End Stage Liver Disease

Hi, Tripp!  I'm glad you posted.  You seem to be coping pretty well, and thinking clearly about your future.  I totally understand about your cat.  I have 2 that are 18 and 19 and have been with me since they were babies.  They are becoming a handful to care for in their Golden Years, but they have been such a comfort to me during all my surgeries, liver cancer diagnosis, etc.  Since I live alone, they were the only ones here for me most of the time.

I pray that Ed will have a peaceful passing.  It really is too bad that he won't allow Hospice involvement.  They could be a great help to you, too.

Continue to let us know how you and he are doing.

ed and I have been together for 15 yrs this month. I remember him when he was so alive and vital. He was usually always tinkering in his shop or we were going hunting and fishing. It is so hard to see him this way. He doesn't get out of bed unless hes has to. He cant remember things for even 10 minutes. He cant even grasp the simplist expainations at times. When he is asleep sometimes his breathing is so shallow that you cant hear him or see his body move. The newest scary noise is, when he is sleeping, is a cross between a hiccup and a gasp. I don't know if he actually stopped breathing and that noise is what he makes when he starts breathing again or what. All I know it is scary to hear in the middle of the night. One of my biggest fears is waking up in the morning next to a dead man. I try to keep him as comfortable as possible and get him all the little snacks and things he likes to eat. Even that is changing because his teeth are falling out. So there are some things that are just to hard for his teeth. I dont know why his teeth started falling out. He had good strong teeth before he had his bleed out. He is on 2 different diuretics but his stomach has gotten so big that he can barely button his pants. His waist is really tight on him but the rest of the pants are almost like a tent.They have him on enulose, diuretics, morphine and prenatal vitamins. As he sleeps a lot during the day, he takes 2 different sleeping pills so he can sleep at night. He sleeps probably 20 out of 24 hours. Somedays I pray for it to be over and other days I pray for him to hang in there. I tried to find that site you mentioned ELSD how long but could not find it. If you have anymore info on where it is it would be much appreciated. Thanks for your help and support. I find if I come on here and unburden myself before going to bed I am able to sleep a little better. Get my doubts and worries down on paper(so to speak) then I dont lay there thinking and worrying about them. This site has been a god send.

Tripp, Unloading always helps. It is good to get things off your mind. That is what this place is here for. I'll be praying that God helps you through this.

one more quick note, after reading through past posts from others I can thank God that he kids are grown and moved out on their own. His Son doesn't come around much, I believe the main reason is he can't handle seeing his strong, vibrant Dad is this helpless condition. The smell Ed emits from his month is horrific and almosts gags you if youget too close. The dr says that is from the degeneration of the organs and nothing can be done. Are there any tests that I should ask the doctor about giving him or is he just too far gone. I feel for Taz and all the others. I think it is just the not knowing exactly what to expect and exactly how long it will be. My heart goes out to all my comrades in this forum.

Hi, this is my 1st time to post.  My husband has cirrhosis and Hep C.  He's been in the hospital once for a week.  He's on lasix, aldactone, lactulose, multi vit, vit b1, folic acid.  He has an appointment to meet with transplant team in 2 weeks, he won't be placed on the list for 5 mos., he has to be free of alcohol for 6 mos (it's been 1 mo).  He has so many drs., an Internist, Gastrointerologist, Heptologist, and Kidney.  He is very weak, will sleep 20 hrs aday, poor appeitate, unable to walk.  I give him 3 Boost a day and Juice with extra sugar and anything I can get him to eat.  He has received a shot of Procrit. His stomach is swollen, and becomes short of breath with any activity, he also has some bleeding from hemorrhoids. I'm so worried about him, I don't know what to expect.  The dr's tell me to take hime to the ER if I need to, but I don't know.  Should I keep encouraging him to eat more?  I move him around in a wheelchair, should I try and have him do more?  I can't leave him alone.  Thanks for letting me talk, any suggestions please.

Tripp, now that I have a little more time, I wanted to ask about SS.  I don't quite understand.  Was Ed approved for disability, but they are "holding" his money?  He is at home now, isn't he?  What if you get Power of Attorney (if you don't already have it), would they put you in charge of his money?  I know this happened with my aunt, in terms of her savings and investments.  The niece who was living with her was able to access her savings and set up a checking acct. to pay her medical expenses when my aunt went into a NH.  I also had a neighbor on SSI who was "slow" and his checks went directly to his wife.  I understand the problem, though, when you are not legally married.  Some states recognize common-law marriages, but most do not.

How is Ed doing today?  What about you?

Hi, Kat.  I'm sorry you are having to deal with this disease.  It would be best to start a new topic (just hit New Topic instead of Reply) to introduce yourself to everyone, so your post doesn't get lost in someone else's thread.  It is hemochromatosis:  "A rare disease of iron metabolism in which iron accumulates in body tissues.  The liver becomes enlarged; the skin takes on a bronze hue, and there are diabetes and frequently heart failure."  (Taber's Cyclopedic Medical Dictionary)  This is a separate issue from the hep C, although iron is not good for a diseased liver.  So you are right...there is a lot going on, and there's going to be a real balancing act.

What treatments are the doctors suggesting?  My best advice to you is to research these diseases as much as you can and become very educated about them.  There is a lot of information on this forum, so please read through some of the older threads.  The people here are also very supportive.

