Jaundice and tremor question

[Juhles]

Do ALL people with cirrhosis become jaundiced? My mother seems to suffer all the end stage symptoms except this.

Also is there anything I might request from her neurologist regarding extreme hand, leg and now body tremor?

Thank you

[jojokarak]

No they don't I only had jaundice a couple of days I had it more after transplant when I was rejecting...

And the tremors sound like h.e. Symptoms is she not on lactose and rifaximin?

[Juhles in reply to jojokarak]

She’s on both! But she can’t hardly hold a glass at this point due to shakes then spills. She is still drinking too.

[jojokarak in reply to Juhles]

You may have to take her to your gp that's the toxins building up x

[Juhles in reply to jojokarak]

Taking her to UCSF Monday - thank you

[Hidden]

Jojo is right and it really depends the stage and what the cause of the cirrhosis is. If she was in full on liver failure rhan rhe answer would likely be yes but if not, again depends on what stage and what cause.

[Juhles in reply to Hidden]

Her med record just says cirrhosis with no staging. She’s an alcoholic so she’s been secretive about her drinking with her drs. Tonight my father said she is very weak. She is extremely confused-thinking a bad fire that occurred where we live one year ago just happened...things like that. I wish I knew her stage. I thought there was something wrong with me, trying to figure out her health status - until I found this site. Now I understand it’s normal to want to prepare ones own self for whatever might be coming

You all are amazing comfort thank you

[Wass71]

Hi, I'm not sure about others, but my bilirubin is high(I have PBC) and above the level considered to show jaundice in the whites of the eyes and yet I'm not too yellow, my colour is different than before, but mainly a very mild looking tan on my face and I have none in my eyes. In some lights I can see the yellow sort of under the skin, if you press it with your thumb instead of being pink then white there is more of a yellow hue.

I have just recently been listed for transplant, so have end stage disease. I suppose our bodies deal with it differently. When my sister was ill before she died (she was an alcoholic, and died aged 41), she was bright yellow and her eyes where almost orange. At that time she had alcoholic hepatitis.

She should definitely see a Dr.

Wishing you well.

[Juhles in reply to Wass71]

I’m so sorry about your sister. I’m glad you have an opportunity for transplant - and a new, healthy season of living. It’s so hard to watch loved ones suffer. Thank you for your answer...my mother is like you: a yellow hue in the eyes if I really look but otherwise no. But weak, HE, muscle wasting etc. I can’t tell her stage I wish I could- id feel emotionally more in control/prepared. That sounds so selfish but...

[Wass71 in reply to Juhles]

I don't think that sounds selfish at all!! The uncertainty of illness is super hard on the family. My husband feels guilty all the time, he has to make plans and get on with life, but knows by doing that he is having to cope with the uncertainty of how things will end up. Also when people are unwell not even Drs can give you exact answers, which is so frustrating for everyone involved. However they could explain a prognosis, which might indicate the path of the illness. It would be useful for you to attend all your mums appointments and have a written list of questions or concerns about how you feel things are progressing.

I'm afraid it's not good if she's still drinking, she may have a level of alcoholic hepatitis, which can resolve if the liver gets a chance, by stopping the alcohol. Having cirrhosis doesn't mean you will die imminently, but having advancing symptoms means she is clearly very unwell. I hope she is seeing a specialist hepatologist.

There are support networks for family/friends of alcoholics, Al Anon I think is one, I hope someone will correct me if I've got that wrong. But do an Internet search. You need support too, and to look after yourself, it's tough.

Wishing you the best of luck.

Take care x

[Juhles in reply to Wass71]

Thank you Wass71 🙏

[Smyally]

No I have cirrhosis and I am not jaundiced. Jojo is right the tremors sound like toxins building up in the body, so she does need to see her doctor. Hope things improve soon x

[Juhles in reply to Smyally]

Thank you she does have an appt Monday. I feel she’s SO sick at this point it’s scary

[Smyally in reply to Juhles]

I totally get it. It’s such a scary disease, but try not to panic. If things don’t improve soon, don’t leave it until Monday contact her consultant or doctor and get their view point, even if it just puts your mind at rest. Good luck xx

[Juhles in reply to Smyally]

You’re right...I don’t have to wait ugh it’s so hard. Thank you Smyally 🙏💕👍

[Hidden]

Hi juhles,

Sorry to hear about your Mom.

My husband is the one with cirrhosis. He only had jaundice at his very worse. The difficulty for your Mom is that she is still drinking which is continuing to harm her liver. My husband was hospitalized Nov 2015 in liver and kidney failure, managed to pull thru and quit drinking when the doctors told him he'd be back in the hospital or dead if he kept drinking. I am blessed that he finally was able to quit then. For those who are unable to quit drinking the future is not generally good, at least according to my hubby's liver doctor.

