Coleen47

I found out about 10 mo. ago that I have Cirrhosis of the Liver. I am seeing a Liver Specialist. I have my days where I do not feel well at all but other health issues may be part of that. I am taking 1 med. especially for the Cirrhosis and she wants me to take another but I am trying to get assistance from the drug Mfg. because it would be 2,400.00 a month for me and I do not get that much a month even. I do not have the jaundice so far. When I was in the hospital I had a tap done to drain fluid out of my abdomen due to my Liver not working right. There was a lot too but I have not had to do that again. My Dr. said NO ALCOHOL ever including non-alcohol beer because it does have some in it. No mouth wash or medicine like cough syrup that might have some. She wants me to get 2,000 mg of Protein every day which is supposed to help the liver. Also to cut way down on the Sodium no salt substitutes either. I recently had an MRI and an Ultra Sound both came back that no new stuff in there. I know some people do not want the diagnosis on their medical record but Alcohol is not the only thing that can lead to Cirrhosis but it is the most common. Mine probably is. 4 years ago my GP said I had a fatty liver but nothing else. Since I have found out that is a symptom in itself to get checked out. Reading up on some of the things I did find out that women are usually more pron to get it than men and those who have a fatty liver are twice likely to get it. So many people that hear you have it automatic think Alcoholic but there are some that get this that have never taken a drink. I am at a point where a number of friends and my family know. I was ashamed too but realized hey it is a disease and people get all kinds of diseases no matter if they helped them along by the way they live. It is sort of scary but my belief is that you are put on this earth for a reason and when that is done so are you and God will take you home. It doesn't hurt to pray though. I am trying to have a positive look at this and sometimes it is hard but I know negative thinking does not help. I am so glad that I found this site because there are people out there that have the same thing and they do not judge you. Most of my friends and family are very supportive except for my older sister who told me she had no sympathy for Alcoholics. I did not consider my self a real Alcoholic because when I quit I had no problem with any withdrawal at all. Do I miss it, yes I do. Especially wine at night. But I cannot do that anymore. One of my biggest problems is being able to get a decent nights sleep. Hope I may have helped someone by this post.

Coleen47

9 Replies

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  • Thank you for your post. And yes, you are absolutely correct. Having AIH doesn't have to have anything to do with alcohol. I was diagnosed almost a year ago. Went to the hospital for nine days and given all kinds of tests. I had to go because my eyes and skin we're yellow, my liver enzymes almost 2000, bilirubin - 20, Ascites. Any other minor sicknesses in my life I had always just taken herbal teas for, nothing ever stronger than occasional ibuprofen in rare instances and had hardly ever drank alcohol. In fact, I had lived a pretty holistic lifestyle and I work as a Permaculture gardener. However, at the time I was suffering from some major stress and had also just cleared myself of a major tooth infection in which my neck lymph glands had become hugely swollen. There is some history (although not much) in my family of relatives having different types of autoimmune diseases. The fact is; doctors are not sure what causes AIH. Once they did the liver biopsy they were sure that's what I had. I have since read that certain severe infections can be the cause, hereditary predisposition and environmental factors (like the toxins that are in our food and water no matter how organically we try to eat) can all be factors. So I definitely would not feel bad, or guilty. Plenty of people who drink alcohol do not get this disease. One thing all autoimmune diseases have in common is that for some reason your own immune system has gone haywire. A lot is now being investigated about inflammation and the microbial biome in people's intestinal system perhaps also playing a role. I hope your sister will come to understand this and not judge you. I am glad you have the support of other family members. 💕

  • Thank You. I wish she would but we have never been as close as me and my younger sister so even though she is my sister I am not going let her get to me. I could not call her on her birthday because I figured I would unload on her but maybe I should have told her exactly what I thought. This is not the only thing I am upset with her about and I did not want to bring all that up so for me it was better to just leave it.

  • FYI . The are well in excess of over a hundred ways to get cirrhosis, not just the ones most people think of such as alcohol , a Hep Virus, and fatty liiver (NASH or NAFLD) . Some being quite rare , some very few people have heard of. Some people it may be a mixture of things. There should be no shame whatever the reason, so hold your head high . Unfortunately the media is grossly to blame , as all they ever talk about are the 3 main reasons which is why most people think of them , and they do not show the most empathetic approach .

    The drug you talk about which is so expensive is it Xifaxan ( Brand name in. The US, known as Rifaxin in the UK). ? If it is and you are in the US you can get copay cards, and write to Alix the manufacturer , wh have a patient assistance programme. If you google coupons for it you should find the details .

    Sleep reversal or interference is very common in cirrhosis . Try a late night carb related snack , as our livers no longer help store energy well . 4 7 8 Breathing , and a peice of music and video called Weghtless , have been both proved to help . They can be pound on you tube . Weightless was written with this in mind , and has been produced and tested scientifically .

  • I have paperwork from Salix Mfg. and once my Dr. fills out her part I can send it in and they will see if I qualify and I may can get it free for 1 yr. I did look at where I saw our Walmart and I think CVS has coupons but even with those it is over 1,000.00 for a 60 day supply.

    I will see if I can find anything else and thank you.

    Coleen47

  • Hello Colleen- I'm Sherry. I live in Las Vegas Area (Henderson, NV, US). It's late here and I must try to get some sleep. Yes, what's that... However, I was touched by your post and wanted to extend my hand and heart to you. I am very new to this site and definitely in great need of support and lack of judgment. I will talk to you tomorrow. Take care and God Bless.

  • Thank You. It is good to know that. I live in east Texas.

  • I'm so sorry for your illness, I am more sorry that your sister through ignorance is being so judgemental of you. My OH has end stage liver disease, (through alcohol) and most of our friends and my family are massively supportive, however, some of his family has not been supportive at all and very judgemental. Surround yourself with people who love and care for you, and leave the rest to their own devices; you don't need them and they don't deserve your attention. Concentrate on yourself and keeping as well as it is possible to be. If you had a good friend in similar circumstances you would treat them kindly - make sure you treat yourself kindly as you are your own best friend. Good luck with everything.

  • Thank You and I will take your advise about treating me kindly. I have spent so much time doing that to everyone else that I guess I just did not realize I was not helping me.

  • RIght now you have to be massively self centred; you need to put your own needs above everyone else's; you have to give yourself the best possible chance. This is not being selfish; it is your survival. be good to yourself and enjoy every day. Eliminate people from your life who put you down, and only spend time with compassionate and caring people with your interest at heart. xxx

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