How much longer??

Hi, i'm new here, my dad's liver is failing (hep b, drinker) he has had symptoms starting this year, he's slowly going downhill, he is weak, has fluid in his abdomen, doesn't eat, is naucious and even passing out, even though the doctors say he doesn't have ciroses he is in end stage liver disease, my husbands father died last year of ciroses, he is refusing seeing doctors for treatment, anyone go through this? how much longer does he have??
 
Morgansmum
I just lost my brother to cirrhosis. It's hard to give a time frame but I can tell you how my brothers disease progressed. We noticed the swollen belly and loss of appetite for the last year..maybe more. In August he went in to the hospital with liver and kidney failure. His dr said "maybe 6 months" and we got to have him around for 4. He was so weak, always sleepy, nauseated, cold and most obvious...the swollen belly. He had constant diarreah (sp?) and it was light in color. What little urine he put out was almost black. His voice was slurred and very weak sounding. He became so bony all over except for his belly and for awhile his feet, andkles and legs were swollen. And he was also very jaundiced. Do you have any blood test results? I hope this helps. I know when I posted I got no answers and could never figure out why. So if I can help, I will be glad to. There's nothing worse than to keep checking for answers and never seeing a reply. Hang in there.
Hi, thanks for your responses,we're noticing lots of the sympoms now, swollen belly, his eyes are really jaundiced, he has diarhea,and is often cold and his ankles and feet are always swollen, no appetite, even loses conciousness now, so i guess i'm looking at sometime in the new year, my husband and i are in the canadian military so we were posted in the middle of the country with our parents on either coast, now we are close my parents (4 hour drive) my FIL died about 1-2 years after getting sick, i only know what my mother tells me because my father never says anything, i'm glad to have someone who has went through this (well not glad but you know what i mean) i'm sorry to hear about your brother akrs .
I forgot to ask, my FIL fell into a coma a few days before passing, did your brother? i'm wondering if it's something that normally happens in the end??
I read everything I could get my hands on and even asked my cousin who is a doctor and was reasurred that he would just "slip into a coma" but he didn't. While he was in the ICU they pumped him full of morphine so he was in what the nurse called a "drug induced la la land." When my mom and I got to the hospital (5 hour drive for us) he was still coherent and got to say his "goodbyes" to us. He had signed a release to I could have access to his medical records and I studied every blood test, biopsy and ultrasounds. He had his belly drain several times, the last time being over Thanksgiving and was already to have it drained again. The belly was what was causing the diffifulty breathing...so they needed to do a transfusion first because his blood would not clot...that was the beginning of the end because he started to bleed and they couldn't stop it. It seems that everytime they fixed one thing it would cause something else to break. At the funeral home they drained 3 gallons off his stomach and that was the same amount they drained while he was in the hospital over Thanksgiving so his fliuds were building up fast. He was close to the end....we were just hoping for a couple more weeks. Even a couple days would have been okay. But we also didn't want him to suffer anymore. Sorry you are going through this. I'm here if you need me.
hi Morgansmum. I have had cirhosis for 10 years now. I have been in a comma 4 times. they gave me 2 weeks to live in 97. I'm still here. there is always hope. I don't want to give you false hope but in my case things did somehow stablize. mystery to the Drs. Others go into a comma once & its over. There's no way of knowing. Sorry hon wish I could be of more help. No body answers my posts either but if you want I'll be here to support youif I can.Things are getting bad for me again but I try to visit this site regularilly. I'll pray for you. Your not alone. later...


lerie

Morgansmum

It would be good if your dad could get some tests - he might be anemic (why he is cold) - my Dad started taking Iron and a multi vitamin - he is still cold but not as bad - also he took water pills to reduce the swelling in his legs but couldn't take them too long because they are not great for the kidneys, this was under dr. supervision. If your mom can control his diet - no salt/caffine - lots of water - green veggies (spinach is great) - my Dad drank alot of cranberry juice - I don't know if that is what did it but he improved. The Dr. said balanced diet not too much or little of anything - my Dad also has one of those nutritional drinks in the morning (like Boost) - he mixes it with ice and fruit for taste - it gives calories and some energy and if your Dad has no appetite at least it is something. I'm sorry you can't be close to your Dad to see the situation. Hang in there.

lerie,

Can I ask you??? I've posted a few times - my father has cirhosis - he was given days to live and pulled through and is really up on his feet doing well now after 4 months - you'd never know he was ill some days - but some days (like today) his speech is very slurred and it seems almost like he's had a few drinks (he hasn't) - does this happen to you? I'm thinking his diet effects him - if he has had salt or not enough greens for a few days he isn't as well as he could be. He is stubborn though and won't live without the salt but he has been pretty good about beefing up the diet if I mention it - adding greens or not eating junk type food for a few days.

