← Return to How, when, where do you start the liver transplant process?

Discussion
Comment receiving replies
Profile picture for katebw @katebw

@shacquie early on in my liver disease I would have high ammonia levels which led to general confusion/disorientation (this was how my liver disease was diagnosed- I had a related episode of confusion while driving). It eventually led to major episodes of hepatic encephalopathy which were scary- I would become confused, angry, not myself and I barely remember those episodes. I took lactulose and an antibiotic beginning with X-I cannot recall the name- to stave off these symptoms. Lactulose is unpleasant to drink and it leads to diarrhea but is necessary to remove the bacteria in one’s body that can lead to high levels of ammonia.

My liver disease was so bad I had to have a transplant, but prior to that with above medications, my symptoms eased a lot.

I agree that trying to see the GI doc earlier is reasonable. I used to have my ammonia levels checked weekly, and I was educated around clinical signs to look out for- difficulty concentrating, increased shakiness in extremities- so I could take extra doses of my meds if needed. My doctors recommended that I not be alone at night/early morning when symptoms tend to worsen.

This is a great forum which is moderated by kind humans. Keep asking questions.
Kate

Jump to this post


Replies to "@shacquie early on in my liver disease I would have high ammonia levels which led to..."

@katebw thank you soo much for responding to me. Everything someone reaches out it takes me one step further. Im very alone in this, without help. Is it unreasonable to feel like waiting for the specialists is catastrophic? Is it possible for the liver to just shut down randomly one day while we are waiting and taking the lactulose and water pills? Ill ask for antibiotics.