Currently going thru liver failure

I am currently going through liver failure.

I have read with much interest and empathy the posts on this list in regards to what happens with this disease.

If there is interest, I will contribute my circumstances, history, and updates as to my "progress".

In 1994, I was diagnosed with hep c. I did not drink at that time, however, I married the woman of my dreams and she loves to go out to bars. So, I began drinking. I now consider myself an alcoholic, though, haven't changed any habits.

About a year ago, a blood test showed "imminent liver failure". I work out every day, appear completely healthy. But, don't want to quit drinking, don't want a transplant (not even sure I qualify), and at 52 years of age, believe I've lived a good life.

My health is surely degrading. My urine is very cloudy. I am on the brink of something that many listmembers' loved ones have gone through.

If there is interest, I will post my progress, so to speak, from the perspective of someone who "appears" healthy.

I am sorry for the losses the listmembers have experienced. I know first hand that some are interested in a detailed report of how liver disease progresses. After all, many of you knew about your loved one's problem long after they, themselves, knew of it.

I know what I'm in for and am willing to share the experience, if others are interested.

Please post to the list if you want me to keep you abreast of my disease/degradation. It may take some time, but I will do the best I can.

[marialou]

hi my name is lisa,im afraid i dont really know much about your condition but i wish you all the best and i will follow your progress as im goin through a similar experience but with my 14 yr old daughter.she has a nerve and muscle disease and is gradually worsening and both are incureable and untreatable.she has an extremely rare syndrome of only 15 in the world and i lost a 4 yr old daughter 12 yrs ago who had the same syndrome and im absolutely petrified. my daughter is happy and that is all that matters to me. i dont know what the future holds but i live in hope. i wish you all the very best
with sincere wishes lisa

[teko]

I think you are very courageous and must have a very giving heart to offer this to us.  I have a friend, not a whole lot younger than you, who was an alcoholic in her younger years. She also did drugs. She contracted hep c many years ago, her liver is very bad and she contracted primary liver cancer as a result. She has been turned down for a transplant due to the size and number of the cancer tumors. She did do the chemoembolization one time and is scheduled for radiation beads as soon as her bilburium levels go down. She sleeps alot, diareaha alot, swollen belly and ankles/legs. She is on oxygen at nighttime and has a thing in her side where she puts medicine daily and has something called portal hypertension. But appears healthy. What are your chances of liver resection? Have you checked out all options? There are more out there than there were even 10 years ago.

[Zepora]

I have tears in my eyes just reading your post, but I want you to know, even though a lot of us here are suffering end-stage liver disease brought about by HepC, drinking or whatever, as am I, we are all interested in your post as it is a good way for you to be able to share what you are going through and it may help others to prepare themselves for that time, themselves.
I am at peace with God and have no fears of dying.
I would like to keep in touch with you and hope that you continue to post.
May God Bless You and guide you.
Hugs & Prayers,

[john4321]

I recommended visit this near death experience site http://near-death.com lots of profound nde's and answers and what life is all about and why we face these situations . My grandfather passed away last year due to liver cancer , it was brought on by untreated gall bladder stones , it was quick from healthy to no more within 6 months , did not suffer much . I am not sure how slow or fast hepatitis is , will pray for you . May God give you strength and courage and a fighting spirit .Sometimes  If we accept our condition in life instead of fighting it then our anxieties will be greatly minimized.

God bless all of you

joy

[anita_43]

