs. They called an ambulance and was put into the ICU with hemaglobin of 4. They sedated and paralyzed him so he could try to stop fighting the meds for 48 hours. They hooked him up to breathing machines. Less than 18 hours after being admitted, the family was called in because he was not looking good. They are supposed to wean him off sedation today. And his vitals are stable now. That is all I know as of now and I'm scared for his future. I have been fortunate enough to not lose any close friends or family members and I'm not sure I'm ready for it. I know his prognosis is probably not  good. My boyfriend and I went in his room last night and there was a bucket full of blood, just blood, nothing else, and his mattress was covered in blood as well..thick dark blood. We wish he would have told us how he's been feeling and we wonder if he's known he may have liver disease.

[rob22222]

My Dad was given 3 months to live.  He stopped drinking and lived another two years.  He only died because he couldn’t handle being sober and went back to drinking.  After 6 months of drinking he was dead.  He believed that since he was able to save his liver once that he would be able to do it again.  The problem was that he didn’t have the same support system that he had the first time and he was using old medication from the first incident.  

If you want her to live, make sure she has a reason to live and has the support to quit.  

[AlixKubicki]

I'm going through the exact same thing. My mom had signs and symptoms for years of liver failure and she kept being brushed aside. 2 years of nose bleeds, large abdomen, itchy skin, anemia and confusion.  Six months ago she was finally told she had cirrhosis from a fatty liver, but wouldn't need a transplant for a few years. Early January 2016, she had an esophageal scope and varices were noticed and banded. A week later, Jan 16, she started throwing up blood. She was rushed by ambulance to the ER. 5 hours later the hospital did a scope and saw she never stopped bleeding (i seriously don't know why it took 5 hours. They knew she had varicies).  They gave her 10 units of blood and banded the varices.  They put a breathing tube in her to protect her lungs. She had TIPS procedure done the next day to help prevent another esophageal varices bleed. A week later she woke up and tube removed, but the next day she felt like she couldn't breath and started convulsing. They resedated and reintubated her. Then things got worse.  She got an Pneumonia, had bilateral effusion in her lungs, pulmonary edema. The blood transfusions reacted with her and she got TRALI. 3 days later I noticed her rectal bag was black, next day she was bleeding again but from the breathing tube rubbing her throat. That required more blood transfusions.  The lungs took another hit from transfusions . We were asked by the drs for her to have a trach put in, but only for comfort. Than the dr.s speculated she developed ARDs. She has 3 insurances, but the hospital said she had to go to an LTAC. So after being there for 3 weeks she was transferred.  After five days in the LTAC her rectal bag was black but not addressed. Next day a liter of blood was taken out of her stomach. She was rushed to ICU where she was resuscitated two times.  Again, more blood transfusions and her lungs got another hit. Two days later, her kidneys decided to stop working right. Than last monday, she threw up blood. Another bleed.. more transfusions.For a week and a half, the hospital has been pushing us to end life support. I don't know how this happened?! Her meld was a 7 in November,  a 14 a month ago and is now a 30! And they won't do a transplant for her. She's 65. She's not young, but this isn't her time. Now they tell us she is in a coma.. she has been sedated since jan.24. No more sedation medication but she won't wake up. Anytime they would lower sedation, they said she had panic attacks that caused pulmonary edema from her BP raising so high. But no one ever checked her brain. When she threw up all the blood, she passed out and my brother found her on the ground covered in blood.
It's a horrible situation.  And there's no use talking to drs. I told them she has trali. They ignored me. Next day They said she has trali.
If you or anyone you know has varicies, address bleeds as fast you can. Transfusions can do more damage. Should be avoided until necessary.  I know if my mom would of been treated like an emergency,  she wouldn't of required as much blood and plasma and maybe her lungs wouldn't of been effected.

[AlixKubicki]

Update: few hours after I wrote my comment, the hospital called and my moms heart was struggling. I was told she will probably have a heart attack. The next morning I went to the hospital, said my good byes and ended her life support.  

[dsurface03]

This is kinda long but I hope my story might help someone or someone may have some answers for our family.

I am going through the samething with my mother in law. My father in law passed away very suddenly from cancer. We where told he was in remission and then three days later he died at home on my mother in laws birthday. She has always been kind of dingy and my father in law did everything for her. But this past summer she started locking herself out of the house and car. Backing into things. But then she started saying things like asking my daughter why she was at her house with her boyfriend at 7:30 am waking her up. My daughter was at softball practice.

Thank god for a good friend of hers or it might have taking us to long to notice. We only live five miles from her we have 3 kids and are always on the go as well as her to. But she had started saying things about seeing my father in law. She would say he is out in the wood working shop. He has been dead for 2 years. There is a history of demintia in the family. We found out she was not taking any of her medication. When I called her Doctor she did not seem to worried and told us to monitor her meds and when she had been on them for a couple of weeks see how she was doing then and call her. But she did want us to stop by and get a urine cup and check to see if maybe she had a UTI. (That turned out fine) We set up a med planner an I went over everyday morning, afternoon and night. She had takin them for about three days and I noticed her stomach looked like she was about 8 months pregnant. (56 years old) I have been in the medical field for over 18 years and knew something was really wrong.