It is good that she will be seeing the doctor soon.

Best wishes to you and your family,

Mary

[Juhles in reply to Hidden]

I’m so glad your husband was able to quit and that you can have a life together. I wish my mother would be able to see a life beyond drinking. And thank you for your support. It’s so strange because in her mind she’s not an alcoholic at all and says she can’t understand why this is happening??

[Hidden in reply to Juhles]

Hi juhles,

Thank you.

This is difficult for families to deal with, or at least it has been for me.

For decades, I asked hubby to cut back and he might for a few weeks and then we'd be back to the same. He didn't quit until he was hospitalized with liver and kidney failure at age 67 in 2015, and the doctors told him how bad he had been and that he would be dead shortly if he didn't quit drinking. He quit while sitting in the hospital bed and has managed to stick to it. Of course his liver is still in bad shape, but it has improved a bit at each 6 month follow up visit and his liver doctor is pleased and says he can go on for another 20 years, hopefully.

I send you my very best wishes,

Mary

[Juhles in reply to Hidden]

That’s so wonderful that he finally quit - for everyone’s sake. My mother is turning 77 and seems completely disinterested in quitting. To think anyone could wish to be drunk every single day for years is crazy. You would lose so much important time and memories. I’m happy that now your husband can actually be present to enjoy life with you.

[Porphyriamaniac]

Hi Juhles, I'm sorry your mum is so poorly, it really is a horrible disease. My partners grandma never had noticeable jaundice even at the end, I looked for it as a sign every time I saw her and i put a similar post on here asking the same question. Her cirhossis was caused by fatty liver, I don't know if the cause makes a difference. Wishing you and mum all the best. X

[davianne]

Hi Juhles, nothing more to add to what others have said, except, that I had shaky hands, and couldn't write or hold a glass of water without spilling it. When I was diagnosed with cirrhosis, I quit drinking, and my shaky hands reduced a lot. Your Mum really needs to quit drinking to give herself a chance of recovery, so please try to talk her round to the idea of quitting, at least she might then have the chance of a transplant if her liver fails.

Please keep us all informed, Hoping and praying for you and your Mum.

David

[Juhles in reply to davianne]

Thank you. At this point I was thinking the tremors were irreversible but maybe it is just another symptom of the alcohol?? I will try. I keep thinking she won’t want to be so sick and that she will want to stop the alcohol just to feel better. Yet everyday she continues. It’s painful on every level - including the fact that I wish she’d care more about her family than to stay drunk and die. 😞

[davianne in reply to Juhles]

Juhles, I can tell you that giving up alcohol was the best thing I ever did. Within 2 weeks I felt so much better, and after 6 weeks my LFT bloods were much improved. Maybe she needs a bit of coercing to get her going in the right direction. There is help available from a GP to help her with detox, but she needs to be honest with them, and want to stop for the sake of her family. I sincerely hope that you can talk her round.

Liver failure is a horrible way to go.

Take Care,

David

[Juhles in reply to davianne]

It makes me sad because in my thinking she’d want to for her family (as you said) but she has drunk since I was very small and I have adult children of my own now. I realize it’s a disease tho. I DO think fear of a dreadful death might persuade her. I need to be a little more open/honest/strong but it’s hard - thank you for your insights!

[davianne in reply to Juhles]

Oh Juhles, I feel so so sorry for you. You are between a rock and a hard place, in trying to talk sense into your Mum, without locking her out. Just a thought, would she be open to reading some of your posts and the replies you received?, but this could shut her out completely. You are the only one who could judge her reaction.

Take care,

David

[Juhles in reply to davianne]

I tried once to confront her and she did cut me out. I went several years without her talking to me. In that time I feel my dad was stolen from my life and his geandchikdren’s. So now I walk on eggshells. When we “reunited” going on 4 years ago it was agreed I’d keep my feelings to myself. She’s a tough ol brood and thinks I’m too psycho babbly 🙄

In that time apart the decline was so extreme. Now her brain seems like Swiss cheese.

[davianne in reply to Juhles]

Oh Juhles, this is the worst possible position for you and your family to be in. Just to watch your mum deteriorate in front of you. I know from bitter experience that family dynamics can be difficult to negotiate, and see why you are just a reluctant spectator in your poor Mum's demise. Unfortunately, her reaction to caring advice from a loved one is all too common, and just goes to show how alcohol becomes the most important thing to an alcoholic. Not wishing to pry, but how do the rest of your family feel about the situation, and are you getting support from them?

All we on the forum can do is to support you, and offer advice when appropriate.

Please ,don't forget to take care of yourself.

