WOW! I was reading all the replies from some of you to ZI- R, Asking if it was okay to drink non alcoholic beer, I can’t believe how rude some of you were to this member! You people assumed this person is fake and even suggest he has head probkems! This is one of the reason I don’t post much, not because people have been rude to me but to others and to me it’s totally inaceptable! This forum suppose to be to to help each other and be curtious since we are all in the same boat! Richard, snootie and Phoenix you should be ashamed of yourselves! Haven’t you learned anything from getting a second chance? I guess I don’t have tolerance for rudeness!
Dizz
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The 3 gentlemen you mention are 3 of the most kind supportive people i have ever met on a forum .they have been all the way to hell and back because of alcohol they offer support and advice to many a person on this forum with there knowlage and experiance with liver issues they spare there time to help people i dont see why its a shock to see them respond like this .they dont play games they are honest and straight people if it was not for alcohol they would not even be on the forum .and im sure if they could go back in time they would and never touch the poision . Is it any wonder they dont want to encourage a person to drink again .its like asking a survivor of a shooting incident does he want to play with a toy gun to see what it feels like .and yes pass me the pop corn but not alcohol or any drink that pretends to be alcohol either .
First of all, I wasnt at all rude to Z1-R what so ever. We have had numerous trollers on the site lately that come on here to stir the boat. There was a very good underlying reason as to why the assumption was there to think that Z1-Rs profile was not authentic at first. One that was discussed with the admins as well. Since you are unaware of the back story you should not speak to something you dont know the facts on. I had merely made a comment that before the conversation turned into a back and forth spitfire and arguing commenced unnecessarily that the authenticity of the post should be clarified. Once Z1R responded to say it was I never said another word. Not sure what in that was out of line whatsoever.
I give tons of support and answer plethoras of peoples questions on the forum and private messeges everyday. Not a single person can deny that fact so please dont ever say I should be ashamed of myself for a comment I made that had a strong backing to why I said it. Again, nothing I said in the only one comment I made was against Z1R at all if you care to re read it. Like Richard I have also messeged Z1-R and explained the circumstances behind it and to ler him know my comment was not against him and to put a step back in the right direction.
Please in future if you do disagree or dislike something ive said then messege me and address it. We are not all going to agree on everything that comes up on this forum and that makes for healthy debate. That in no way means that my disagreements with people equal my lack of respect for them in any way shape or form. It is simply a disagreement. I dont appreciate you making a public post naming me and declaring a shame I should feel for trying to prevent an argument from commencing on the forum. You can disagree with the way I went about the post yesterday and you are entitled to do that and i think ive responded to that accordingly here. And this is me disagreeing with the way you went about this.
That’s fine I don’t have a problem you disagreeing with me! All I’m saying is that before you accused someone of trolling ask questions if you are really concerned! I don’t know you to make any assumptions, all I know is that i read the comments you, snootie and Richard wrote to Z1-R.... you May be the nicest guy in the world but you were rude to this person and that’s all I’m saying! I also notice that a few people here are a clique and that’s fine but you should make everyone feel welcome no matter what!
Is it acceptable to receive abuse in PM? It is possible that Z1-R has residual HE and he is in a state of confusion around his transplant. I do not think that so soon after a transplant, alcohol substitutes should be considered. He is best advised by the transplant coordinators.
For me personally, I would prefer a liver forum that does not advertise the alcohol industry products.
I dont think they meant any offence .i think there have been some strange fake profiles about on here i saw one the other day wanting people to send money i thought that was strange .i hope all this gets sorted and everyone calms down again .lifes too short for misundetstandings to take pride of place .we all need support liver disease is horrible no matter what the cause .
Exactly the point CountryWalks. The people in the world that do things like that, using support groups for their own financial gains or advertising are the ones Richard was referring to when he said " sad people". He was never and would never say that a member in need is sad. NOT EVER would he do that. His comment was taken completely out of context. Again I think our reasons for being weary were justified and it was in a protective heart of the forums interest however, for risk of turning away an authentic member with a legitimate question obviously the tact and approach will differ in the future. I give support to people because i genuinely care. I have no motives or malices. If i could cure us all and make the need for such a forum a thing of the past I would. I think we can all share that value.
