New here! Help me understand Cirrhosis... Please

Hi. I'm new here obviously and I am a care giver to someone with Hep C and Cirrhosis of the liver. I've really been enjoying all of these posts, and reading other people's stories. Look forward to hearing back from anyone :D

So my Aunt has Cirrhosis of the liver & hepatitis C. She abused drugs in her younger days and still tends to do so. I moved in with her and my Nana in order to be a care taker for her. She goes through odd phases. One day she'll be alert and be able to make some food, walk around, talk on the phone, hold a conversation, and act decent. But her stomach was SO swollen, hard, like she was pregnant. Her face was also swollen. But she's coherent. Then there are days where she falls asleep standing up, anywhere, any time. Then there are days of where she falls and can't get up, we have to pull her up. She looks like she has a dark tan although she hasn't been out in the sun for years. Yellow, and gray. It's odd! One particular night I hadn't heard from her all day (2 nights ago) so I went in to check on her and she was on the floor. She couldn't tell me how long she had been there but when I picked her up I realized she must of used the bathroom in her pants or something because of the stains on her shorts.

I had to have her lean on my shoulders and walk inch by inch to the shower, so slowly, she was falling asleep on the way. We put a shower chair into the shower and it literally took 30 minutes to actually just get her into the shower. I knew she hadn't been taking her lactalose (she's supposed to take it twice a day although personally I believe it needs to be more) and if she misses one time, she starts to get a little odd, and ends up in a state where she forgets it's important. I took her drink and added lactalose to it, and gave it to her while she showered. I had to wash her while she held onto me, she had no strength to stand up or sit down on her own. She had to use a walker to walk back to her room and it took about another hour to get her finally into bed. She slept all night and through the next day, waking up for maybe 15 minutes and my Nana gave her some Watermelon.

She eats poorly. No matter what I do or say she will not stop herself from eating like crap. Dumping sugar all over her cereal, eating a pie that was actually hidden from her. She smokes cigarettes and drinks sugary drinks. She gets no form of exercise.

She's come out of that state just a little bit but she's still completely confused, eating little and if eating at all eating odd combinations of food. She's just out of it. I have a feeling she will come back around in a few days like she was a few weeks ago. A few weeks ago she was doing like I said above, holding convos and acting semi-normal. Then falling asleep standing up. Now she's like how she is. Confused and lost and very weak.

It's really hard for me to watch my Aunt die. I have extremely fond memories of her as a child, and I love her with all of my heart. To an extent I am a little mad at her because she continues to abuse drugs occasionally, i.e. Xanax bars. She also tends to be extremely rude and mean to my Nana, who has devoted her life to taking care of her. But regardless I am here to understand. I want to know if these symptoms sound like the "end stage" symptoms. I would tell you what her doctors say but I haven't been around for that long, and she never stays with a doctor long enough to see any real progress or hear any definitive answers. I will tell you that the first liver doctor she found out that she had Cirrhosis from told her that she will die, that she is terminal, and the only way to fix it or prolong her life is by diet... but she will probably never change her diet. No screaming or forcing will change the way she eats, because she'll leave with another drug addict friend and come home with a big orange soda.

I just need advice. I want to know what to expect. Is she close to dying? Is there anything I can do? Why am I so angry? Is feeling this angry normal?

Thanks in advance

grn

Post Edited (greenknight) : 6/18/2012 4:36:38 AM (GMT-6)

Hello, Greenknight, and welcome to the forum. First of all, yes, it does sound like end-stage liver disease. Secondly, her Lactulose can be increased without the doctor approving it. Try giving her an extra dose and see if she's more coherent.

Has she ever received treatment for the hep C? There is no real treatment for cirrhosis, but its progression can be stopped or slowed by eating a very healthful low-sodium diet with no beef. Of course, from what you've said, she's not going to change eating habits.

She should be seen by a hepatologist at a large medical center that has a transplant unit. He may or may not refer her for transplant evaluation. Does she drink alcohol? If so, that must stop.

I suggest you read the information in the folder at the top of the page entitled Hepatitis Resources. It pretty much covers everything.

You also should check out the thread entitled Caregivers Sharing. You will receive a lot of info and support there.

As Angie said, you are probably angry that a person you love is so self-destructive and dying right before your eyes. It is normal to feel that way.

If you have any questions, please feel free to ask.