Kind Regards,

David

[Juhles in reply to davianne]

My children are proud that I’m able to have a relationship with her after everything in my past (insert any alcoholic parent and child and I’m sure all the blanks can be filled in easily lol). They are sad that she’s choosing this but are very accepting. My husband is logical and has good boundaries so that’s been super helpful because I get emotional about it all :/ Your description of “reluctant spectator” soooo nailed it. My father and I discuss it and he loves her and feels this is what she wants so he’s “allowing” her to live her life. Ironically it’s taking a huge toll on his life. Today tho we went to look at a senior living home and I think they’ve agreed to try it out which will me a staff to help and hopefully a few more sets of eyes on the situation 🙏🙏

[davianne in reply to Juhles]

Hi Juhles, I'm so glad you have a lovely supportive family around you. I really feel for your poor Dad living with this situation every day, but they say love is blind. The stress of it will impact your Dad, and ultimately he will be the main carer for her if she continues along the path she has chosen. A senior living home will help if there are care assistants to help your Dad. Your situation is so sad especially as she could help you all by quitting the drink. I found that my drinking every day wes just habit, and not addiction, so I found it quite easy to give up (you never know until you try)

My realisation came too late, and I have stage 4 cirrhosis (compensated at the moment with good management), which is just as well, because at my age (72), I have been told that a transplant is "unlikely", except if my liver fails. I will pray for you all, and hope your poor Mum see's sense.🙏🙏

David

[Juhles in reply to davianne]

David thank you so much for your prayers 🙏🙏I’m so glad for you and all of those around you who love you that you have your life and your health. I pray your liver stays compensated. From everything I see or read, it seems those who quit drinking and follow healthy diets can live long and happy lives! 💕💕72 is not old at all these days. However my mother seems 100 due to illness. It’s sad to think of the possibilities tossed away. But yes I think if we can get them moved at least my dad stands a chance of feeling better. Caretaking is so hard on the mind and body.

[davianne in reply to Juhles]

Hi Juhles, thank you also for your prayers. My liver is behaving itself just now, and apart from the many symptoms cirrhosis throws at you, I am feeling OK. Yes, being a carer takes a lot out of people, both physically and mentally. I know this from personal experience with friends. They have to take on roles, they never thought they would have to. I hope you can get your Mum and Dad moved soon, to give your Dad a bit of respite.

Take care,

David

[jazzjam in reply to Juhles]

I think, sorry I don’t want to presume, that you are saying your Mum is alcohol dependent. (Your comment to davianne) My own thoughts and through personal experience of a close person. Some people, through no explanation just cannot stop or want to stop or feel they can stop even if it means destroying their and others lives. There has been so many tests, reports, studies etc.. done on this subject and will probably keep going until alcohol is prohibited, ( which I have no doubt it will be one day) as to whether it is psychological, physical, emotional etc.. I have no idea but all I can say is whatever happens I would doubt it was ever done purposely with the thoughts that they don’t care because I am sure she does but that dependency is bigger than we can ever imagine. I am sorry, I do hope she does find the strength 🌻

[Juhles in reply to jazzjam]

I do think there is so much shame so once at a certain point it’s hard to turn back and figure out how to undo physical and emotional damage. For many...but I wonder with her if she’s just in that category of won’t stop/like it/don’t care group. Like I said to David, maybe fear of a horrible death will help her to stop but for whatever reason, not the love of her family. Have you experienced this?

[Oldred]

I was treated for cirrhosis for a few years, I never went yellow

[Tashadog]

What do people take for painrelief in general,when you have liver complaint.

[Juhles in reply to Tashadog]

I THINK just Tylenol?

[Hidden]

is she taking thiamine tablets? im not 100% sure, but I believe they would help.

[Juhles in reply to Hidden]

I will find out - I did read a vitamin b deficiency can worsen the HE thank you 💕

[loveallpets]

If she is is as sick as you say she is, how is she getting her alcohol? She needs immediate intervention if she cares about her adult grandkids. You should toughen up and tell her, it's about time for her to act like a real grandma. Does she want her grandkids to remember her as a drunk old lady? Sorry, I sound so rude, but she needs a rude awakening.

[Juhles in reply to loveallpets]

Lol it’s fine - I’m always trying to control my feelings but inside I feel like your words! She drinks champagne and can have it delivered or coerce my dad -

[loveallpets in reply to Juhles]

Sit down and talk to your mom and dad and be firm and have a tough love talk to them. Tell her that most people, that have liver issues finally stop drinking to stay alive and ask her if staying around longer to be around the grandkids and you mean anything? Also explain to her how horrible liver disease is and let her know it's not too late but she must stop drinking. If she doesn't care, then she can drink herself to death. Also tell your Dad if he loves her he must stop buying her alcohol. Take away her resources. That's what I would do, of course get her doctors approval as well.

[Juhles in reply to loveallpets]

We have had that talk at various times and she says she has no problem?!?! Crazy. I wonder is that the diseasectakking or is that narcissism!?!