Any thoughts?
Hi PN16. Yes this happens frequently, but I find these little things help me, No more than 2500mg. vitaminA per day(vitaminA is toxic to a cirhotic liver) , same thing wiith niacinB3 max15mg. day,protien 45g. day liver can't breakdown protien & other things anymore. 32 ozs fluid day & 600mgs. sodium day. B vitamin supplements except b3, vitamin d, c, &e supplements with a few other things. Lower fluid & sodium intakes reduce my acceties & edema. Check with his Dr. first of course because some of this depends on his stage. If I feel really bad & can't eat then I resort to mashed potatoes With milk in them. These are easy to digest & require no liver bile to digest. If he takes good care of himself he will have a better chance of beating the odds . I can give you more little tips thats worked for me all this time if you want,but keep in close contact with his Dr. Lactulose also helps a lot. Also on my bad days my husband keeps a brief journal for the DRS. Hope some of this helps. I'm glad he beat the first time frame they gave him. Take care & stay in touch.


lerie

Lerie,

Thank you very much. He is only taking vitamin B and a multivitamin but I'll check the amounts on that and he takes iron - I was thinking after I wrote that he may be due for the lactulose - he doesn't take it regularly because it goes right through him and he feels tied to the house all day - he takes it about once a week. His appetite is good and he is sleeping a lot (about as much as I'd like to be sleeping:) - I try not to say anything about the salt because then he pours it on his food to make a point (I am the daughter!!!) His good friend has been giving him tips about that though too so I hope he listens. He isn't feeling bad enough that he is worried so that is good on the one hand but bad because he doesn't watch his diet as closely as I'd like. We're just figuring it all out. The journal is a great tip - since my Dad is off hospice now it will be longer before we see the Dr.

Have a great New Year. Thank you again for the tips.

Patty
PN Lactulose really does help. But please keep your Dad's iron intake down. Please do not use the multi vitamins because of the B3 which is toxic to the liver. Use all the other B vitamins tho. Glad I could help. God bless.


lerie

Thank you - I did not know about the multivitamin - he is on an iron pill because of anemia - but I will be careful with the green's we serve - I told him today about the salt intake and we checked out his Carnation drink he drinks and it has 200mg - so we chatted about salt so I hope he is getting it - he took the lactulose today but it didn't seem to help with the slurring/slowness but I'm just keeping an eye on it.

Thanks again - I hope your feeling well today. I saw another post of yours maybe you could mix the lactulose with some oatmeal or yogurt? I have no advice about the timing because we are still working on that one at our house.

God bless you too:)
Hi pn16, The lactulose is supposed to go right thru you to rid the body of toxins because the liver can't filter everything anymore But he can not take it just once a week it won't work that way! Thats why he's exhibiting the symptoms he is. I know the lactulose isn't pleasant but it will definately help keep him from slipping into a comma & he won't have quite as many episodes of confusion etc. Please try to get this thru to him.The timing I use for lactulose is 1/2 hr. to 1 hr. after meals & at bedtime or 20 minutes before meals. Let me know the dosage he is on. My first dose of the day is too be first thing in the day to help with daytime sleepiness. His body will adjust. what doseage is he taking? mine is 30ml $ times a day. How are you dealing with all this. I know it puts a lot on you too because I see it all in my husband's eyes every day. It's really important you take care of yourself too to be able to help your dad. I'm here to support you both if I can,I'm here for you. Take care God Bless. Later....


lerie

Pn16 Thankyou for your suggestions. I'm going to try it.Have you ever tasted the stuff? Guaranteed the docs never tasted it! Actually its not that bad but for me it tastes to sweet. Thankyou. Later...My email is colin.b@rogers.com


lerie

Hey there everyone, New to this forum, found it by way of a response on another.
I have hep c, about 11 years now, my wife had been a heavy drinker for years, and last year the swelling began, by the time it began to recede, she had quit drinking, pretty much,though by the end she hadn't drunk anything for a few months, She had an unforseen complication. She had very bad teeth, she contracted a bacterial infection, also well known as sepsis. The sepsis has very few sysmptoms until it's almost too late. We had been at the hospital 2 weeks earlier, the nurses there din't like what they saw and told her that she couldn't eat until after they ran some blood tests. Well they never did, and two weeks later she suddenly died.
Liver issues can cover other issues. The body was so debilitated by the liver dysfunction that even if she had recvd proper treatment two weeks earlier she may have only possibly survived.

Be aware of these issues.

I'm in NYC and have had a terrible timeof it trying to get proper treatment. I have a combination of illnesses that makes my taking the combo treatment a very difficult decision.
I am on pain management as well, I was in a car accident years ago and had a failed spinal surgery. So my pain meds have to be ones that don't beat on my liver.

Good Luck to you and yours,
Be Well

ben
"...two weeks later she suddenly died."
 