Youve put that perfectly pheonix and i think more should be done to raise money for the liver trust and provide more awareness and support for future generations about this horrible cruel disease that people know so little about .1000s of lives could be saved . The gps need more education about liver disease and more training and maybe have fibro scanners in there practices .people with cancer have many more help avenues to go down than liver patients and there familys .
Interesting you say that Countrywalks as raising awarness, funding, and commencing meetings with all the important people is exactly what Snoutie and Richard spend countless hours doing behind the scenes and outside this forum.
There are some amazing things being done for the cause that these two men are responsible for that noone even knows they are doing. Jim and his wife are also another incredibly active group in the fight and so much of what is going to change for the better in the years to come will proudly have their names embedded in its foundations.
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Thanks for pointing that out Phoenix. If anyone is interested, this is a study about how the alcohol industry uses the internet.
Hi Pheonix, I agree with the above and also with some points you made on another thread which I wrote some replies on and don’t want to mention here it’s always great to hear people do stuff behind the scenes. However, these people could augment such work by being a bit nicer and approachable online. You disagreed with my comments elsewhere as did Rich, and I respect both your views highly, but you did it in a nice way (as did Rich) and as a result it had the desired effect. I’m afraid others could be more approachable. Take it easy all and be nice.
Lucdizz, I agree with you, I have to say. I am shocked to read some of the threads here and the assumptions that have been made. It is not supportive to suggest people are sad, need psychological help or anything else for that matter.
Many people with liver disease may well have autoimmune diseases and be able to drink non- alcoholic drinks as well as alcohol for that matter. There are also many other diseases, such as Gilberts and haemochromatosis and others which I can't recall which lead to liver disease. Equally well, some people who are supporting people with liver disease may also want to find the answers to these very same questions.
This board used to be a very pleasant place to visit, but lately there has been some unpleasantness, which in my view should not be happening.
If people choose to write little about themselves that is their right. As far as I know admin have not been sacked, so surely it is for them to decide if a member is genuine or otherwise.
We are here to offer support not judgement. People come here usually at a low point and whether or not we agree with them, we should offer support and kindness. We must all remember that on average a dozen people join here a day and many choose not to say much about themselves, they can't all be spammers or robots!!!!
I do hope that if anyone chooses to respond that they can respond in a kind and positive way, since I feel that that is what I have tried to do. 🙈🙉🙊
Thank you and this is exactly what I mean! Give people the benefit of the doubt before passing judgment! My liver transplant was not related to alcohol but it doesn’t give me a reason to put down the ones they did, bottom line, This is no place to be rude because as you’d say we don’t know what the other person is going trough!
Unfortunately there is often no “nice” way to tell people what they don’t want to hear. Having people who are able to pass on those messages rather than deal in platitudes is a strength of this forum.
You are quite right in your comments, and I have since sent ZI-R a private message explaining the reasons behind these comments and offering my sincere apologise for this error.
What has helped a lot if that ZI-R has now added some information to his profile which I find really helpful. I can totally understand and respect a person wishing to remain anonymous, but I find it does help when responding.
I completely agree with Lucdizz and it was a good time to be reminding people of the reason for this forum - to help and assist people with concerns and queries in order to help them through difficult and challenging times.
I thought the original question in the post by Z1-R was one relevant to anyone who had had a transplant, no matter the reason, but the response from some was very personal and read like a personal attack.
All credit to Richard64 for replying to Lucdizz in the way he has, and it will be interesting to see if Snoutie and Phoenix will reply as well in any kind of a similar vein.
I hope that this episode will be learned from and the discussions will be less personal and more supportive and friendly than some recent threads. Back to what it used to be like.
Thank you very much Steve, they really don’t need to answer to me but maybe apologize to Z1-R if they want! I do appreciate your message and so glad we are in the same page! Unfortunately I have an appointment and don’t have time to respond to others but I’ll be back later! 😄
Phoenix has literally been a guardian angel for me. He’s taken time out of many of his days to fully explain things to me that doctors didn’t even want to take the time to do. He’s gone out of his way to do research and try to link a lot of my symptoms together to help me get a diagnosis. He’s a very kind hearted individual and I don’t believe he would go out of his way to be hateful or hurt anyone. He’s gone above and beyond for me and I don’t have anything but great things to say about him. ❤️
Treat everyone with politeness and kindness, not because they are nice, but because you are. This is my motto Ajo13 😊 thank you I do appreciate your reply!
