I hope you are all doing well today. Hubby was diagnosed with Alcoholic Cirrhosis two months ago after a terrible episode of bleeding varices. Fast forward to today, and as we are trying to learn all we can about managing the symptoms as they arise, your sharing has meant everything.
At onset of bleed, Hubby immediately quit drinking, is eating a recommended plant-based diet, but is now experiencing a maddening itch at night. I called our Gastroenterologist to see how this should be treated and hubby was sent for a full metabolic panel of labs again. The labs show almost all values are close, or within the normal/standard range. Any ideas on how this is possible with decompensated cirrhosis? He is still weak and fatigued, and I just don’t understand how labs can be so improved. Does this seem to be typical of cirrhosis? I’m STILL waiting for doc to call and review results with us, but am hoping some of you may have a possible explanation.
Sorry about your husband's diagnosis. Can l asked who recommended a plant based diet? Where is he getting his much needed protein from and an amount of good carbohydrates to give him energy? His muscles will be wasting so needs energy to be able to exercise moderately on a daily basis to help build those muscles back up.
Hi Laura, hubby had some episodes of HE and his doctor said to eliminate red neat and try to focus on veg protein alternatives such as lentils, with grains, cruciferous veggies and fruit. He’s been having smoothies with soy milk, berries and bananas twice daily which seem to be helping keep his weight stable. The reason given for eliminating meat (perhaps temporarily, I will ask) was that the meat can cause ammonia build up which can’t be properly processed through the liver, causing HE. Thankfully he is now walking moderately each day. So many new questions arise daily! For instance, Dr. Google said cirrhosis can’t return to compensated from a decompensated state yet it seems possible from posts I’ve read here. Well, thank you for responding Laura. It’s comforting to chat with others on this journey.
Google's pretty rubbish. Best info comes from the NHS sites , the liver trust and Richard Allen, a member of this forum.
Yes dump red meat but lean white meats such as chicken and turkey are good. Also fish.
Pleased he's walking. Even as ill as my hubby was, he kept up walking until he was hospitalised.
All the best
Laura
• in reply to
Good afternoon,
Has your husband had the opportunity to see a specialist liver dietician? Getting the right dietary balance is crucial in liver disease to avoid malnutrition.
regards
• in reply to
Hello! We have been following the dietary advice of hubby’s doc, but I have added a nutritionist referral to my list to request. Diet and healthy living certainly seem to be the most important things we can do. Thank you for replying!
HE is hepatic encephalopathy. It occurs when the liver is damaged and cannot remove the toxins from the body which build up in the bloodstream which can lead to brain damage, causing symptoms such as confusion and halucinations.
HE is Hepatic Encephalopathy. In ny husband’s case it was thought to be caused by ammonia build up from eating red meat. With his cirrhosis, his liver couldn't rid the body of the ammonia allowing it to stay in his body causing HE. Symptoms were confusion, extreme brain fog, unusual tiredness.
It is possible, as in my case, to go from decompensated to compensated. Like your Hubby, my bloods returned to nearly normal in about 6 months after quitting drink, and leading a healthy lifestyle, and have remained so to this day. I still have a lot of the symptoms associated with cirrhosis to deal with daily, but that, I guess is par for the course.
I can only echo what's already been said. When I was first diagnosed, my results were so bad that I had to be tested weekly. As things improved as a result of having no alcohol, test moved to monthly, then 3 monthly and now I just have to get them checked 6 monthly. A couple of my levels are still slightly raised (and might always be) but most are mainly normal. My diet is still a work in progress as I have recently been diagnosed with gall stones so have had to make a few more changes but definitely agree with Laura about carbs and protein with every meal. I was advised to eat 5 or 6 small meals a day and have a snack before bedtime. The only time I dont feel too well is if I go for hours without food. When the doctor calls, it would be worth asking for a dietitian referral.
And yes, you can definitely go from decompensated to compensated. Keep us posted with your husband's progress.
So happy to hear you are doing well! Your dietary info is very helpful I have added the nutritionist referral request to my list of questions when the doc FINALLY calls. Have a good day.
Levels show signs of improvement because fortunately you’ve chosen the right direction to go in..
No alcohol, and a good dietary intake. We’re all the same but so different if that if that makes any sense at all 😜...... It’s a real challenge deciding what you’re liver likes or dislikes!!, it all takes time.
Symptoms,... we all tend to get reminders now and then, all quite normal in liver affected people.