What a tragedy, Ben!  I'm so sorry!  I don't understand why the blood work wasn't done that very day.  However, as you said, it may have been too late if the sepsis had already taken hold of her body.  Did she contract endocarditis, as well?  I know I have to take prophylactic antibiotics prior to the dentist or any surgery, due to hip replacements within the past 3 years.
 
I'm a transplant from N.Y.C. myself and have hep C (picked it up in NYC in the late 60s, diagnosed nearly 13 yrs. ago.)  Unfortunately, everything goes through the liver, though some meds are worse than others.  I take Lortab and 800 mg ibuprofen for pain.  You just have to weigh the benefits vs. the negative effects sometimes.  Have you tried treatment for the hep C?  I did when I was first diagnosed, but my white count plummeted, so I was taken off.  Now I have liver cancer and am supposed to start a new type of radiation treatment this month.
 
Best of luck to you!  Keep posting!
 
Connie in FL
Hi Tomcat, sorry to hear you loss. I'll pray for you & your health. later....


lerie

hi,  I am new here.  my son has been drinking since he was in high school and is now 47.  he would go thru 30 beers a day.  about 4 months ago i received a call from the hospital that i had better get there quickly as he was in a coma and they did not expect him to make it.  he was in the hospital for a month, came out very weak but made it.  after this time he is starting to fail again,  his ascetis is extreme, they have to pump him out about once a month.  He coughs a lot, has heart failure, edema, and the swelling.  he always feels better after the paracentesis (pumping) but how many time can they do this before it becomes perilous to his health.

Since I am in my 70s, it is very difficult to go thru this with him.  But I never gave up on him.

My question is, how long will this go on.  I know that no one has a chrystal ball but he has no quality of life left.  I worry every day that this will be his last.  Can anyone help me with this.  My mind is in a fog as I just buried my husband after taking care of him for 5 yrs with dementia.

Anyone out there has any advise would be glad to hear from you

 

 

Hi Chris,Welcome to the forum.Sweetie there's no way to say how long this will go on for. I have severe advanced cirhosis & have been in these commas with heart failure, kidney failure,edema & ascetis 4 times then stableized for 5 but am going back into liver failure according to recent ultra-sound. They gave me 2 weeks to live 9 years ago & I am now in my 10th year. After the second comma I was in it was only 3 days before I started again. Nobody knows why I have been stable for so long. So my dear nobody can really answer your question. I've seen some people go first comma & i've seen some go in a few weeks to a year sometimes 2 or 3 years. Then there are some of us stay longer so it's impossible to tell. My heart truly goes out to you Chris.This is heartbreaking for anyone but with your age,Taking care of your husband,& then recently burying him, well this is so much to bear. Sweetie if I may I would like to suggest maybe talking to your Dr. & asking to see a social Worker . It also seems you need time out. Time to look after your needs & to mourn the loss of your husband & to keep yourself stable. Time out does not mean giving up on your son, but sometimes we have to let go & let GOd. I know all this is of little comfort with all you've been through but please remember you can't be there for him if you don't take care of yourself. There are a lot of good people in here Chris & we will give you all the support we can. We will be here anytime. I'm sending you HUGS. Hang in there. you are in my thoughts & prayers. God Bless you. later....


lerie

hi lerie,  thank you so very much for your reply about my son's condition.  one problem that i did not mention is that he continues to drink, altho not as much as he was but even one is too much.  you are right when you say i need a time out.  but it is always in the back of my mind how is he doing.  I am so very glad that you are doing so well and have helped me with this.

I joined a non smoking group and with their help was able to quit  i figured i would post as the doctors do not tell you much.  just knowing there are others in the same boat is very helpful.

Right now he is doing so-so.  but every time I look at his wasted body i get scared.  i don;t want to bury my son.  but he will not follow anything the docs tell him too such as salt restriction and not drinking so much liquid. 

Thanks again for your reply.                 Chris

 

Hi Chris,Even tho all of this is in the back of your mind sweetie a little time out will be benificial. If you put things that interest you most this may give temporary distancing from the situation at least for a short period of time a couple times a day. Your son not listening about the sodium & alcohol he will fill up with fluid real fast all the time. Still no knowing how long this will go on for. Let me ask you this ,I realize it is your son but still. If he is not even trying to fight for his life, then why are you giving up your's. Your son made his choices very clear,& my dear lady you have the right to make your choices for you. I'm not saying abondon him, I'm saying find enjoyment in your life as best you can under the circumstanses.You can't keep worrying about him when he's not even trying for himself,or your health is going to suffer & you've alredy been thru so much. Please take a little time out & persue your interests just for a little while. I'm here for you anytime you need to talk.I'm sending you HUGS. My thoughts & prayers are with you. Please stay in touch. later....


lerie