As a member of this forum for sometime now I have received and been helped by many genuine kind informative people this site really has been such a help and I so hope it continues but I’ve got to say that rudeness is creeping in and becoming a bit of a problem if we have concerns regarding someone on the site shouldn’t we simply report our thoughts to admin and leave it at that?
I don’t want to leave but if the site continues on this destructive path I will be forced to
Hi 1football, I remember you very well and I’m sorry you feel that way, as one of the member said, some people come here to stir the pot but I can assure you that’s not my intención, I’m all about kindness and I’m also a great God believer! I believe God gave me a second chance and i take it very seriously and try very hard to be kind to others! I had a hard time on my first year post TP and always wanted to post my problems but to be honest I didn’t feel comfortable doing it because of a couple people attitude! For the most part, all the people I have talked to here are very lovely people, very helpful to say the least! Thank you and please take care of yourself!
Hi. I think sometimes replies may sound a little harsh in certain situations such as thinking it might not be a genuine post. Richard did apologise for any confusion and advice was offered. Perhaps some sort of guidelines in how to handle these situations would be helpful. We do need to know if someone is insincere as we don't want members taking alot of time trying to help. I think we have to be cautious with 'trolls' also as they might be vunerable. I realise this sort of behaviour can be extreme though. It really is quite a difficult one. I do see that members do try very hard to help each other with some having a wealth of information and links they take the time to share in the hope of supporting others. Hopefully everyone can move on (Alf👍) with no bad feeling.
Thank you for replying to my post and just si you know I don’t have any bad feelings toward anyone, if I do wrong to anyone on here I would appreciate it if someone set me straight! We are all grown people so we should be able to speak as adults without getting all our feelings hurt unless someone is completely out of line! If I hurt some of you members feelings please accept my apologies! Peace ✌️
Completely no suggestion of you having bad feelings, I meant generally. You made a valid point and I have total respect of that. Certainly no apology needed. Best wishes and yes peace.
Thanks for posting Lucidizz. You do make a very valid point here. It just goes to show how our comments can come across. The fact that you found those to Z1R to be rude should send a bit of a message to all of us when posting. What we may say with the best of intentions may not always come across in the way intended or may leave someone else uncomfortable. Be careful out there folks. Sometimes, it's not what you say but how you say it that counts.
Thank you Christian, I do appreciate your kind words, as I told a member I didn’t do this to stir the pot lol, I’m a very outspoken person and I felt these guys were rude to Z1- R because in my eyes they were and that was it! I never said they were dirt bags stupid or anything else, I couldn’t do that it’s not my style. Have a great day 😀
I personally have felt that a small group of people on here have set themselves up as "gurus" whose words of wisdom we should all grasp gratefully. I don't like the feeling that the group is dividing into "leaders" and "disciples". Only those with a medical background have the authority to speak judgmentally and definitively on liver health. This group seems to be losing its ethos of "we're all in this together". Furthermore, I personally intensely dislike being talked down to.
Thank you for you post, as I said before, there’s good people here but there’s some that me uncomfortable, you are right we are all in these together and going trough the same thing with our liver problems and it shouldn’t be any time for anger since we are all very lucky to have that second chance! Thank you again and have yourself a great day! 😀
Lucdizz,
I have to say that I find your post calling out three of the most supportive and knowledgeable members of the group extremely ungracious and rude.
Did you even read what Phoenix wrote? Nothing about it was rude. He was simply saying the account and post should be verified prior to a response to avoid another battle on the forum. I personally see this as a protective measure to all members here, including the poster. There was nothing malicious or rude about it in any way shape or form. I came onto this forum a few months ago very scared with no knowledge. Phoenix not only helped to educate me, push me to get my provider to order the appropriate tests, and to set my mind at ease. He was literally willing to do anything he could to help and ease my mind. Every day he spends time on here going out of his way to help pure strangers to increase their knowledge, answer their questions, and calm their fears despite how he himself feels on any given day, never asking or looking for anything in return. He is truly one of those most intelligent, caring and generous people I’ve ever met.
I personally haven’t had any interactions with Snoutie or Richard but I see all the advice and support that they unselfishly give to all members of this forum every day. If my children grow to possess half the qualities of those three men I’ll be happy.
