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Morgansmum
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 12/17/2005 8:00 PM (GMT -7)   
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

akrs
New Member


Date Joined Oct 2005
Total Posts : 11
   Posted 12/20/2005 1:30 AM (GMT -7)   
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.

Morgansmum
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 12/20/2005 6:31 PM (GMT -7)   
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 .

Morgansmum
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 12/20/2005 6:34 PM (GMT -7)   
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??

akrs
New Member


Date Joined Oct 2005
Total Posts : 11
   Posted 12/22/2005 2:48 AM (GMT -7)   
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.

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 12/22/2005 10:13 PM (GMT -7)   
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


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 12/29/2005 12:50 AM (GMT -7)   
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?

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 12/30/2005 2:00 PM (GMT -7)   
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


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 1/3/2006 6:07 PM (GMT -7)   
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

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/4/2006 1:41 AM (GMT -7)   
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


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 1/4/2006 6:16 PM (GMT -7)   
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:)

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/4/2006 8:22 PM (GMT -7)   
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


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/4/2006 8:27 PM (GMT -7)   
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


topcat139
New Member


Date Joined Jan 2006
Total Posts : 6
   Posted 1/7/2006 11:37 AM (GMT -7)   
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

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/7/2006 10:33 PM (GMT -7)   
"...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

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/10/2006 5:23 PM (GMT -7)   
Hi Tomcat, sorry to hear you loss. I'll pray for you & your health. later....
lerie


chrisinwis
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 1/29/2006 4:27 PM (GMT -7)   

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

 

 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/29/2006 8:05 PM (GMT -7)   
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


chrisinwis
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 1/30/2006 7:22 AM (GMT -7)   

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

 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/30/2006 10:30 AM (GMT -7)   
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


chrisinwis
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 1/30/2006 11:52 AM (GMT -7)   

Hi Lerie,

Man you hit the nail right on the head.  Even my doctor, who knows the situation has told me to get away from all this for a while.  His ex-wife who does most of the caregiving had just about had enough too.  He is sarcastic, nit-picks, seems like his head is always in the clouds.

when you go to visit and he is on the computer or watching TV he does not have the courtesy to turn them off. 

I suppose his condition is partially responsible for his actions but that is a lame excuse.

You have been an invaluable help to me and I thank you for it.  Reading the other threads has helped enormously also.  I am glad that I found this site and especially your replies.  I shall distance myself from him for a while and tell my daughter-in-law to do the same.  maybe then he will appreciate more what is being done for him.  Thanks again.

                              Chris in Wis


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/30/2006 1:09 PM (GMT -7)   
Hi Chris, now your getting on track hon! Being sick is no excuse for rudeness! If he is confused & delerious (hepatic encephalopathy) then yes he will do things & say things right off the wall. This condition cannot be helped. But what you are describing is very, very selfish & shame on him! Yes do talk to your daughter in law. Your daughter in law & you need each other now for supporttoo. I get cranky too when I'm not well with my liver but rudeness is never justifiable, nor is playing on other peoples emotions & using them. You nor your daughter in law deserve this.Distance yourself a little & don't set yourself up for this kind of abuse! Helping you helps me to sweetie & that's what it's all about.Take care & stay in touch. Later....

Valerie in Toronto ont. Canada
lerie


chrisinwis
Regular Member


Date Joined Jan 2006
Total Posts : 28
   Posted 1/31/2006 10:12 AM (GMT -7)   

hi Lerie,

I hope this last day of January finds you feeling well.  i think that I have it bad but when I read the threads of the forum members, i find solice in them and wish each and every one good luck.

My son has plans to go for 4 days with some of his cyberfriends fishing and as he says bar hopping.  I cannot stop him, nor do I wish too.  He says he is up to it but that is questionable.

He has paracentesis about once a month now.  Does anyone know how many times is too much or is there no limit on this.  I have read what the net has to offer on this disease but it is a crap shoot for each individual is different.  My prayers go out to you as you seem to be a lovely person who despite your illness will take the time for others.  God bless you and may you live another 10 plus years. 

                                            Chris

 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/31/2006 11:06 AM (GMT -7)   
Hi Chris, Thankyou for your kind words,you just made my day a little brighter.You have it just as bad as the rest of it sweetie. No-body deserves to go thru the abuse you are enduring & certainly not from a son whom thinks his own mother & wife are doormats. While he is away use the time for yourself to recharge . You & his wife are trying to care for him,you's worry about him,& he's going barhopping? Isn't that gratitude,love & caring on his part! I am glad for you & his wife tho that he is going away. Please use a few hours of this time to see how much you really want to be so involved with someone who treats you like dirt.I understand the way your torn in two by your sons illness, but please concider how little he cares about you.There's no love or respect on his part.You can't stop him & obviously he thinks every one is going to cater to him while he does as he pleases & makes no effort to help himself.It is a crapshoot for each individual.But please don't let him take you down with him. Do you have a good relationship with your daughter in law?You seem like a very nice woman too. & a mother who does not deserve this. My heart goes out to you . I have a son too I had to throw out because of drugs & alcohol some years ago. Now go do something really nice for yourself & then write me back & tell me what you did! My thoughts & prayers are with you.later....
lerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/31/2006 7:31 PM (GMT -7)   
Chrisinwis,
Welcome to the forum! I am my husbands care taker, he has end stage cirrhosis. We are in the process of trying to get on the list for a transplant. You asked about the paracentesis how long can they do it before it becomes perilous to his health. My husband has extreme ascites and they take any where from 6 liters - over 8 liters every 2 weeks, it may be slowing down now. But the answer is, it will always be perilous to his health because he is at high risk for infection every time they do it. My husband takes a antibiotic every week as preventative maintenance. As long as your son continues to drink any alcohol, he will not improve. The sodium is also a big issue. Lerie is so right you do need to take care of yourself and take a break! As long as he continues the destructive behavior, you and your daughter-inlaw cannot help him, until he is ready to himself. Is he driving a vehicle to get his alcohol? If he is, the vehicle needs to be taken away. His coordination is bound to be off and he probaly cannot concentrate very well. I do know the fear you are having when you look at him, my husband looks very mal-nourished and his muscle mass is diminishing before my eyes. My husband has had a hard time stabilizing the encepalopathy. I had to find acceptance, of the reality that I could lose my husband. By finding acceptance, I am able to make better decisions. Finding acceptance is a lot easier said then done. I have to hurt, I have to cry, and I have to pray for it!!! I am not giving up on saving my husband! I am going to fight this to the end, just as Mark is!!! I wish I could give you more comfort. I will be praying for you, your son and your daughter-inlaw. Bless you and please know that you are not alone! PRAYERS and HUGS!!!

Post Edited (TDT) : 1/31/2006 10:32:35 PM (GMT-7)

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