Hello
My name is Anita. I am 43 years old. I was married for 20 years - In June of 89 my husband was diagnosed with HIV. I was so scared. We had at the time two small children and I had just lost a newborn baby 5 months prior. Little did we know from the time he was diagnosed with HIV, the doctor never tested him for hepatitis c. As we all know everything we breath in and eat goes through our livers, so, the medication he took too combat the hiv virus into an undetectable state, in the end, put the in end stages of cirrhosis. In August of 2002 he began mentally acting "different' memory problems arose, and jaundice appeared and a smell from his skin no matter how much i bathed him wouldnt go away. September 2002 he got a small blister on his foot, it wouldnt go away, i took him too the ER and they gave him antibiotics and sent him home, about 3 days later he developed on his shin area a small red cellulititis patch and the blister wasnt getting better at all, so back too the ER we go, now they admit him, run IV antibiotics, and do more extensive testing and find out he's at the end stages of cirrhosis brought on by hepatitis c. I was ANGRY, confused, i felt betrayed, i put my trust in this doctor who claimed he was chief of infectious disease and had been his doctor for almost 12 years. His liver enzymes were always elevated but the dr dismissed it too it being the hiv meds. While in the hospital they gave him a year too live, then another doctor came in and said six months, and stated they could keep him there and keep him comfortable. NO! my husband was going home! I did agree too hospice but only for medication needs and too monitor his blood pressure, heart rate, etc. He got ascites very badly. Belly down were very large, not too be too forthcoming, his testicles were the size of canalopes, and when your liver shuts down and the fluids have know where else too go, his skin soon began too 'shimmer' and that was the fluids coming out of his skin, i had too keep my children and i in shoes and put garbage bags under the bed too collect the fluids that we heard constantly dripping from the sides of the bed. He was only 42 years old when he died. My best friend, my soul mate, the person i promised my life too. This shouldnt of happened.
His urine, like mine, began at first cloudy in appearance, but later on smelt like the most foulest thing you could imagine, then it went too a dark/rust/brown/deep orange color/billirubin. Itching is another common side effect, the toxins coming out of your pours make you stink and itch, EVERYWHERE, a medication called Ativan helped alittle with that.
After he passed away, i flipped out and went into a world of being comfortably numb. I ran away from anyone who needed, wanted, or loved me. I didnt want too be told how too feel, when too feel, or what too feel, i rebelled and relapsed after 12 years of sobriety which is how i obtained hepatitis c. genotype 3a. I am now a caregiver too a family member that has the same disease as i, same genotype, and DID do and complete the interferon. While it was a "*****" too do and complete, they DID IT, and the virus is undetectable. NO its not a cure, but its a way too slow down the progression of this disease.
If i may say with all do respect, your wife, family, loved ones need you and love you and I just WISH too God that my husband could of lived too 52 years of age, but that is STILL TOO YOUNG, so much life ahead of you. I don't know if you have a wife, kids, grandkids, family, friends, etc, but why don't you ask them, what it would be like not too have you in their life?
When i married my husband, i also married his health, and i'd do anything too protect, or help prolong his life if that meant him gaining more happy years with the ones that love, need, and respect him.
I'd much enjoy corrasponding with you, if are inclined too do so with me. Sometimes talking with people that have been there, but are not standing in front of you, makes it easier too relax and discuss whats on your mind, and whats in your heart.
Best regards,
Anita (michigan)

[chronicpain7years]

Im so sorry for your loss and commend you for joining this type of group sdo that you can get your anger and feeling out in the open! I too have Hep C but I am one of the few lucky ones who seems to have came in contact with it but my body protected me. They do bloodwork every 6 months and CT;s every year becuase my AFP are always elevated.
I wish you the world in happiness and good health Anita. If yo need a shoulder-Im here.
Katie

[germainemc]

God bless you for having the courage to deal with all of this.  A person I care about is currently in ICU dying from liver failure.  It's very sad and she is not a candidate for transplant as she did not stop drinking...  I now know that even for alcoholics, a person only needs to be free from alcohol for six months in order to be eligible for transplant.  I know alcoholism is a disease, and I certainly don't judge because I enjoy a cocktail or two or three, but if seeking help to quit drinking means living longer - it leaves one with a seemingly obvious choice - live or die.  

My friend was diagnosed two and half years ago.  Doctors told her she had to quit drinking and that her liver was failing.  Her legs started to swell and she started throwing up and getting nauseus.  She became a "shut in" because she was so tired and sick.  She continued to drink heavily.  Her abdomen became distended.  Then came the hospital stays with intervention to drain the fluid from inside her abdomen.  The liver secretes fluid and the fluid builds in the abdomen until it has to seep out of other areas.  Then came the sores and eventually her legs looked like they someone had dipped them in boiling water. Swollen and blistered, and wet.  Same as the other poster said, towels and other things were used to soak up the fluid. She was still drinking. Recently she lost consciousness and began bleeding from the mouth.  She is now in ICU with tubes draining fluid from her abdomen, catheter for urine and feces in obvious places, IV's, a tube down her nose to drain the fluid out of her stomach which was making her vomit, wound care working on the legs, oh and oxygen to help her breathe because the abdominal fluid pushed on her lungs, and is filling her lungs. Her heart is having a tough time due to the fluids.  She is septic and has infections in her legs.  Her bleeding time is very slow (another effect of liver failure) so they were giving her blood and FFP, but have stopped so she may begin to bleed from areas other than her mouth.  Although doctors say she will not live, her husband would like to keep her alive for six months so that she can have a transplant.  The sad thing is that she will not be eligible and won't make it that long.