You mention you’re a god believer and take your second chance very seriously and try to be kind to everyone. You should really learn to practice what you preach. It would seem to me a more appropriate use of your time in this instance would have been remind the member your referencing right now of the same, to be grateful and do whatever they can to protect their second chance and not cutting down others...
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Thank you Interested.
As for a future life, every man must judge for himself between conflicting vague probabilities. - Darwin.
I agree that Pheonix seems extremely kind hearted & knowledgable. As someone supporting someone with liver disease I'm really grateful for this board & the expertise (Katie - you are a great source of info to me too!). However, after a post the other day where I felt that CoconutWater was unfairly attacked (not by Phoenix) I felt saddened - my husband doesn't use this board but I'd hoped he could turn to it if he ever needed it. He would be completely turned off by those sort of posts. It is a great site mostly, it helps you feel less isolated. Live & let live, people are allowed to have different opinions. And genuine trolls - stay away!
You are absolutely right about Coconut being attacked the other day! I went back and re read all the post and I couldn’t believe how snoutie was harassing Z1-R, I’m not questioning thiese guys intelligences like interested329 talks about in her post! I guess she/he believes that intelligent people can be rude, clearly she/he is part of the clique... I’m done explaining myself I said what I needed to say and either you agree or your don’t but let me tell you something interested329, You don’t question me about my believes! God is the only one who can judge me! Definitely not You! Have a nice day supporting hubby, thank you for your reply! 😀
Wow, someone who likes me 😀 I don’t think I was being attacked as such, and I’ve had PMs from Rich64 and Pheonix, both nice, helpful and positive people.
Ha ha, I like what you're trying to do in terms of trying to prevent people developing liver disease through alcohol as much as I admire people who have suffered/suffering end stage liver disease or transplant & are lobbying &/or supporting people here. I'm glad you didn't feel attacked - some of the comments seemed a bit personal to me - like insinuating you were Z 1-R. It just made me uncomfortable as does commenting further on this thread so I'll go 😊
Now you mention it, I do have an issue with the 2 posters who said I was Z1. I’ve already praised a few members and I will continue to do so. However, I’m yet to be convinced how one gentlemen in particular helps behind the scenes when his online tone is unhelpful to say the least. Maybe someone can enlighten me and make me feel even better as apart from this one poster, this is nice and helpful forum. I’m really sorry to be negative on this one point, but I’m struggling to understand what this poster does to help. I’m really hoping someone can let me know and we can move on.
In the interests of the board I would suggest taking concerns to the mods rather than ask for opinion here and inflame things further (& I'm not being rude but I really don't want to be a part of this line of questioning).
To assume I’m part of a clique would be completely inaccurate, especially when I’ve made it clear I’ve had no personal interactions with snoutie or Richard. I am simply stating the obvious, that those three men spend more time supporting everyone here without getting anything in return. I’m sure you yourself have benefited from things they have taken time to post here and methodically explain which just makes me assume you are ungrateful. You choose to pick apart one thread, however I would question if you’ve gone back to read any previous threads and responses by coconut that could have lead to that point, or think of the possibility that there could have private messages being shared that we were not privy to. I personally have gone back and find some of the posts giving incorrect advice or promoting things that probably should not be promoted. That can be frustrating especially if you’re spending a lot of time to correctly help and support members appropriately. Remember, there are always two sides to a story. Just as you exercised your freedom of speech to voice your concerns on the actions in the forum, I voiced my opinions of where I felt time would be better spent. I, in no way, doubted or questioned your beliefs, I was simply calling a spade a spade.
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Damn well put. It echos the point I was trying to make yesterday about not talking about something you dont have the backstory or facts to and to further that line of thinking, Z1-R and I had a nice chat yesterday in private messege about music football and a trip to Valencia. But Noone here knows that as they are to busy chatting it up about how rude I was to the fellow. When my " rudeness" wasnt toward anyone directly at all. Only God can judge apparently. Unless however, your the person making that statement then you can judge all you want. Im not judging people of faith either before you go gettin that just as twisted as you did with my messege on Z1-Rs post. Just not really fair to judge people and then turn around and say " only god can judge me" like some get out jail free card.
