Liver Cirrhosis: Want to connect with others

No one will give you a concrete answer, we just have to suffer as well, it is horrible

My daughter is 44 years old and has been diagnosed with Cirrhosis of the liver, due to heavy drinking. Her meld score is 30 and her legs and stomach have swollen up with fluid. She goes to Banner Health, and they just sent us home with Anxiety & depression meds. We made an appointment with a Gastroenterologist but can't get in till 11/19. She sleeps 21 to 22 hours a day and I'm not sure what to do next. I asked if they could drain the fluid by a procedure called Paracentesis but they said her vital signs are too bad. I'm not sure what to do next and have tried many times to get her into Mayo Clinc. Any advice or guidance would be appreciated.

I think I would go to the ER, and explain your situation. My daughter has had to go to the ER for the same thing. If a radiologist is there, not on holiday or weekend, they might can drain her. We couldn’t have it done because of a holiday & only had a tech person there they said. So we had to get it scheduled during the next week with her liver dr. Making the appointment, was a nightmare. Was told if she had done it before, they probably could have done the procedure, have to do a scan to see where the fluid is.
The second time needing this done at a hospital/ appointment couldn’t drain her because the fluid was in her tissues in her body so had to have prescriptions to relive the fluids, took several days but it worked. Be aggressive to get it done & need patience. Hope this helps. Blessings for her. Is she a candidate for a transplant? This is what we are waiting for on. Has lots of issues with low sodium/ hospitalizations, scary.

@cheryla1957, I know that what your daughter is experiencing is difficult for her and for you, her mother. Fluid retention with abdominal swelling and leg swelling, the fatigue, Meld score do indicate that your daughter is very ill. As a patient, I had the swelling and had several paracentesis procedures as my liver failed while I awaited my transplant. I am sorry to read that your daughter's poor vital signs are the reason that she does not qualify for such a procedure at the present time. I am glad to read that she is scheduled to see a gastroenterologist (GI) in November, and
I suggest that you call his/her office and seek an earlier appointment because sometimes there are cancelations. Also, I think you will want to explain your daughter's current condition, in case the GI can see her earlier.

Cheryl, When was your daughter last seen by her provider at Banner? Have they offered any suggestions or treatments for your daughter to improve her vital signs?

Thursday 8/14/25 at 8:00AM. The PA didn't even touch her and sent her home with anxiety pills. I'm really really scared and don't know how to help her. Thank you for your response.

Thank you so much Sharon for your response. I'm calling the Gastroenterologist tomorrow AM.
The PA was not much help on Thursday, she was going to see if she could help move up the Gastroenterologist appointment. I don't have much faith in her ability to help. Meghan has only been sober for 1 month so I believe she has a long way to go to be put on the transplant list.

Praying for daughter that she receives the implant soon.

Just because she has only been sober a month doesn’t mean she shouldn’t be comfortable and treated! If she can’t call and advocate for herself it falls on you and you are doing a good job. Calling the new GI office and telling them of her condition may help you get on a waiting list if someone cancels..stress she needs to see someone sooner..tell them you are afraid for her..I’m an RN, with cirrhosis from poor eating habits, same end disease…use all the persuasion you can...or hopefully they have openings they keep open for times like this and they can get you into one of them. I wish you and your daughter well.💕

Keep searching until you find the right doctor who will treat your daughter. Like everyone, doctors have biases. Studies have shown that the majority of doctors hold on to biases - age, weight, gender are biggies - and I would guess bias against alcoholics with liver disease may be high too. But there are less biased doctors out there. Keep looking.
I wasn’t sure if I should respond but your post has helped me personally. I have found that sugar really affects my liver badly. Cutting out sugar has brought my liver enzymes to just about normal. But sugar is so addictive.
The mention of fluid in tissues really resonates. When I give into a sugar craving, I can gain 3-5 pounds over a day or two. When I am back to sugar free, I pee it out. My doc doesn’t believe in the sugar/liver connection, so no help there, which makes me feel that it is all in my mind. But this post reminds me that fluid retention does happen with liver disease and experience tells me that, for me at least, it is sugar related , so thanks for the reminder to not give in.

@cheryla1957 hi there, I am a liver transplant recipient, 3.5 years ago and I credit my own mother for saving my life so don’t hold back! My story may be different- my liver failure was due to autoimmune disease vs alcohol but there was somehow skepticism about alcohol as my illness was discovered after a minor driving accident and the police/paramedics who arrived at the scene perceived me as intoxicated. It was like a game of telephone to convince providers otherwise (despite a normal BAL).

My MELD was originally 31, I had anascarra, and I was suddenly yellow. With medicine, time, a high protein healthy diet my MELD reduced a little (28 when I was transplanted) and I stopped having these awful episodes of hepatic encephalopathy. That was the worst part.

At some point, I think July before my eventual transplant, I was having a really rough time in the hospital. My then 84 year-old Mom asked if she could “light up this joint” (she is a proper southern lady) and advocate for a faster, more focused process. She made many phone calls and just shook things up. This changed the trajectory of my care and four months later, there I was, wheeled into an operating room ready to begin again.

Every story is different, and most involve a lot of advocacy. Your daughter is 1 month sober which is wonderful. Many transplant centers will work with your daughter to support her sobriety and thus qualify her for a transplant. I believe that addiction is a disease and for some, that disease must be treated before more healing can take place. I feel for you as I remember my mom’s anguish which was sometimes more intense than mine. Keep us posted, let this lovely community support you. 🩷 Kate

Hi Kate,

Thank you so much for your inspirational message. It truly gave us hope. I’ve been on the phone all day trying to get her some relief from the water gain. It seems like the professionals are slow to respond, but we’re not giving up. I’m so happy you are a success story, and that your transplant was a victory.