It's a horrible way to die.  I wish I could help her. All I can do is pray for her to pass peacefully.  For those who have a disease like Hep C or cancer, transplant is a good option. For those who have been told their liver is failing and they need to stop drinking. I hope this reaches you. There is help for you to stop drinking.  We can survive on very little liver function...

[littleone650]

On December 1 my dad is suppose to turn 42, six months ago he was told that his liver is failing and that he needs to stop drinking. For the past 21 years of my life my dad had been drinking excessively but mostly on weekends. He suffers from alcohol induced psychosis. Outside of his drinking problem, my dad is a great person.
Now the alcoholism has broken my family apart. My mom leans on me for support and Im always there to comfort her. and my brother, smokes a joint every night or goes out to deal with it. I work 5 days a week, go to school in the evenings and spend weekends being there for my parents.
I need support too and dont know where to find it. i have friends but I feel like no one understands what its like living with an alcoholic.
I want to know how long it takes for a liver to fail? How much longer do i have my dad? ...
my whole life has revolved around my parents, my purpose has been to keep them happy. Now my dads dying and im losing my mom because stress is making her ill.
I've been positive, i've talked, ive prayed, ive cried, ive screamed and yelled, ive been nice, ive been mean...
of done it all and at the end of the day feel like i am unable to help my dad fight this.
Its not fair and it hurts... im losing hope and dont want to... someone please help.

[pinkjones1972]

Can someone please tell me if having Liver Disease is in the same class as being disabled?
My friend has been told he has liver disease and doesnt know if he can claim disabled benefit.
Along with this he has Hymophillia which is a rare blood clotting disorder and if he cuts himself he needs to go straight to hospital for treatment. Factor 8 and FFP is put into him.
The guy is a mess and is very confused, but i do have respect for him as when he found out he stopped drinking and has not picked up in over 2 months now.....
any advice please

[mom21cuteboy]

i am sorry to hear of your circumstances and my husband has an uncle whowas diagnosed with scorisis(so?) of the liver he was told if he quit drinking there was a chance he could be put on this for a transplant he did quit cold turkey but he he quit  he stayed sober for a little over a year they put him on the list and we were shocked but happy none the same he had done everything they asked of him to meet the requirments of a transplant recipiant he eventually got the call and is living a pretty normal life an now instead of beer or alcohol he always has suckers and root beer i find it cute that he now driks root beer:) i work in a hospital and i see patients come in with liver failure and i do have contact i help themchoose a menu for each meal their there that is appropriate for their condition so i have seen liver failure in family and in the patients i meet just because you drink does not mean you can never be eligable fro a transplant its possible i just want ed you to know it was a possiblility for our family memebr maybe it could be for you too.

[MsRATBAST]

Yes I would believe he would be able to collect ssdi and ssi disability. My husband is currently near the end stage of Cirrosis (cirrhosis) and it's a hard battle, been there with both my brother, he had aids, then contracted Hep c wich caused the cirrosis (cirrhosis), he passed Sept 28, 2005. My late husband died of alcoholic cirrsis Nov. 1, 2005.  I never thought it could happen again, but now my current husband is going thru the same thing. He is wasting away to nothing, he has stopped eating, but will still drink water,  If the feeding tubes don't work they will send him home on Hospice.  