I wasnt rude to anyone. Why dont you take some time to read my replies over the last year. You speak of rudeness and kindness. Yet you made this post just to single out 3 people by name and bash on them. Your a hypocrit. I dont see anywhere in your replies to anyone on your profile where you have actually helped out a single member on the forum aince you joined it. You take and give nothing in return. I do see a few replies in the past where YOU were quite rude to Richard but i guess you dont count yourself amongst these "rude" people. Sorry you feel there is a clique here. An interesting word for a religous person to use isnt it? I guess most people on this site are in this clique you speak of since you clearly make the minority in your feelings ontoward me. As for the rest of the people who responded in kind thank you for acknowleding the countless hours and time some members here take everyday to be supportive and helpful to other people. Even when those members themselves are in ill health. Thats whats important. The everyday efforts and struggles. Someone here mentioned "gurus". Well the knowledge is out there. Go get it yourself. Dont look down on people for being educated and ambitious in their learning and strives for more knowledge. This whole post is one incredible piece of hypocracy. A bunch of people gathering to bash people because they dont like said people bashing people.
Its mildly ridiculous to say the least.
I have noticed lucdizz that you have spent all your time since yesterday on this thread and havent responded to one single member who is in need of help anywhere on this forum. In fact that rings true for quite a few of you on this thread. Its nice to see you have such bold comments for being people who take from this forum yet give nothing in return to anyone. You should be quite ashamed of yourselves about that. Glad everyone including the "clique of Gurus" is here for you to utilize when your in need though. You should be very proud of the way you use the forum so selfishly like that. Bravo.
If you think you can you intimidate me with your big words it’s not going to work so save your macho attitude for someone who cares! I have nothing to say anymore because as the saying goes don’t wrestle with the pig because you are going to get dirty and the pig it’s going to like it! Have a great day!
Intimidate you? Is that how you feel? Thats odd since all im doing is placing a mirror in front of you. Is it that you dont like how it feels to have what your doing to me done to yourself? Not sure what "big words" I have used here at all? Looking back at what I wrote its in quite plain English.
Thank you for proving my point about being a hypocrit even further though. Referring to me as a pig now? Perhaps consider how small the comment you initially attacked me for was in comparison to your behaviour on this thread? And it just keeps going on and on for you... Now you sit here and are resorting to name calling? Your facade of etiquette is quickly melting to the floor.
Im glad you have nothing to say anymore as this thread was ludicrous in the first place. Not that you had anything really to say from the start. Sorry you feel backed into a corner but you put yourself there not me.
Again thank you for furthering my points about you being exactly the type of person you sought to accuse me of being, even if you did prove them by accident through anger. Btw you can keep the proverbial mirror. I have a strong feeling youll need it in the future.
So I guess considering you started this thread with only one side of the story and even people you are defending that were ‘attacked’ think these men are decent and genuine people....this makes you the pig? 😊
Hahaha you would say that! The pig is always the one who argues over and over and hoping to get a different result every time! YES I started this thread by saying these guys were offensive so get over it and move on! You must not have a life but I do and I’m going to go and enjoy my Sunday with people I enjoy being around! You should try doing the same! God does not condemn us for speaking our minds and that what I did without calling any names like some of you! I got a second chance in the beautiful life I’m going to take advantage of it! This was not intended to be a fight and I already apologize so as I said MOVE ON! Have a good day! 😀 BTW- this reply is for interested329, I clicked on the wrong name but it concerns you to Phoenix and you can write another noble but I’m done with this since I have better things to do with my time. 😀
Lucdizz, I believe you were the one who threw names out first on two separate occasions here. I also did not intend to fight but to stand up for those who deserve it because of their daily efforts to help and to support someone who was there to support me when I needed it the most. It was also to point out that you are seeing one thread and not taking consideration to what other conversations may be going on which is extremely close minded. It’s also pretty close minded to think others may not have a life when you have no idea what’s going on in there’s or why they may be here. Surely there must be a religious forum you could move on to...
Im sorry Dallo100. This should have never gotten to this point. Its a crap flinging fest in here anyways. Im leaving it now myself as it is starting to get in my eyes. I am ashamed for letting this get under my skin. All this time wasted whilst so many people on the forum today are seeking advice to real problems. (Exits the room and door slams behind).
