Info on cirrhosis... anyone???

I am up with her now; she is rough, really rough tonight. I was just reading that one of her water pills states that it should be stopped immediately, if, or as soon as encephalopathy begins. I was concerned to read that as this is the water pill that was just increased while she is actually worsening..?? I suppose I should contact a dr asap about this. She is so bad tonight; she is not able to pronounce her words and she is no longer able to tell me where she is. I am absolutely in tears tonight. My daughter is having a sleepover tonight and I feel like I screwed up because I should have told the friends' mother about our current situation. I never once thought about the concept that she could pass away while the friend is here??? Mom keeps asking me if I brought the coffee and where my brother and my husband are sitting? I could make no sense of this since she was sittting her in her bed asking this. I am just not coping well tonight.... I just dont know what else to do to help her. I am scared. She hasn't had a bowel movement now in five days and she is peeing less than a cup a day ... I know these are both bad signs.

Hi Dan'sbrother,

I am usually on the depression forum, but like to read others though I very seldom post.  But I want to thank you for sharing your story.  I have lost friends and family to cirosis, cancer and other reasons.  I have been there when people were dieing.  And it is a comfort when they pass.  My first husband died of lung cancer.  I was there, as promised, holding his hand when he died.  I could feel an energy escaping his body, and a look came over his face that looked so young and vibrant.  Maybe that is what I wanted to see, I am not sure.  I also know that when a person dies, they can still hear for two minutes.  So I kept talking to him even after he was gone.  The pain was gone and it showed.  I will never forget or regret those prescious moments.  So I know how you feel when you say a heavy weight had been lifted off your shoulders.  It is hard to watch the ones you love, or anybody for that matter, suffer.

I can tell you still miss him very much and I pray for your strength to come through this period of grief.  There are no set time limits on that.

Hugs, Karen

'sigh' well things are getting worse and worse; hence my lack of presence on the forum. My mom has begun to have worsening hallucinations; she is now bedridden and tonight when I was preparing her for bed with her medications etc she told me "It is only going to be for a few more days" Sadly; I believe this. She has been having full conversations with my dad, whom has already passed away, and often tells me that he is sitting in the room with us... I almost feel as though she knows that it is not real.?? Nevertheless this has not left much time for me to get on here and post my updates. I must run now too but I wanted to quickly check in and say I think we are almost at the end and all I can pray for now is that she dies quietly and peacefully in her sleep without any further pains.

Confussled.

These forums scare me at times.

Because i have cirrhosis of the liver along with a few other chornic illnesses and because im so young and iv been told my liver isnt doing to good, reading the awful things that have been happening it just seems to scare me. And to be honest im not to well up on it, i just tend to agree with what my doctor says as he nos what he is doing and tend not to ask many questions about it.

Catherine__08 said...
Because i have cirrhosis of the liver along with a few other chornic illnesses and because im so young and iv been told my liver isnt doing to good, reading the awful things that have been happening it just seems to scare me. And to be honest im not to well up on it, i just tend to agree with what my doctor says as he nos what he is doing and tend not to ask many questions about it.

I'm sorry to hear the forums scare you. I think what we are discussing here is the absolute end of ones' treatment. In my mom's case she has never received any 'real' care for her condition and hasn't seen a doctor since her 20s and she is now in her 60s. It is a very different scenario when you have people who are seeking medical intervention. I have been told that many can lead an almost normal life with proper care. My mom refused that. She refused to try to defeat the odds. In Canada you cannot have a liver transplant when it is caused by alcohol so she saw no purpose to battling her disease.
If you are young, I don't know how young as you didn't say. You have a much higher chance of a near full recovery than someone further in life. Also; did you know that the liver is in the only organ in our body that can regenerate itself? So depending on how far the disease has progressed will determine how normal of a life you maybe able to continue. And listen to the doctors' advice but make sure you ask questions and understand everything. Knowledge is power!!!

confussled.

