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

Shacquie, the symptoms can be quite scary. Usually high ammonia levels are caused by kidney or liver disfunction. They are thinking liver or they have referred you to a nephrologist. They sent you home, so your mom isn't in danger.
Lactulose acidifies the colon turning ammonia into ammonium which will be removed by the kidneys.
While your mom's trouble is undiagnosed, there are treatments, for what is probably NAFLD fatty liver disease, some just dietary.
You might try to get in to see the gastroenterologist on a cancellation. Two weeks is a long time to speculate and worry. Bless your mom's health.
I don't have a medical background.

@gently thank you for responding to me. No one seems to have any information and no advice.
I greatly appreciate you.

Hi to all. I am brand new at this. I imagine its difficult to get approved for a liver transplant and of course harder to find one. Does anyone know how or where or when to start? Is there a best way to qualify and actually get one? I greatly appreciate any comments form anyone. Anything helps

If someone really needs a liver transplant there are a lot of tests that need to be done first to determine how bad the liver function is and if there are other health factors that need to be addressed. Scheduling the tests and getting them done took 2-3 months. It felt like a full time job. I started the process in February of 2025 and had the transplant eight months later. I believe that is a lot quicker than most but I had a somewhat rare condition of Hepatopulmonary Syndrome.

First step is your doctor to lead you to a specialist, there are many factors are you taking drugs or drinking most places want zero use for a year no smoking is recommended and depending the condition of the liver is . I have heard of people getting one in 2 months it took me 7 months. My advice is be in really good shape before you have the surgery, I didn’t have that option. This is a great site to get advice and recommendations stay healthy

@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

Hi schacquie. In November 2021 I was told I had inoperable bile duct cancer and 2 months to live, or with chemo and radiation, maybe 2 years before my body couldn't take it any more. I was also told that skip calling Mayo because at age 71, I was too old to get a transplant. So a friend insisted that I call Mayo. Lo and behold, Mayo already knew about me thanks to my Physician's Assistant who had called them. I had to have all my testing done by my local cancer center sent to Mayo.
December I had 3 weeks of testing. The first Wednesday of January the Mayo transplant team board reviewed my case, and at the end of January, 2022, I was at Mayo for my 5 weeks of proton radiation and chemo pills.
My case was surprisingly fast. There was about a month of waiting before before an exploratory surgery checked to see if the cancer had spread.
Much to my surprise, by mid April on a Friday evening I got a call that my inactive status on my MELD score of 6 had been bumped up to active at a MELD score of 26 and I would be expecting a call from the donor organization soon.
I thought "soon" meant in a few months as opposed to a few years.
Less than 48 hours later I get the call that my donor's family was unplugging the equipment that no longer could bring their lived one back to them. Monday late night, I was prepped for surgery and Tuesday April 20 at 2 a.m. my cousin as my primary caregiver got a text from Mayo "old liver out - new liver in".
Though overweight, I was relatively fit with no drinking or drug habits. My blood type is common. Matches are just that. They have to pair up with your size, weight, and other details. I was very blessed and lucky that my donor ajdo129 was a match.
I hope that all those who are reading this find hope and help as I am writing this just a few weeks shy if my 4th "liversary".
Barbara

@ajdo129 I agree with all these folks. While on medical stuff we need to represent ourselves and know what's going on I think for this your local doctor / insurance co needs to coordinate with Mayo on the steps needed to try to get you on the list. To much detailed and specific requirements for a layman to do on our own. After my liver cancer diagnosis my insurance co & local doctors had me go through about 3 months of testing + one trip to AZ before I was added to the Mayo list. All coordinated by local Drs + Insurance folks + Mayo. And then was very lucky to get the transplant in less than a month. Usually takes months or even years for some folks. Best of luck.

Shacquie, how how were her ammonia levels?
If you don't have the full report from emergency, call their records office tomorrow and request them.
https://www.mayoclinic.org/tests-procedures/living-donor-liver-transplant/pyc-20384846.

@gently I live in a small town in New Mexico. Shes been to every emergency room here and they never knew what it was until recently. Its so hard to get an appointment with a specialist here end we dont hardly have any. They didnt tell us the levels or anything at all. Just if it gets worse to come back.