Hello everyone. My husband has been diagnosed with cirrhosis. He was admitted into the ICU due to jaundice and liver blood tests being out of control, on August 12. He spent a week in there. He has not had a drink since then and has said he will never drink again. While in the hospital, we were told he had alcoholic hepatitis, then a few days later the GI doctor said he had alcoholic fatty liver disease, and on Oct 7th, his primary GI doctor told us he has cirrhosis. Since he has been out of the hospital, it has been a roller coaster. He has ok days, bad days and very very bad days. His ascites makes him feel bloated. He has no appetite, has lost so much muscle, has no energy, and has started with early signs of hepatic encephalopathy. He is scheduled for paracentesis next week, has been prescribed a second diuretic to help with the ascites and a medication to remove ammonia from the blood to help with HE. He has no varices. He’s had several blood tests from Aug -Oct and each time his liver functions are improving.
I have several questions. What is the best way to manage his fatigue? Does it go away or will he always have it? Since he always feel bloated or full, and I’m guessing it’s from the ascites, and has no appetite, does he just have to force himself to eat? He is always cold. Some days he shakes from being cold. Is this normal? Does it go away? And he always has stomach pains. Sometimes they are so bad, it makes me cry.
These have been the worst two months of my life. I hate seeing him in pain and I don’t know how to make him feel better. I started giving him milk thistle tea and a liver detox pill (herbs) shortly after he got out of the hospital. Has anyone tried CDB to relieve symptoms or to treat this disease? We don’t know what else to try. We thought if he stopped drinking everything would get better. Any help or advice is greatly appreciated.
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Mls1973
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Stop the milk thistle and any other liver tonic now. It’s dangerous. He must only take the medications he’s prescribed by doctors. The liver processes most drugs and this is adding extra strain on his liver. The fact his liver function tests are improving is very good news. Getting the drug regime correct both in terms of diuretic for the ascites and lactulose for the HE will improve his quality of life and with time he may be able to stop the paracentesis. He absolutely must remain abstinent and follow the diet prescribed very strictly. Low sodium and high protein. Time is then the healer. The liver is a remarkable organ and by taking away the cause of damage...I’m assuming its alcohol from what you say....then he gives himself every chance of a strong recovery. Tiredness sadly goes with the territory and I’ve found that if I overdo things then I struggle with energy levels the next day. The only tonic for this is rest. I listen to my body and ease up. I eat slightly more carbs and slow down my exercise regime for a day or two just to recuperate. Everything returns to normal for me. Recovering from his hospital admission is a slow process. It’s taken some time for his body to deteriorate to the level you describe, it stands to reason that it will take equally long to recover. Following the medical advice, keeping away from alcohol, eating correctly and exercising as much as he can will give him the best chance of recovery.
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As far as cold and tired, I had anemia when my cirrhosis symptoms were at their worst. I was referred to a hematologist and ended up getting iron infusions. Obviously I don't know what his blood tests look like, but its worth inquiring if he might be anemic as well.
The Dr just ordered lab work for his ferritin and iron saturation %. Both came back high. He is ordering other tests. I’ll talk to the Dr and ask how those levels affect his symptoms.
Others have already posted about the detox and milk thistle so no need for me to repeat that.
The fatigue and feeling cold is par for the course with cirrhosis i'm afraid, but now he has stopped drinking it may improve as his liver function improves. Just keep an eye out for excessive shivering, that could be a sign of infection.
Food wise, eating little and often is the advice i was given. The ascites and poor liver function will suppress his appetite so its a case of just getting something in. So, little and often is the best way to achieve that.
Thank you. I did not know that excessive shivering could be an infection. He has only had that happen twice and they were days apart from one another. He has some fluid drained from his abdomen one night that we went to the emergency room. It wasn’t much but it did relieve some of the pressure he had. They tested the fluid and it came back negative. I’ll keep an eye out on the degree of his shivering.
My husband was simular last year. His sleep paterns all over the place and so cold he shook so i brought him some thermals and a fleece blanket to put over him on the settee. The liver does so many things, one of which is the bodies thermostate. As it heals he will feel less cold. His consultant said that its healing when you sleep, so i let him nap when ever he needed to. We were also told that coffee is beneficial in any form by the consultant. Abstinence a healthy diet (little and often at the start on less hungry days a glass of full fat milk or full fat yoghurt did the trick between small meals) short walks helped to get a routine and build up his muscles and sort his sleeping out. I walked with him as the water on his legs made him unstable. Hes out playing golf today! He will be tired later and probably kip this afternoon and go to bed early but i would never have thought he would be able to do that a year ago. He has tired days, maybe one or two a week but otherwise almost normal. He also nolonger feels cold. We stick to the low salt diet and all the advice we have been given. It took time and a lot of hard work from both of us. So i wish you luck, things will get better it just takes time xx
Wow! He’s playing golf. That’s great. Did he have the fluid in his stomach too. If so, did it have to be drained periodically or did he just use diuretics? How long did it take to go down?
hi, yes he just used diuretics (thankfully) as he only had a small amount around his waist, it was mostly in the legs. He started taking them nearly 2 years ago but was still drinking. Things got worse and they put him on the maximum dose for nearly a year, the dose has now been reduced. He still gets water on his legs if he over does things. It took a good 6 months for the majority to go when he was on the maximum dose of spironolactone. He also had suspected HE and was treated for it but it turned out to be a urine infection that was causing his confusion so we stopped the HE medication. It has now been 8 months since he stopped the drinking and in that time he has got stronger, after the first month he was a different person. He now has been given a life expectancy of 5 to 10 years, last year they said 18 months! But with determination, exercise and a good diet things have turned round. He didnt want a transplant so he chose to stick to the strict diet, little and often, high protein and carbs, bowl of porridge or oatmeal with honey before bed as it was easy to eat, he woke up with a lot more energy and not feeling so sick. Perhaps a dietician can give you some advice.
I hope you get some good news soon and his liver functions carry on improving. It takes a long time but the good days do get more frequent. My husband did 6 miles walking on the golf course yesterday and slept through the night.... he was so very poorly last year. Wishing you and family all the best x
Hi if his lfts are improving then that is encouraging. I went through the same a couple of years ago along with pneumonia. I lost 77 pounds and a lot of muscle. It took a good six months to recover and start getting back to a healthy weight. When I left hospital I was givven a supply of high protein drinks like fortisip. I was also advised to eat little and often to keep energy levels up. Also they strongly recommend night-time snack with a high energy content - e.g. toastwith a bit of honey or a couple of biscuits or cookies as the stores of glycogen in the liver get depleted while you are sleeping. Wishing you and your husband all the best
I’m glad to hear you are doing well now. That’s encouraging for me. I start giving him protein shakes two days ago. The first time he drank it was at night. He drank 4 ounces with his meal. And he woke up much better. Yesterday while he was at work, he at small meals which are practically snack sizes. He was able to work from 6am - 3pm. He was tired when he got home but he did say he felt better. I think you’re right with the small and often eating.
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