Lactulose question

@parrot53 I was just remembering that I was told that a high protein diet that has a lot of PLANT based protein (tofu, legumes) is thought to be helpful in general but the protein part for HE. I supplemented my diet with protein snacks like keifer, Greek
Yogurt, almonds, pb on apples etc. When I was very intentional
about my diet (guided by a liver team nutritionist which was SO helpful) started to have many more good days and no more HE. I had also been having awful vivid nightmares which were thought to relate to
ammonia in my brain, and those also abated. I’m a social worker working with major mental illness and it certainly has made me more empathic with my patients when they lose their minds.

@katebw
That is good to know. I have been fairly good at my diet but I know there is still room for improvement. I am so glad to know it really helped you with HE when you stuck to it diligently. Glad you mentioned the nightmares. I get like movie reels before I go to sleep. I was wondering if it had to do with ammonia build up.
I was a public school teacher. You are to be commended for helping people. Please know you are appreciated by many of us. Thanks for responding. It was a great help.

I don't think you have a choice. I've had many HE episodes, it's dangerous not to take it. I still have bathroom issues, but not as bad as they were. I personally hate the taste and the issues, but I take it anyway. It was an issue as I tried to work part time, but now I can no longer work, I also believe depression could become a serious issue without it. All the best, this is all scary stuff I know.

I take both and occasionally Miralax. Our out of pocket was $350 but Mayo wrote a letter and it's 100% covered. And HE is better but I still have hand tremors

Was told by Gastroenterologists that my HE is also caused because I get too sick to eat (blamed it on the cirrhosis).

Told to eat protein every morning and night.

Found these great (delicious) Power Crunch bars, a Boost pure protein cup and small liquid packets of Nitrica AWC.

I had a frightening reaction to a Paracentesis.

When I was in hospital, the doctor told me too much protein turns into ammonia.

Limited to 40 gr protein per day.

@jeniferwm i was told to eat a lot of protein- like 80
Grams a day pre transplant, but no more than half animal protein- too much animal (vs plant) protein can make you prone to HE. I was also encouraged to eat Whole Foods (not processed stuff). In any case, they key for me was talking to my liver team nutritionist.

What happened with your parentheses?

Any tips or dos and don’ts about lactalose?

This is from a care takers perspective and expertise over 10 years

My wife had NASH she was deemed disabled due to the liver failure and the brain tumor that caused the Nash so she stayed home. However, she had bathroom issues with lactulose at higher dosages . My experience as a caregiver was that it really depended on the dosage and that is a tricky critter to manage. The hepatologist had her on 40 g three times a day and it seemed like we were always having run ins with high ammonia levels creeping up . It was only when I discovered that the hospital was using 60 g three times a day and told hepatologist that we figured out she need a slightly larger dose . That increase the frequency of incidents with accidents .Plus My wife had a really hard time keeping it down because of the taste . I was never able to find a way to mask it some people have had luck with juices, chocolate, milk, etc. We switched to the powdered form 0 taste she could take it in bottled water but it was $500 for 30 days vs $100 for 30 days .. Then we had a battle with the new insurance over the extra cost when I changed jobs, the old one was cool with it the new one well not so much and I could not do the $500 a month out of pocket for long .The hepatologist switched my wife to MiraLAX $20 a month OTC .it is not the same mechanism. It does not bind to the ammonia like lactulose does ( or so I read ) . as I remember, it is an osmotic so works differently . However apparently it has a track record of it being effective on some patients but not all. My wife was one of them thank the lord . It is not nearly as brutal on the bathroom end of things as lactulose is . The accidents pretty much went away. I will throw in some caveats .If she picked up a UTI due to the use of Xaifan or a bug . She would slowly start showing symptoms of encephalopathy . I was lucky any bouts with encephalopathy with my wife manifested early on the rather benign tells of hand tremors and then slowed speech cadence it did take me a few rounds with it to figure out her tells, my understanding is everybody’s different . I always kept some of the lactulose on hand and had her take a few doses to help get the ammonia levels down first sign of any tells instead of the MiraLAX Our hepatologist said that was fine (, I never did anything without clearing out with the hepatologist, ) . I’m not a doctor( I fix machines) , but my personal experience with my wife was MiraLAX was great for maintenance, but lactulose was better for getting levels back down if they were up and of course we always got medical attention to ascertain why her ammonia levels had gone up . Every time in her case it was due to some sort of secondary infection.Talk to your hepatologist maybe MiraLAX is a viable option for him . Hope this helps you.

Had paracentesis 18 times since February. Other than a few post surgical pains (one after bowel got stuck in suction) things went well - until they didn’t. Had infection, internal bleeding, sepsis and organ failure. Stopped breathing so I was intubated. I am terrified every time I get another.

Hi, I was able to take the lactulose and work. I was hospitalized one time for HE I pray it never comes back. It was very scary.
I am 2.5 LTP had one rejection in 2022. All in all I am doing well. I am on a lot of immunosuppressants due to that episode. The docs said baby steps b/f they decrease them.
I wish you and your husband best of luck it’s definitely a journey but worth it.💚💚😊