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

@craigcraig we dont have much options here where I live in new mexico and I dont have anyone to help me with this. Its limited as far as doctors, care, Specialists. It could take weeks before even seeing one. Meanwhile her belly is bloated. The lactulose makes her pee alot but she's not really eating so she doesn't poop. I feel lost and confused and like time is of the essence but I dont know where to go now. Im only 6 hour drive from the mayo emergency room in Phoenix. 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?

@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@shacquie Hi I would try to confirm something before hand before driving NM to AZ. Even if it is a small town doctors have a code they need to treat folks. Not sure if referrals per se are covered with that. I think Mayo would treat her but I think it's better to maybe call your Insurance folks or whatever Docs have already treated your Mom or Mayo. To firm something up. Glad you have an appointment with a Doc you mentioned in your other thread. If any Mayo Coordinators, Directors or Mentors see this thread they may have other/better suggestions. Hang in there.

@craigcraig thank you for responding to me, its very helpful. I feel like im starting at bottom step. Ill call first thing in the morning. If yoy think of any other advice I truly welcome it.

@shacquie, if your mom's doctor recommends a liver transplant, you may be referred to a transplant center. You're also free to select a transplant program on your own or choose a program from your insurance company's list of preferred transplant centers.

You can read more about the liver transplant process here: https://www.mayoclinic.org/tests-procedures/liver-transplant/about/pac-20384842

I moved both your discussions into one so that people can see more of you and your mom's story. I see that you are very worried about your mom. It must be hard to see her suffer and even harder to wait for an appointment to see the GI specialist. Thank goodness she was given lactulose by the ER doctor. It will lower the level of ammonia by increasing bowel movements. It also may improve the health of her gut, making recovery easier.

As @katebw suggests you might wish to stay close to your mom the next days until her appointment with the GI. As Kate and @gently said, don't hesitate to call the GI office to see if you can get an earlier appointment.

If you would like to seek the opinion of Mayo Clinic experts, I recommend calling them or using the online form to request an appointment. You can find the Arizona number or online form here: https://mayocl.in/1mtmR63

Does your mom live with you or near you?

@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 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.

@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
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.