Nutrition at this stage of my condition ?

[Roxanism]

I have escaped from my encephalopathy prison for a moment as well as my seemingly perpetual state of indifference and sleepiness were looking the other way.

     I have found that when it comes to cirrhosis, even the healthiest diet that is good for me may not work for you, or what is working for me, is subject to change according to Lab results !  Can this condition be more complex ?
At least when I'm doing research (usually utilizing Howie's ) I feel smarter :)
   I am 66 now, have had HCV for 40 years,was a non responder to good old Interferon Rivabirin treatment over 10 years ago, on the LT list now, due to complications with refractory ascites etc etc.  

What I've found out based on personal experience over the past three months is that  the lingering condition of muscle waisting and weight loss may be the last thing to go. I have regained much of my strength and I eat like a piranha, I also have a bowel movement like clockwork within two hours after I eat. sometimes up to 7 a day ! My sweet friend Lactulose has something to do with this I think. The strange thing is that for two weeks  straight I will weigh from 119 lbs  to 116 ( I am 5'6 and my normal weight used be 130 max)
Then for the next two weeks, I will be weighing 123 to 119.  I should mention , that I no longer have ascites (Had a successful TIPS procedure months ago) Even the ankle and feet Edema is on it's way out as is my MELD Scores !
     The weakness remains. the muscle tone has disappeared. But any scratch will take weeks to heal and  I bleed easily with the Platelet found decreasing for  nearly a year gradually.
    I finally gave in and accepted an assistant to come 5 times a week to make are I don't forget  things. I've ran out of lists to remind me of what I need to do. My Albumin decrease has the Docs perplexed.  they recommend I eat more calories and not too much protein.

MAYBE WITH ENOUGH SUGGESTIONS AND PERSONAL EXPERIENCES VIA THIS FRIENDLY AND INFORMATIVE SITE  , I CAN COME UP WITH A PLAN OF HOW BEST TO HELP MYSELF IN THIS SOLITARY MIND STATE THAT IS A WASTING BODY AND A FADING MIND.  BLESSINGS AND A POSITIVE ATTITUDE TO ALL.

[zarmar]

Good info from Mike.  There is an organic gelatin, GoBio, that provides essential amino acids -  "excellent dietary and nutritional properties. Organic Gelatin consists of up to 84% high-quality protein. Gelatin contains 18 amino acids, 9 of them belonging to the essential amino acids. GoBIO! Organic Gelatin is fat free, cholesterol free and carbohydrate free. Gelatin can be taken as collagen protein for dietetic treatments." (from their website).  Make just like old fashioned jello you can eat as is or add to other foods. My son made it with cold brew coffee and a bit of molasses. It is an interesting addition to yogurt. It might work as a thickener for smoothies, too, but haven't tried that yet.  There is a product called Sun Soup, a freeze-dried powdered soup that Sloan Kettering and Mount Sinai have studied for selected chronic wasting disease. Very limited and not definitive data, but may be worth looking at.  Said to be pricey and not good tasting and easier to consume added to other food.  I am planning to query the HCV program at Sinai to ask if they have an opinion on it which I will share when I hear back.  Best wishes to you - z

[zarmar]

I agree with you on eating out for special occasions.  Life can be both disciplined and joyful IMO.  I check with restaurants ahead to confirm the chef is open to an off-menu request like mostly a mess of great vegies on a plate with no salt added from the kitchen. If not, I don't go there.  I ordered a side of french fries recently made without added salt and they were fine for me who craved great french fries in my former eating life!. It will limit which restaurants you can choose from, but good young chefs today are whole foods and fresh oriented and understand special requests are increasing in their business.  Can't do this so readily at chains or franchises where food is not made to order.

[Roxanism]

  thank you all so much for the very valuable input  and support !