[dizz294]

Its my partner who has a drink problem, he has been drinking since his 20's he is now 56.He does'nt think he has a problem, I have got used to his drinking, but the last 8 months its beginning to affect our relationship. I am sick to death of him falling over drunk and saying Im to old to do this,the last 3 months he has turned yellow, 1st it was his eyes and now his skin, he is constantly tired and cold and has an appetite of a mouse. He has lost loads of weight and his legs and feet are swollen, he has also got red spots on his chest,bleeding gums and his belly is enormous.
I have googled all these sytems and I think it is liver failure. I have told him to go to the doctors and finally he has, but about his heart condition, as he also has IBS and dilated cardiomyopathy.
I have asked him about what the doctor said about his colour and apparently she said his liver is not happy, thats it, no tests no counselling no tablets, he is in complete denial, its me that is dealing with all this crap, as he does nothing at all about this and is carrying on like this normal behaviour.
I am fed up with coping with him, working full time and looking after my daughter and the house, he never talks to me and tells me whats going on, how long is this going to go on, because I don't want to be a carer for someone I no longer care for.
This may sound harsh but the amount of times I have picked him up and helped him, and told him not to drink so much I am really fed up, and all he does when he is awake is critizise me if I havn'nt done something.

[Gdaugther]

I hope you are still around I  think my dad had funny colored urine for years
I belive in his case the danger zone is with continued drinking and loosing body mass
and reocurring acites (ascites) meens he is close to the end just do not know if it's days months or years

[MARYFLORES]

ITS NOT FAIR THAT A LIFE BE CUT SHORT BECAUSE OF ALCHOL,,MY BROTHER HAS VERY ADVANCED LIVER DISEASE,,AND NOW IS BEING TOLD HE HAS TO BE SOBER TO BE CONIDERED FOR  A LIVER TRANSPLANT,,,,,WHY WASNT HE EVER TOLD BEFORE,,???????NOW THEY TELL HIM....HE IS VERY SICK,,,,HAS BEEN SOBER FOR ONLY THREE WEEKS,,AND HOSPITALIZED,NOW THE DOCTOR SAYS HE HAS A DEAD LIVER,,IM SO MAD AT THE DOCTORS AND AFRAID MY BROTHERS DISEASE IS TOO ADVANCED NOW,,,IM JUST CONFUSED  ,,IM 47  AND MY SINGLE YOUNG BROTHER IS ONLY 31,,,,

[ra2011]

I am 51 and am female. I was diagnosed with Chronic Hep C and my liver in stage 2 or 3 in the year 2008. I  either contracted the virus when at the age of 16 or 17 when I had tried drugs., or when I had worked for a blood bank in my early 20's which happened to close it's doors due to an outbreak of the Hep C virus. I had quit drugs at 17, and stopped drinking in my early 30's. I stopped smoking cigarettes in 2004.  I also have Thalacemia Minor (spelling ? A form of anemia). Because of the anemia, I cannot undergo liver treatment. I had tried, and with in 5 months I had lost an extreme amount of red blood cells. My Hematologist told me to IMMEDIATELY get off treatment. I feel tired a lot, hard to concentrate sometimes, I itch from head to toe, but have sores that come and go only on my back,, buttocks , legs and feet. My feet and ankles seem always to be swollen; especially after work.  If I have a day off or two the swelling goes down because I am able to rest.  I find rest to be very helpful! I try to eat lot's of fruits and veggies and drink a lot of water. I do love cereal and bread, but I am trying to limit myself on both of those items.  I will under go an MRI on Oct 1st of 2011 to see if my liver is in the cirrhosis stage. To die of liver disease sounds just HORRIBLE. I hope to go quickly. I would not want my daughter to watch me suffer. By the way, I found a line of boils on my leg about an itch long. They seem to continually ooze. I keep a clean gauze over them every day and night, but I question how they got there, or maybe I scratched myself to hard.  Any ideas?  I wonder too, does the intense itch from head to toe mean I do have cirrhosis of the liver more than likely, and that my time here is getting short.  Thank for your response . Sincerely your friend

[elizabeth88]