As someone who worked with alcohol/drug/both dependants I saw first hand how destructive it is. I worked by the ethos 'by whatever means' . The vast majority were in the position due to self medicating after being failed by Mental Health Services. There were times when straight speaking was totally appropriate, to some it would appear rude. My aim was not to be a sweet lady who gave platitudes and and sooth their furrowed brow. I wanted them to live!!! It worked! Yes it was an intense job. Their back stories would drive people to tears. Their behaviour drove people to want to see them locked up! Call it hard love, straight speaking but people on here tend to have the same objective - to care about and protect . Ironic that as a nondrinker I am on here with liver disease. I went off alcohol after a virus. My ex manfriend was a heavy drinker. He was diagnosed with a rare and deadly throat cancer.l had only know him a few weeks but I really liked him and said cancer didnt define him. He was very very fortunate. He had to be detoxed for a week in the hospital before his major op. I thought his heavy drinking was down to fear. He had under his tongue lasered. No drugs ,chemo etc would have killed the cancer. On the evening of his op he was visited by the surgeon and her whole team! 'We got it!!! He was in a 5% group who this happened to. He vowed he would never drink again, his life had been saved by this amazing woman. He didnt drink when he got home so had 4 weeks of no drinking. He then decided he missed the drinking experience, so bought non alcoholic lager. He progressed from this to low alcohol . He would not acknowledge he was an alcoholic! The drink made him happy and dafter at first. He was given his 3 year survivor but he began to change. I did keep mentioning this but it had no effect. I found his behaviour intolerable eventually. He considered a real bloke drinks 8 pints a day!!! Because he didnt drink spirits or wine he decided he was fine. I did have feelings for him but I guess his cancer battle took it out of me. My point is that the no alcohol drink was a gateway. It takes a courageous family to donate a loved ones organs. If someone receives a donated liver I would expect the lucky person to show reverence.Even if the liver disease was not alcohol related, surely its a mark of respect to the donor? In this PC world its easy to lose sight of the real facts. Transplant surgeons didnt just make it up about alcohol free beers etc are a no no. They are on the front line, wrapping up the reply in flowery language makes no difference. My daughter considered the Liver Prof I saw before Christmas was rude. I took no offence when he said I needed to go on a lowcarb diet as I was fat!- I saw it as him throwing down a gauntlet. I have lost 17kg since 13th December. !
I don't know about you Lucdizz, but I'm now sick to death of the arrogant caballe who now regard this forum as the place to strut their stuff and be rude to anyone who dares to question them. Until such time as the powers that be put them back in their boxes I won't be using this forum any more. If you'd like to, do email me at carolejanehaynes@gmail.com. Congratulstions on having the courage to stand up to those bullies
Darsmum100, you have a lot to offer this forum and the overwhelming majority of people here are approachable and positive. Stick around. I too am baffled by the motivation of one one or two posters, and I’m not even going to use their usernames or respond to them.
This whole post is a complete embarrassment to what the group is supposed to be about!! I really wasn't going to comment (makes a change) but I just wanted to remind you all why we are on here, support through some of the worst moments of our lives......
I don't get on with everyone and not everyone gets me and some advice I think is wrong and some I think is perfect but different situations call for different approaches....
I have to reiterate that there is 128 different conditions which effect the liver so we are all given different advice pre and post transplant according to our individual needs and some of the advice is we can drink alcohol within the advisory limits...
Why don't you all just realise if you don't agree with something just move on and ignore it no one agrees on everything which is quite obvious on this thread but instead of tearing shit out of each other say something positive
It's hard enough getting through a good day sometimes without having to come on here and read this please go back to fun, love, support and peace ✌️
And if anyone has anything they would like to talk about inbox me instead of doing publicly I would have the courtesy to do so but not much does apart from the hate on here
Smile ☺ x
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it’s always great to hear people do stuff behind the scenes. However, these people could augment such work by being a bit nicer and approachable online. You disagreed with my comments elsewhere as did Rich, and I respect both your views highly, but you did it in a nice way (as did Rich) and as a result it had the desired effect. I’m afraid others could be more approachable. Take it easy all and be nice.
Do most people with liver disease have anemia? If so, what kind of anemia.
Thankyou to all you Wonderful People. 
People 
So, why shouldn’t I be allowed to drive if I have Hepatic Encephalopathy?