Hugs,
Connie

@ gk --

haven't heard back...you doing okay?

wanted to add a word about being out of it.

my partner had a liver transplant just over a year ago BUT for the entire year before transplant, when he was sooooo very sick, he was in and out of making sense. I hadn't realized how out of it he was til this year.

he has amnesia for over a year before the transplant...has no memory of small or big things...who came to visit, where we went, when he was in the hospital, where the doctor's offices are though we have been there a zillion times, etc.

and he has holes in his head that weren't there before, though he is mostly normal now. he has no map in his head, for example. where before if he'd been someplace, he could get there again. and me, i have a map in my head all the time...a sense of where things are, e/w/n/s and where we are, in relation to oceans, airports, etc...and so can get UNLOST almost anywhere in the day time. night is harder. thank you GPS. mike is lost all the time now. how odd.

Post Edited By Moderator (hep93) : 6/21/2012 9:21:56 AM (GMT-6)

GK, you are only 19? And you feel that you are caregiver to a druggie and a very old granny? You mention your Dad and Mom, but don't say if they live in your household? Do they?


If they do, then this is NOT your responsibility alone.



Could you tell us if the parents are there and are in reasonable health?



I am assuming this aunt is another child of your grandmother...a sister of your Dad or Mom.



And I am assuming that but for her age, your Nana is little but pretty healthy...after all she is living home and helping out her falling down daughter.



Some information:



No, they don't transplant folks who are drugging or drinking. But not for punishment. They only transplant those who are MOST LIKELY to stay healthy after transplant. They require a lot of a person to be ON THE LIST.



They have to be: strong enough for a major major major operation...this means heart and kidney have to be really doing well...they will make exceptions and sometimes do a liver/kidney transplant the same day, but that is unusual. This requires a letter from a cardiologist and nephrologist.



They have to be non smoking, non drugging, non drinking before transplant. Usually for 6 MONTHS before they get on the list!!!! Active abusers have to go to a program and get documentation from an AA sponsor or a counselor.



They have to go to a psychiatrist and get a letter than they are in good mental health and are likely to remain substance free and are mentally well enough to comply with a complicated medicine schedule that must be followed for the rest of their life.



They have to see a nutritionist to be sure they are following a good diet and are likely to follow a good diet after transplant -- low fat, low sodium, no red meat, lots of fruits and veggies...kind of a normal good diet.



They do cancer screening and must not have tumors in the liver that exceed 5 cm. If there is a small tumor they can treat that before the huge surgery.



They have to demonstrate they can comply with a complicated frequent doctors appointments....pre transplant you go often for tests and labs. After transplant you go more often for tests and labs. You can't be messing with your appointments.



Right now, it does not seem like you beloved auntie is prepared for a transplant. And so she will likely continue to get sicker and sicker.



This is too much for you to take on yourself. Your parents or grandmother must have her medical power of attorney to help her make medical decisions.



If she is drugging, that's on her. The rest of you are powerless to make her change. The only thing you DO HAVE POWER over is yourself. You need to go to school, work, stay nourished, get enough rest and learn from others mistakes that drinking and drugging lead to a really bad end.



Liver disease causes uncontrolled bleeding (from mouth/bowel) , hepatic encephalopathy (changes in mental state that are often negative/angry/confused -- lactulose helps with this to get the toxins OUT), loss of balance or bowels, yellowing of the skin and eyes, brown or coke colored urine, swelling of the belly (ascites), swelling of the feet and legs (edema), fluid in the lungs (pulmonary edema), coma, and finally death. Some have all these symptoms. It is truly a bad way to die.



I'm sorry this is happening in your family. Is there any chance you could live elsewhere as you are 19?



Best,

Mama Lama

Post Edited By Moderator (hep93) : 6/21/2012 9:01:45 AM (GMT-6)

Is the weight gain because of Ascites.

I have cirrohsis & just completed treatment for hepc. This womans condition sounds serious and my recommendation is an ER or hospital. It sounds like your heart is in the right place by wanting to help and please forgive my bluntness here, but if she chooses to continue not caring for herself you will only be able to sit by helplessly and watch her die a horrible death. This has got to be first and formost, HER battle for which your support would be a good thing. Remember to take care of yourself first because no else can do that for you (or her)

I hope that someday if my liver fails I will be able to get a transplant over someone like this because I am doing all the right things to save myself...no drinking, drugs, red meat, processed foods, exposure to chemicles, ect, ect, ect.

Be well,
Donna