My dad has cirrhosis of the liver he was 44 years old when he was diagnosed with cirrhosis of the liver . My dad has always been a heavy drinker , He would go every night to the store and get 8 to 9 cases or beer or any beverages he could find . My dad was abusive to my mom when they where together , I was adopted out when I was just 6 1/2 years old I don't have that relationship with my father that I have always wanted since I have found out that he has cirrhoisis and hepititis (hepatitis) C . I have tired my best to do everything that I can to make that relationship because i know that with all the signs that I have seen so far I know he won't make it much longer . I have seen my father skin turn yellow , his mouth is starting to bleed , is adbomen is swelled and his legs ,ankles, and feet are swelled . They are red and like they are set on fire , Everyday I ask myself I hope and pray and I cry because I know one day I will get a call and it will not be a good one . I have that gut filling that something is going to happen and it won't be good . I just wait and pray that is all I can do . My father is know 54 years old I am thankful that I have got to have a realtionship with him for these 3 years and if something was to happen to him I would brake down and cry I don't know how to react to it . I am so hurt because I have always wanted my father to be around but I know he won't always be their . I hope that when he does pass he will pass peaceful and I hope everything will work out with you . My god be with you and I do not jugde people who do drink . I know my father did but his was from his childhood and he couldn't talk about his problems to other people .

[molallagram]

My heart goes out to each and every one of you.  On the bright side, I have hep c which has progressed to stage 4 cirrhosis (compensated) and HCC (Docs "nuked" a small tumor in Feb.) Six mo. CT scan was negative for more tumors.  I'v had hep c for 30+ years. The only symptoms I have right now are depression and chronic fatigue. I have to watch what I eat as fats, sugar etc. play havoc with digestion. The docs say I can die with hep c and not of it.  I don't know what the future holds, but I try to have a positive attitude, eat right and exercise.  I'm interested in what comes next.  God bless you all.

[skids42]

I read the stories here are very much of the same suffering and heartbreak. I can only relate to my story with my wife of 27 years diagnosed with liver disease which we believe is Cirrhosis but have not actually had this confirmed by doctors. She has all the signs ( ascites, jaundice, lack of appetite etc.)  We met when I was 15 and she 13. She is now 48 and I 51. Although not same School yard sweethearts, we did meet at an early age and have been together since. I can only be up front and say that she is and always has been my life, soulmate.
After our two daughters matured, she started drinking, just a small glass of cheap cask wine a night at first, then as time went on, the glass got larger and larger and on to two, three or more glases per night. After a number of years (15) this turned into at least a bottle of sherry a day. With heavy spirits mixed in to the equation in the form of a bottle of brandy lasting usually two days, sometimes one, we are now faced with an unknown future. Many arguments, violent behavour and arrests with a short prison stay did not deter her. Like others who have posted here, my wife denied she had a problem and now still believes it will all heal itself. Fortunately she has stopped drinking for the interim anyhow, who knows what may happen one or two months down the track. I have no idea if she will go back to that demon drink. She has been through detox a number of times but has returned to the drink. Of course I as well as the family are hoping this will be a wake up call but we are now petrified that it may be too late for her, the damage has been done. My daughters have askled me if we should all plan for the worst. I have told them "no" but am I also in denial?

As this woman has been my life I dont believe I could cope without her yet all the heartache she has put me through I do hold inside.

Sorry I am dribbling on now. The question is, is there hope, can there be light at the end of the tunnel or do we "prepare" for the worst?


Paul

[mndaughter]

It is nov 11 2011...
My mom is in i.c.u.. bad jaundice..edema..renal failure ..had dialasis last night but wasnt sucessful..  my mom is in denile..and we r watching her last moments of life.. it is bad for her and very hard for us.. i am angry.. sad..broken hearted and can barely sleep here cuz i know whats about to happen. She has fluid in her lungs..spitting up blood..toxins building up..and she thinks tomorrow there will be a new liver.. she had five of us and i am the only one here..staying for each minuet..u will never know how much time u will really have. Stop worry about when how and why. Be grateful for each second they r aware of your presence. Love and be strong. We lost out step dad to cancer 11 years ago..never thought my mom would suffer just as much as he did... I know what will become of this week.. cherish every moment.. thats all we have.. no case will every be the same..except the result.
I am sorry for all your losses. Peace be upon all of you

[Sharkbait2go]

I stumbled upon this forum while looking for answers to renal disease, actually, but I paused when I saw your post because you touched my heart. It has me curious as to how things have progressed for all of you, seeing as your original post was over two years ago. I hope and pray that you have pulled through and are happy and healthy. Please reply, I'd love to know that you're ok.