My brother was just diagnosed with end stage liver disease. I finally had to call an ambulance yesterday because he would never consent to go to the hospital. He has been living in my bedroom , sleepong on my chair This is ok because my husband died last year, but it is driving me crazy the smell the feeding the yelling at night.I saw him at the hosp and he wants me to bring him alcohol. I wont but I dont want to take care of him anymore. I already bought him a lttle house but he wont stay there. I think he is afraid to die alone. I love him and feel horrible. but
, but I cant take it anymore My Mom husband aunt all died last year of different thing I dont want to watch him die too

Ed is drawing his SS as widowers benefits as his own SS was not enough. After his wife died SS payed him to stay home and raise his son. Plus he received an insurance claim on his wife. Therefore he did not work too much. By the time his son grew up he didn't really have much of a job history and had problems finding work. When he did find work, he didn't stay at it too long. a combination of the alcohol and not being used to working he would always find a reason to quit. As for the insurance money he pretty much blew that except for the trust fund he set up for his son. He bought a house but he got a special type loan where he could borrow money against the house. He finally got in so deep on that he eventually had to sell the house. So now we live in a very undesirable RV park, it's the only one who would accept our 40' bus. SS said neither he or I could be payee at the time due to his illness being alcohol related. They said after being clean and sober for 6 months we could appeal that. Which we did and after talking to his current payee, it sounds like it might just happen. The current payee saves back a ceertain amount each month and sends the rest to Ed in weekly increments. As Ed and I aren't married they decided that Ed was only liable for half the rent and utillities. Being in the Senior and disabled program he is allowed to have $637. The rest has to be paid back in to the S&D program. The S&D program provides him with a paid caregiver(me) and got him into a health care program. So doing it the way we have it set up we receive $300 more than if he was not in the program plus his medical.
Ed is not eligible for liver transplant as his other organs have been affected as well. He has this really horrible odor coming from his mouth and the dr says this is from his organs that are dying. His organs are so far gone that there is nothing the dr can do for him. His mental state has been better here lately but that just means the enulose is working and his amonia levels are down. I was hoping that as he seemed better that he was getting better but the dr says no. One day he will go to sleep and not wake up.
I feel bad sometimes when I catch myself planning on things I want to do after he's gone. Like what stuff to sell...what to keep and what to give away. It makes me feel selfish and uncaring as he is just a few feet away and wanting to live. My family tells me not to feel guilty about it as I have to think about my future as well. I tell them, the drs were wrong before so maybe they are wrong on this time frame as well. Is it just wishful thinking on my part or could he survive for years llike this? He has had all the symptoms of all the stages except for coma. There for a while all he did was sleep and ate very little. Now he is awake more and eating 2-3 meals plus snacking. He is able to carry on a conversation and does not show the confusion he had for the last month. Could he actually get better? His dr says no but drs are not always right.

Tripp, I think it is normal for someone to make plans for the future, when they know that things may change drastically. I find my mind going there all the time, and my husband is know where near as sick as Ed. But, a person has to know how they are going to live, survive financially, etc. I continue to pray for you both. I'm so sorry that you are in this boat with so many others.

Welcome, SadinOC.  You might want to start a new thread by clicking on New Topic below next to Post Reply.  That way your post is less likely to be overlooked.

There have been some posts about itching.  Just go back a page or two.  Some get relief from lotions or prescribed creams.  Oatmeal baths also help.

I'm sorry that you are now a member of this club, but you will find a lot of info and support here.

Yesterday was one of Ed's really bad days. He had that "dead eyes" look like he had when he went to the hospital. He was trembling worse than usual and very confused. He kept demanding things be done that couldn't be done. Such as rolling up the window and yelling at his son about something. I would fix him food and bring it to him and he would stare at it or just fumble around with it. He finally did eat something later in the evening. He got very unreasonable around 8 and demanded that it was time for me to come to bed.

I thought that I was prepared for him to go, but after seeing him in the state he was in after breakfast. I realized that I wasn't. I ended up running to my sister-in-law and crying on her shoulder. She keeps telling me that there may come a time when I wont be able to care for him and will have to put him in the hospital. He will need more care than I can give him. I guess I am just not ready to accept this. I am hoping for another upward swing. Next week will make a year since his first attack and they said less than a yr. A month later, they said he woul not see christmas.

In what condition should I call 911 for him to go to the hospital? Last time was a bleed out. The dr doesn't believe he will have another of those. With that, he could not talk or move on his own. He could not control his body functions. Yesterday morning he was just one step above that. I know his amonia levels must be high again. Today he seems a little better as he has made a bathroom run and is able to manage the covers by himself.Also his odor is better today.

I am just so tired and sad all the time. I'm not usually a crier but I find myself becoming one now. Even crying over movies and such. Sometimes I just want to curl up in a ball and go to sleep and never wake up again. Don't misunderstand, I am not thinking suicide. If I wanted that, I could have done that long ago with the meds I have to take. Thats not an option for me.

Well Thank-you for letting me ramble on. It does make me feel better to get these things off my chest. I think part of it is "cabin fever" as the weather is too cold and nasty for me to work in my tiny garden. Once I can do that I will be in a better frame of mind. Thanks so much for being there.

Tripp, Just wanted you to know that we are here for you. I wish there was something I could say or do. My thoughts and prayers are with you always.