I called her primary Doc and she got her right in. They did some blood work and anouther urine test. This was on a Friday afternoon and Monday morning they called and told us we needed to get her the the hospital right away.

3 weeks she was in the hospital. Nothing in her blood work really stood out and they could not figure out why she had so much fluid building up in her abdomen. That day they took of 6 liters of fluid. 3 days later they took off anouther 4. Blood work everyday and still nothing. They did a CT scan on the 6th day and seen her liver was enlarged and decided to do a biopsy. That's when they told us she had chirosis of the liver. They started her on lactulose and said her ammonia levels where high and that was causing confusion.

Now this whole time I am asking how her confusion was doing and if they noticed it and they where dismissing it. Said she was fine. I even called out one Doctor who had seen her 3 days in a row who told me she did not seem confused and she was pretty with it. I asked him if she was really with it why did she just ask u guys to shut the windows cause the wind was blowing in her and making her cold. The Windows do not open in the rooms. She also told us she did not sleep very well that night cause her dead husband was shooting coyotes outside cause they where chasing the chickens.

I am going to try and shortin this up some but I have never had such a bad experience as we did with her. Her ammonia levels never really got high. The highest they ever got was 52, and when I questioned how that could be causing the confusion I was told he was not really sure because it's not really a problem until they get to be over 100.

When we asked how bad her liver was as in what stage she was in? We where told they don't go by stages and that her liver was really bad and decompensated and she would need a liver transplant. Never gave us a MELD score or a life expectancy nothing. They did question me how I knew about the MELD score and that was it.

We where told she would need full time care and that she needed to go to a nursing home. We had a million questions and none of them seemed to matter to them. She was in a nuersing home for 21 days until she did start getting better and her insurance would no longer pay. But about a week before we where told that my husband and I sat down and had a long talk that she is only 56 years old and we hated to see her in a nuersing home. I quit my job and we moved her in with is and I take care of her full time.

The 21 days she was in the nursing home she did have fluid taking off onetime and they took of 5 liters then. The Doctor there did not seem to worried about it and that was a big factor with us not keeping her there. My biggest thing is she has gotten so mean an is singling all her anger at one person and that person is me. I know she is in a lot of pain and her Doctor will not give her anything and told her to take Tylenol. She weighs 98 pounds. She has lost about 38 pounds since this has all started. All of her swelling has went down and she has not had to go back to get fluid taking off for a month now. She hates taking the lasick pills and the lactulose cause she has to wear depends. Sometimes more a lot more then I would like her to she flat refuses to take her medication.

We did find out finally she has a fatty liver and the medication Methotrexate for her RA caused the chirosis. Her RA Doc did blood work every 3 months and nothing looked out of the ordinary. Just like at the hospital. Her GI Doc did finally tell us after he gave us the run around that with the way her liver is if she does not get the transplant she will not make it over a year.

My other thing is she is 56, she has RA, the chirosis has started causing damage to her heart. It has caused bleeding in her stomach and they did diagnose her with the early stages of dementia. We are going to see a hepatologist on the28th of this month to see what they say.  Thank you for reading my story I am sorry it was so long but if could help someone who is in our same shoes I am glad to help. If anyone has went through anything like us I would love to here ur story.

[JayGei]

My mom went to the doctors yesterday for her blood test results. Shes a heavy drinker and has been since before i was born (im 16). She was told that if she couldn't get her liver enzymes down, she'd be dead within 6 months. I just want some answers and no one is giving them to me.

How long was it until you guys saw symptoms in your relatives/loved ones? What do I do? Even if her enzymes do come down, is there a chance she'll still die?

[mlowe82]

hi, I was just looking online for an answer to basically the question why my dad wasn't offered a liver transplant when we all said we would be donors....this is before he had any other complications. we are currently going through a legal battle as the hospital in question have admitted they screwed up! anger doesn't cut it! basically I read your message in tears...this is identical to my dad we lost in jan this year! your message hit my heart xxx

[fyhghj]

My father died of hep c in 2012. I was 23 years old. I was daddy's girl and adored him. Nothing ever happened until i told dad about it and saw him smile and be so proud of me.

Here we are 3 years later and it feels like yesterday. I will tell you the story.

Dad told us kids when I was 13 that he was diagnosed. My mom sat crying on the couch because her 1st husband died in a car wreck and she was so scarred to re live it.

His blood levels were off, thats all he told us. Dad was very protective and didn't want us to know his suffering or worry.  I remember when he had to take the shots and they made him so miserable. that was the first time he ever yelled at me. later he kissed me and told me he was so sorry for  being so harsh. I was not understanding.

Then he did many natural treatments. He talked to other people that had it. He prayed to God every day. We don't know how he got it. I suspect past drug use, i know he used to be a user before I was around.

Then when I was 15 years old, dad had the "flu". he was sleeping on the couch. i had never seen him so sick. I was away at a friends and mom said he just stood up and passed out. She took him to the hospital. He had to have so many blood transfusions. he was internally bleeding from his liver. We were so scarred. The doctor put a Stint in. We all sat in the room crying and the doctor said "do not be so upset, your dad will be ok right now".