I am getting very worried. Her breathing patterns have changed and been very difficult to rouse. NO bowel movements and no urine output for the day. I am restless and tired watching her. It is amazing to see someone so immobile be capable of moving around and being so restless that she actually falls out of bed.
I have told her it is ok to let go...whenever she is ready. She keeps telling me a couple more days. I thought I was ready but.. I guess you never really are ready.
mY mom and i never really had a relationship. We have never told one another that we love each other and still not capable of it. We were never one anothers friend. Now i am wishing i could just get passed that and tell her I love her so she can die in peace. I Just can't seem to do it... i must though. . or i am sure i will have my own regrets when she is gone.

confussled, everyone's experience is a little different but none the less you will see breathing pattern changes. In a semi coma they often mumble (if there is any response at all) when answering a question but on occasion they will say a sentence or 2, they are sleeping 99% of the time and difficult to arouse at all. In your moms case she is definately in organ failure and will produce only a small amount of urine if any at all. Stools are virtually nonexistent. I will continue to pray for all of you.

Well; dansbrother; our doctor told us that this disease in particular is so different from person to person that there isn't much that they can say about what we should expect. My mom has fought her symptoms and downplayed them from long before she was diagnosed. She has had swelling and ascites for years before being seen by a doctor but yet; some people don't survive for two years after swelling starts. That is just one example. My mom has not had any bleeding from her bowels but has frequent nosebleeds. Not heavy nosebleeds but just enough for us to know that there is something wrong. We also noted that when she was urinating she was losing blood there. I never once seen blood in the stools though. I was giving my mom nutrient drinks too until we discovered that this worsens encephalopathic symptoms. We convinced her to eat an egg ( to bring up albumin) and banana (for potassium) every day and that worked as the best overall diet. She however started to fall apart as soon as she decided to stop eating. She has since been eating well again and her brain is working a little better but the rest of her body isn't following suit.
I really think my mom will just go to sleep and now wake up at some point but in the meantime she pushes herself each and every day to keep going and do what she needs to do to keep herself here. She is going through large regrets and keeps telling everyone "I was such a crappy mother" and I have never heard a swear word come from her mouth and wouldn't normally say crap if she had a mouthful of it. I am surprised by these personality changes but in other ways I think she is trying to express how bitter she is, how angry she is and also apologize for the life I had to lead as a child. I have already told her 100 times since this started that I do not hate or condemn her for it; I forgive her. I make mistakes as a parent too. Somedays she now just looks at me like I am not even there when we have these talks... so I keep saying it hoping that she remembers it.

1Shelly1 said...
confussled, I am so glad to hear that she has rallied some. You're right you just never know. You are a wonderful daughter and I bet she is very prod of you. Let's hope that she continues to rally.

It is amazing. She is almost completely bedridden now. She makes it the twenty feet or so to the living room in the morning and then again in the evening to go to bed. That almost kills her every time. She wants to keep fighting so since she cannot walk she is doing her leg exercises as often as she can while sitting in the chair.
Today we was pretty "out of it" I couldn't understand much of what she was trying to say. She is still eating etc. However; we also have another person in our extended family pass away today so that was kind of rough on her. This woman was like a second mom to her and she didn't take it too nicely.
She is in crappy spirits but want to keep fighting this and spend more time with her grandchildren. I am happy she is fighting it but at the same time I am not. I don't like seeing her suffer so much.
Yes; she is proud and she does say thank you all the time for all we are doing.

dansbrother said...
Confussied I take you are having a hard time with your Mother because you haven't posted in two days. I hope all is calm as calm can be with ESLD.

yes she is becoming increasingly difficult and time consuming. She is really irritable and restless. I think I am losing my mind.

I also haven't written because myself and my family have been quite sick trying to battle an awful cold while not making my mom sick. I'll try and write tomorrow. I'm sorry for my lack of.

1Shelly1 said...
confussled, do you think it would help out to get Hospice involved? They could at least give you a couple hours during the week to rest or have some of your own family time if nothing else. It sounds like you need the break and it would be a huge help.

No we don't want anyone involved. It has been agreed though that if she becomes any weaker.. unable to walk then we are going to be left with no choice. We are only finding it that much difficult right now because of us being sick and her rapid personality change. My mom has never sworn and here she is swearing... she also complains that she is scared of everything. She is always scared she is going to fall etc. We are doing ok though but we'll be better once these colds have gone away. urrrgh.