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

@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?

@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.

@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.

@deb2025 oh no! Did you have a liver transplant

@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

@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, 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
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 husband had cirrhosis of the liver. Aceites is fluid in the stomach. The liver is not dispersing water and other fluids into the kidneys or other organs. When that happens she needs to get a paracentisis. It removes the fluid. Fluid is bad because it can get to the lungs or heart. Is your mom’s stomach big? If it is, thats aceites. Ask the Dr if she can travel. The emergency at the hospital should be able to tell you. My husband rode with me to San Antonio. It’s 2 1/2 hours from where we live. He was really sick. I wish ya’ll the best. I’m not trying to scare you and everyone is different. My husband was diagnosed with it 3 years ago. He had gotten Hep C, fatty liver and alcohol liver.

@shacquie we were in Nebraska, my husband was working there. We were living in our 32 ft trailer. When my husband started getting high ammonia levels, it was at 2 a.m. he got out of bed and was just standing in the living area. I got up and asked him what he was doing. He said he was fine. I went back to bed next thing I know he is on top
of counter. I called the ambulance the guys had a hard time getting him in the ambulance. He was taken to hospital and had very high ammonia levels (hepatic encephalopathy). He had to start taking lactulose and rifaximin. He was also getting paracentisis (fluid from stomach out) every Wednesday. It was easy getting liver dr appointments once we got the first appointment in San Antonio Texas. Corpus Christi does not have too many liver specialists. Best liver Drs and liver transplant hospital are in San Antonio Tx. The Drs said there is really no way of knowing when ammonia is up, but if you have her hold her hands up in front of herself, if they start shaking and going forward that’s a telling sign her ammonia is up. My husband got a liver transplant. He is having problems right now with his memories. They said they have to tweak medications.