[mhudnall]

From Pubmed, A recent study came to these conclusions regarding the:

Dietary Management of hepatic encephalopathy revisited

This study illustrates some new conclusions regarding dietary management of advanced live disease, and this is study was just published:
1. reduction of protein intake is not useful for hepatic encephalopathy
2. oral supplementation of branched-chain amino acids has a role not only for its nutritional effect in cirrhosis per se, but also for its effect in reducing the risk of recurrence of hepatic encephalopathy
3.alterations in gut microbiota develop in parallel with decompensation of cirrhosis, and modulation of gut microbiota may be effective for treating and preventing hepatic encephalopathy
4. prebiotics and probiotics are useful for this aim
5. micronutrient deficiency, which is common in end-stage liver disease has adverse effects on the brain and may either directly cause encephalopathy per se, or interact with mechanisms leading to hepatic encephalopathy.

So this study is saying, do not restrict protein, but do take BCAAs and definitely take probiotics and also supplements that you are deficient in - I have already posted some of those above.

I hope that helps,

Mike

[mhudnall]

Branched-chain amino acids, or BCAAs have great studies behind them as a source of protein that cirrhotics benefit from and tolerate well. They are valine, leucine and iso-leucine and you can get them at GNC.

Go to pubmed and check out branched-chain amino acids and end-stage liver disease.

There are other things that would help, for instance phosphatidylcholine for your cell membranes and N-acetylcysteine for glutathione replacement.

Also google mitochondrial nutrients - B complex, betaine folic acid, alpha lipoic acid, etc. because HCV beats up your mitochondria.

All that should be taken in consideration of any meds you are on though.

I hope that helps,

MIke

[Livelife777]

This whole thing with cirrhosis is a catch 22 situation.  You can do 1 thing to improve that, but then if you do that, you  hurt the other thing.  You get the picture!   I was on chemo a few years back, and boy did I lose my muscles and tone.  In fitness, so that was a big no no for me as you represent what others strive to achieve.  You need protein, to get rid of the muscle wasting, and yes, I know not good for cirrhosis.  Gradually I added in more and more protein into my diet, along with sound nutritional eating.  Used " Muscle Milk"
Alot of healthy protein, and tastes pretty good.   Instead of red meat, try and ha e chicken and fish, lottsa nuts, good grains such as oatmeal and rice, and even went heavy on the dairy.  Peanut butter is by far a quick energy source on 8 grain bread with honey.
Work out is the best thing you can do for body and brain.  Know it won't reverse HE or brain fog, but will certainly help.  In the old days we would have people with dementia, or Alzheimer's doing crosswords, reading, card games, ect.   The newest research is forget all that and get out there and exercise.   Best medicine for the brain.  It's summer, try swimming, walking,
Even walk the mall.
You sound in good spirits, and hope you can tackle some of those lousy effects of liver disease
Be well
...Kim

[hepcandme]

I eat eggs - as long as you don't eat them everyday, you're fine, I'm sure. Try to get some really fresh from the farmers market

and fish - fresh salmon is loaded with Omega 3 that is Great for brain function! King salmon - way expensive but oh so good

Some say that they never go to restaurants because of the added salt but I just love to eat out so have learned what to order (salad with no dressing, lemon on the side) or brown rice with veggies, whole wheat bread with chess and fruit, almond butter with fresh pears is a fave

And sometimes, well, you just have to give yourself a treat

We all have given up so much for this disease. Can't give up food too

[Roxanism]

great to hear from you too ! thanks for the input.

I don't eat any meat, so I have to use grains and tofu etc for protein, which is something I've grown used to by now. I have no self discipline so I need to be strong about indulging in restaurant food.
   Or a nice egg over easy on toast, way too much cholesterol .  I just can't seem to gain the weight. And keep getting these dark spots on my arms.
They come and go too. I am still in denial I think. Any improvement, leads me to think my cirrhosis may be reversed. haha
I am really concerned about my mind though.

[hepcandme]

Eat what you want!

Eat what sounds good.

Many of the things that people with liver disease should avoid, like hamburgers (ugh!)  and other things that once seemed like they tasted good, I am certain don't sound appealing now

Sometimes when I know I just need more greens, I make a fruit smoothie with strawberry, banana or maybe some fresh nectarine and throw a handful of kale in there too. It completely messes with the color of the smoothie - from a lovely pink to a kind of greenish brown but it tastes delicious and the kale is so good for you

I'm happy to hear from you again Rox

Think of you often