And he was that we knew of. i could see his suffering though. his mouth filed with sours. He was very tired and pale. The last two years he lost a tremendous amount of weight. if we brought it up, he just smiled his dad smile and didn't say a word.

Two weeks before he died, he had internal bleeding again. they fixed him but he barely recovered. i was frightened how he looked like a skeleton in the hospital. yet

[Astchris]

Bless you.  Care givers are Angels and you've earned your wings.  I'm so sorry for your pain.

[Otterfrog53]

My brother is in the final stage of Cirrhosis of the liver due to alcoholism.  He and I were adopted, and his mother was a drug/alcoholic so he was born with fetal alcohol affect and became addicted to alcohol as a teenager when he had his first drink.  He tried to go through treatment but was unsuccessful, felt shame, couldn't quite (was born with the DDT's), and so just tried to isolate himself and hide his addiction.  Kind gentle soul... and now he is in the hospital recovering from a GI bleed... yes, he has the distended stomach, edema in his feet, vomiting and passing blood, confusion and forgetfulness, skin starting to break down, not too yellow yet though.  He thinks he has an ulcer that bled and he will be going home in a day or two, even though he knows that he has cirrhosis.  I think that he is scared, and doesn't have much information, though he tries to hide it.  I"m still waiting for lab work results.  Previously, his primary doctor just wrote him off, told him he would be dead within a year, and sent him home.  I hope that the hospital will do more to help him and us manage his care.  It sounds like this is a miserable way to die. I wish I knew how long he has to live... a year, a few months, a few weeks.  Not too sure what to tell him. I'm his only sibling, and mum and dad have passed on.  This all happened yesterday so I'm trying to gain some perspective on this. He isn't eligible for a transplant because he isn't able to quite drinking as the DDT's would probably kill him, so now he drinks a few beers every day.  I've heard about a partial living transplant where a living donor gives part of their liver and am wondering if I could do that for him.  I want to scoop him up and run away with him to Mexico but I know that he wouldn't want that.  It's hard to know how aggressive to be about his treatment, and how much to just do what he says... sometimes I think that he thinks that he's just "not worth it" which makes me very sad.  Thanks for listening.

[SnKZabel04]

My mother just passed from end stage non alcoholic cirrhosis.  She had the disease for over 30 years starting out as hepatitis.  Up until 3 years ago, she wasn't exhibiting any symptoms to speak of.  Once the symptoms did appear, they were controllable to a degree.  She developed a umbilical hernia last year due to all the ascites.  The doctor and his staff didn't seem to be worried about it, and didn't do anything.  Just "pushed" it back.  She became sick and was rushed to the ER shortly thereafter as the hernia now caused a bowel blockage, and she had to have emergency surgery.  She then developed a blood clot in a horrid hospital ICU here.  This all started the down turn.  She deteriorated greatly within the last year.  Losing weight, the fatigue, constantly have to have the fluids drained, and etc.  I felt helpless.  She did too.  She was a active individual before this disease took over.  She did things for herself.  She no longer could, and it frustrated her to no end.  She wouldn't let me do really anything for her as she was always the strong one.  She did things for herself and dad.  They both were in denial I believe too.  She fractured her pelvis a month ago, and that was the beginning of the end.  Over the month, we had: 3 ER visits, a week in the hospital, 1 1/2 weeks in a nursing home to attempt rehabilitation to get her to walk again, and finally hospice.  In the end, I don't know how much pain she was in.  Her blood pressure tanked, and couldn't be revived.  Her hemoglobin was so low.  They gave us hours.  She ended up lasting 3 1/2 days in hospice.  The alternative was life support and a ventilator.  Sometimes I regret the hospice care.  I sat and watched her die a slow death gasping for air.  No food or water.  This was supposed to be a dignified death keeping her comfortable.  In my eyes, it was inhumane.  She didn't deserve any of this.  Especially that.  If I had to go through it all again, I don't know what I would have done differently.  I do know the health care system here is broken.  Very broken.  It needs fixed someway somehow.  The system isn't the only one at fault.  I also blame the insurance companies that put profit ahead of dignity and compassion.  My only comfort is me being with her when she died and she is no longer in pain or miserable.  She kept hanging on long enough to get to my birthday.  It was obvious.  She died within 5 minutes after midnight on 6/27.  Why she did that, I have no clue.  We bury her tomorrow.  It hurts greatly.          

[karen608]

Husband in end stage liver disease and does not want any hospital just to die at home. Vomiting brown this afternoon and asking to be left alone, if he dies he dies. Hard on me but he said he wants to go home to Jesus and not go on and on with this. Will see what happens next and I tell him I love him. So hard on caregivers. He has do not resescitate order so he just wants to leave this world on his terms.

[karen608]

Husband was not a drinker. He died July 2nd, 2015. A year and a half later his younger brother died of the exact same thing. No drug use, no hepatitis can someone just inherit a tendency to cirrhosis  I don't know.