Myself I seem to bob along quite nicely, then on occasions I could feel lethargic, lose of appetite, itching, discomfort around liver and abdominal areas. On these occasions I call them ( time out) ha, I just tend to relax and it passes soon enough.
So one step at a time. Relax and take one day at a time.
One step at a time. Brilliant advice with this condition. So many unknowns and twists and turns, that’s all we can do is manage symptoms one day at a time. I’m so happy to hear that improved labs is indeed typical! Very little medical advice given as far as what to expect with cirrhosis, so your reply makes me hopeful.
Dear pettyboom you sound like you have done a lot of reading and talking to people to help your husband. He is very lucky to have you as support is SO important. Laura is perpetuating the myth that constantly circulates that you have to eat meat or fish to have a high protein diet. This just isn't true, there are lots of protein rich things you can eat that are not animal products and your husband is eating quite a few of them. His diet sounds healthy to me, protein and complex carbohydrates are very important for rebuilding muscle and maintaining energy (his liver cannot store glycogen any more so energy runs out fast) but it means constant vigilance and healthy eating. My husband and I aren't vegan but we try and eat as much plant based food as we can. I have alcholic cirrhosis too and mine was decompensated and end stage and is now slowly compensating and blood results and last US scan weren't bad at all so that is another myth busted. I too have fatigue and a host of other seemingly random symptoms that come and go but they all relate to a liver that isn't working properly, maybe it never will and we will always have to take great care of our diet and lifestyles for the rest of our lives.
If you are concerned that the diet is not balanced or suitable, I use an app that works out what % of my food each day is what food group, makes life much simpler. I have manually set it with the recommended target amounts of protein, carbs, fat sugar etc for liver disease and just plug in what I eat and what I plan to eat. It is on my fitness pal.com. Very useful. Wishing your husband continued improvement. Wendy
Wendy, thank you for your sweet reply! I must say, I agree that plant-based protein certainly seems to working here. I prefer a plant-based diet, but it’s new for hubby who much preferred steak and whiskey lol. Both gone now. Thankfully he’s really happy with the taste of the new dishes so the diet transition has been pretty easy.
I plan to ask doc again exactly which proteins hub should be eating and whether it’s necessary for lean meats to be added at some point. I’ll check out the my fitness pal too, sounds like it would save me all my scribbles.
Docs are busy people and usually don’t ring people unless it is vital. If you have a question either ring him, your GP or this Forum helpline. They are the best.
Ugh don’t we all know this! However he did say he would review results and call to go over with us. Of course we realize he is very busy and spends much of his day performing much needed procedures for other patients, so we will practice patience lol. Completely agree, this forum is The Best!
yes its possible. I am the same. doesn't mean that the cirrhosis has gone though, just compensating now. Itching should go eventually too if he sticks with it. good luck
So very happy to hear of your progress. Understood cirrhosis will always be there, but it’s empowering to know there ARE lifestyle choices we can make to live full lives. Thank you!
Sorry to hear about your husband, I am in two minds about blood work, i was having bloodwood for the last 8 years, LFTs FBCs etc, these were always out, it was last year when i was referred for another condition i have, do not make B3, this is when i had fibroscan, this was very high, which resulted in liver biopsy, I do not know, Doctor did say with better technology this is how my Cirrhosis was picked up.... the people on here are really nice and helpful, i play squash twice a week and have cut out lots of surgery drinks which does help, feeling tired all the time was getting me down, this has now improved, give your husband good food and try and do bits to keep you busy, works for me...... all the best Rob
Hi Rob, Yes with all my complaining about waiting for docs reply, where would be without the gift of medical technology? Wonderful you’re up to twice weekly squash! Hub is only just now walking a fair amount, but it’s only been two months and his body has been through so much. No liver biopsy done, just lots of scans and bloodwork , and esophageal banding done on the bleeding varices which also seem stable at the moment. Thank you for sharing your progress and well done on your healthy lifestyle.
sorry to hear about your husbands condition-I suspect I'm in the same boat-seeing the doc monday following full liver panel although I'm in reasonable nick so far-just mild brain fog occasionally and no fatigue. I do have occasional itching on the legs though but had this with fatty liver tbh so no major issue right now. My ALT was tested before xmas and was within normal range about 7 weeks after stopping drinking-it's now 4.5 months-we'll see what's what monday. Good luck with the diet I'm in the same boat trying to see what works.
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