@sherry01, Welcome to the conversation. I am a transplant recipient and I remember how confused I was during my pretransplant time when I was very ill, and found everything to be overwhelming and worrisome. I see that you are on the transplant list, is that correct?
You are absolutely correct to be taking your issues to the transplant team! When you talk to them, I encourage you to take someone with you because an extra set of ears and an extra voice will be most helpful so that you have someone to support you when you leave the doctor's office. Also I recommend that you make a list of your concerns...you could use the note that you wrote here an your reference. These are the things that the doctor needs to hear (from you) because our labs don't tell how we fwwl or what we are experiencing after we return home - our voices are the only way that they will know what's going on because we all react to medications differently. They will want to find ways to keep you as healthy as possible so that you can advance to the transplant.
Other members have discussed their experiences with lactulose. I want to share this support group with you. It is long, veers on and off topic, and includes some helpful ideas.
- Lactulose question
https://connect.mayoclinic.org/discussion/lactalose-question/
I did not have cancer, and I did not take lactulose, so no experience to share. But I did have liver failure and kidney failure that resulted in a double tranlant in 2009. And I know that we must continue to take medicines, even if we are feeling like we don't need them.

I hope that you will talk to the doctors real soon, especially with the way the lactulose is affecting you. I wonder of there is an alternative medication. Do you have an upcoming appointment? I look forward to hearing what you fine out.

Hello. I’m new here also was about 3 weeks ago I was told I have the HCC cancer. I’m going to the city of hope in Duarte ca. and upland ca. first surgeon told me no operation cause he didn’t think I would make it through the surgery cause I also have Copd chronic bronchitis also autoimmune hepatitis. So I just seen another doctor he suggested to do the ablation. Where they heat it up and kill it. It would probably be about month recovery I’ll be going for cat scans 4 x a year The dr said this HCC liver cancer is slow growing and common. He told me he couldn’t tell me how long I’ve had it. Now I have read up on this lol and I’m reading it’s an aggressive fast growing cancer and probable 5 years left to live. My dr says don’t believe everything u read. My dr made me feel 100 x so much better but I can’t get out of my mind what I’ve read. Can anyone give me some advise and what their going through with the HCC??? This is all new and I don’t even know what stage I’m in. Thank you for your time

My 72 yo bf has HCC. This can cause ensepilapathy. Not sure on that spelling. He has problems remembering simple words and names. Very tired. He's stage 4. HCC is also causing Hepatopulmonary syndrome and he has a spot on his left lower lung. He just had a biopsy last Thursday. Waiting on results. His main problem is the itching. He can handle the other stuff but this is driving him insane. Just started Ursodoil yesterday. He has been prescribed everything under the sun for it. Lactose is his best friend. I'm researching methylene blue. It has good results for brain health and has also helped those with cirrhosis and HCC