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

@shacquie
Turns out I had an undiagnosed autoimmune disease (Sjogrens). It caused cirrhosis—stage 4. From there my health deteriorated as I developed Hepatopulmonary syndrome. It becomes fatal quickly and the only cure is a liver transplant.

@shacquie, My first step toward an appointment with liver transplant clinic was thru my local GI (gastroenterologist). He diagnosed my disease, and he monitored/treated me until I needed higher level care. And so, I am happy to read that your mom already has an appointment scheduled with a GI to look at her current health condition.
In my experience, I did not have the episodes of high ammonia or take lactulose, so I have no comment on that. However, each of us will experience different symptoms along the way and it can become very confusing. I did receive a transplant 17 years ago.

Please know that it is 'okay' to call the GI's office to check on an earlier appointment, or to report change in mom's condition.
Sending Hugs and Hope.

@shacquie i live in a very small town so I drove to Santa Barbara 2 hours away because of a really nice hospital there that was much more advanced than the one in my area I was in ICU for many months and was transported by ambulance to USC/Keck in Los Angeles which did transplant surgeries, look for the biggest hospital I recommend USC is 5 hours from my house it was totally worth it, I’m over 3 years Post and doing very well and swimming almost everyday

@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

@deb2025 oh no! Did you have a liver transplant

@colleenyoung thank you for putting things together. I desperately would like to her to be treated at mayo instead of here where we are. We live together. I watch over her. The lactulose has made her pee alot but not poop. She goes maybe once a day. I cant tell if its because she doesn't eat much. Her belly is swollen, its gone down with lactulose but not completely.

@shacquie
Turns out I had an undiagnosed autoimmune disease (Sjogrens). It caused cirrhosis—stage 4. From there my health deteriorated as I developed Hepatopulmonary syndrome. It becomes fatal quickly and the only cure is a liver transplant.

@pgruetz the doctors here are very limited. Its such a small town, like maybe 25k people. They dont send the referrals and tales weeks before biopsies and things like that can be done. Im worried about waiting 10 more days to see the gastrointestinal Dr. Then wait again for labs and images before anything is done. What are your thoughts?

@deb2025 if its from cirrhosis that came from hep c but was treated. Is that the same? Have you ever heard of aceitis? Is it smart to drive to Arizona mayo er for help?

@deb2025 if its from cirrhosis that came from hep c but was treated. Is that the same? Have you ever heard of aceitis? Is it smart to drive to Arizona mayo er for help?