Rani

[Sharkbait2go]

How did your MRI go? I hope you are well!!

[wild2peaceul]

I don't know you but I love you... I understand what your going through my moms oncologist told me to give up the fight for my mom life because of liver cancer.. I don't know how to give up on my mother... I'm so tired!! Oh God it hurts so bad and I love her so much!!! She's my first thought every morning and my last thought every night...   May God have mercy on you and keep you strong...

[soulsearcher9635]

My kids father has cancer in his prostate, liver and kidney. The doctors say there is not much they can do but make him comfortable. He had to go 2days ago and get a shot to make him urinate. I am wondering how long he has left and how to prepare my kids with his condition. They know he has cancer and that he is sick, how do you tell three young children such terrible news?

[snoopy623]

Hopeful Jeff and you all keep try one's best.  I has hep C since 1986 @ age 27; been through hard life with alcohol for the last 30 yrs.  I am trying to quit many times but the demon keep haunting me back to the bottle.  In 2006 biopsy come back as stage 4 cirrhosis, then 2008 stroke struck and all the complication of diabetes plus eyes going bad. In 2007 MRI show small malignant carcinoma in the liver, ascites, leg swollen. But now I am bounce back;  by believing in whatever your religious are.  Keep praying and change your way of living.  Do not associate yourself with negative thought or persons; be active in your daily life'  My remedy are walking, cyling and taking milk thistle, liverite, centrum silver, omega 3 fish oil 2000mg, calcium+D3 & herbal phyllanthus. Eat well balance meal NO high fat food. Drink a least one gallon of water a day to flush out your waste.   At 54 now I think I have a good change for awhile IF I keep this up.   Good luck to you all & keep praying.  Forgive and forget be happy because life is just as fantasy dream.

[banjoeyes]

My name is Angie culp...I am 44 and I am an ex I.v.drug user...I never shared..worked hard and payed my bills... I thought I was OK...I met a man..with hep c....only shared once with him...now I am swollen..I am sick with almost constant diarrhea ..I have a smell of rotting eggs coming from my insides...I am rotting I think...my viral load is way above 400...right now and I am very sick...I'm not sure how long I will make it...no one does....I would just like to know what I'm to look forward to

[snoopy623]

Cirrhosis, which is the very end stage of liver disease cause many problems with chemicals in the body, to include the brain. Most people with cirrhosis start to feel tired and lethargic and don't shower as often or lose a sense of proper hygiene. This is very common. They actually don't realize they have forgotten about their hygiene until they are reminded.

Now do you turn yellow?, If is caused by jaundice, and it does not omit.  This is a very late sign of liver failure and most assuredly is a fatal sign. It is also known as the breath of the dead. The reason being is it happens when a person with liver problems or liver failure. This smell however is usually a pungent smell. It is very strong and noticeable.

If your friend has this smell, he should seek medical attention immediately. Especially with cirrhosis. Any change in normal behavior with a cirrhosis patient should be evaluated.

Source(s):it means, your friend is in an advanced stage of liver cirrhosis.
the rotten egg smell is from hydrogen sulfide,coming from inside the body, this happens to all people with liver failure.
normal liver cells will change into scar tissue=cirrhosis-       Copy from Yahoo Answer.

[mojoworknn]

You can get disability. My ex husband and brother both got it. It is considered terminal, so that's why.....

[56deb]

Baby you are not God. I  love God, but I'm glad I'm not or who else would I give my problems too when they over whelm me! You are talking about your loved ones dying. Bless your heart but they are the ones dying.You are the one that is going to die before them if you don't give yourself a break and give it to God.He loves you and wow when you do give it to God.you know the old saying weight lifted off those shoulders. Grab Him and hold on tight there is no other wonderful feeling than to be loved by God.Get that personal  relationship going on and you and your family will be fine,just in different places. Don't worry about that you all will meet up again.. I've been dying of Hep C for 25 years-now that's too long  ha! The best gift God ever gives you is eternal life. now be happy and don't kill yourself before you have begun to live. I've lived to long . I can smell a youngster a mile away. Take a deep breath just because you can!!