Cirrhosis of the Liver: What to expect when waiting for a transplant?

Thank you so much. This information really makes me feel a little better. No one has ever even indicated how long someone can go on when you have this condition. This gives me a lot of hope.

@mylifebe4u I am sorry you are going through this and are given a sudden diagnosis. I was diagnosed with stage 4 cirrhosis in March, 2021- year and 1/2 ago. I’m alive now and very well. I understand how scared you are- I was too. I was diagnosed in March 2021 after driving home from work and getting confused while driving - turns out I was anemic and had an episode of hepatic encephalopathy. I was hospitalized several times and put in medications and told to eat a low sodium, low fat and high protein diet. Nutritionists stressed that protein should involve a lot of plant based protein/ beans, tofu, etc plus lean meat. Loads of water each day. I felt better when my diet was focused. I walked each day to keep some strength but I was generally miserable. Throughout the summer I became very fearful of death. In Aug - 5 no after my diagnosis- I was evaluated by the liver team at Mass General Boston, put in the transplant list Oct 1, and had my transplant Oct 29, 2021. I feel great now and I never thought I would- I was so scared like you. My MELD was up to 32, and I still lived, with very few complications so far. Keep eating healthy, plenty of rest and water, get a little exercise. Make lists of things you want to do when you’re well again, because you will experience the gift of living again.

@cs1964, Yes, you should keep fighting! By that, I mean, you should keep doing what your doctors are telling you to do. I know it is not easy, and some days all you need to do is focus on one day at a time.
At age 59, I had endstage liver failure due to Primary Sclerosing Cholangitis (PSC), and I was inactivated from the transplant list for 2 months when team thought I had bile duct cancer. My local liver transplant team was unsuccessful to get tissue samples that were necessary to rule out cancer. They arranged for me to be seen at Mayo Rochester to get a diagnosis about cancer. I missed the appointment because my kidneys failed (hepatorenal kidney failure) and I ended up in ICU and on emergency dialysis with a potential short term transfer to hospice care. Since I was at end stage liver failure, and the dialysis would only be temporary. I was not fully conscious or aware of most of this, but I do remember my husband at my bedside trying to keep me informed. After 5 days, my condition was stabilized enough for me to be flown to Mayo. I spent 2 weeks in hospital there and learned that I did not have bile duct cancer, and could be re-evaluated to be listed for a liver and a kidney transplant at Mayo. return to the active transplant list, this time at Mayo. There were times when the analog clock on the wall did not appear to move, there were days when I could only focus on getting through the next minute or hour. It was not easy, but... I never gave up praying, hoping, trying and even crying. My expert transplant teams - both liver and kidney - never gave up on me.

Here is an article from 2017:
Staying Positive While Waiting for a Transplant
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/staying-positive-while-waiting-for-a-transplant/

Hi Chris,
Just stay positive u will get thru this.. I to was diagnosed w/stage 4 cirrhosis and portal hypertension the unknown about this disease is the scariest. I had hepatic encephalopathy and my numbers were all over the place. I started my LT journey 1/20 and by 10/26/20 I had my LTP . Your liver team will monitor your numbers very closely to see when u r eligible to start to get on the T P list. They may start u on some meds to help you.
What are your numbers!
Do what your Dr. tells you to do until u get to the specialists, I did want to mention I did not get to my Liver Team until after 6months after my diagnosis.
Best thing I did exercise, diet drinking protein drinks, most of all staying positive. I hope u have a good support team. If u drink”socially”smoke stop immediately.
Please keep us posted on your progress i wish u nothing but the best thru this. This group of folks here will help u thru this I came on board after my LT.😊💚

Mayo Clinic in Arizona has a best professional Doctors, Nurses and a great Services at all,
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I am in a same situation we can be connected so we can share our symptoms and medicines as doctor' guides

Any time if you need more info we can be contact here in this group

Hi mylifeb4u,
You are in a good place to get support while u go thru this journey.
I was diagnosed w/stage four cirrhosis, portal hypertension and thru my process developed hepatic encephalopathy and ascities. My TP team still has no clue how I developed it either. I was 59 w/no underlying medical conditions and in very good health except my liver disease. Which will help u get thru this.
Keep your faith stay positive and know we r all here to support you.
I am now 2yrs. LT and doing well, it is a defiantly a process, life is beautiful I am so grateful for each day. Sounds like u have a good support group also.😊
Please let us know how your December appt.goes.
One thing they did tell me try and drink a high protein b/f u go to bed, it will help with your energy and your body needs protein right now.👍

@arqui02000, my name is Sandi and have recently become a patient advocate for liver disease with the American Liver Foundation and also have cirrhosis of the liver stage 4. I was diagnosed in May of 2020 and spent 16 days in the hospital under the care of the Northwestern transplant team. I was very unstable and discharged with high mortality rate (I found this verbiage in MyChart this year in doing some research ..sad times). Fast forward to today, I am 53 and grateful to be here today to type this message. I have alcohol related liver disease (ALD) and would like to ask if you would like to talk as my fellow advocate and I are trying to find more advocates with ALD. I am finding that helping others in this journey brings me peace as I wish I had found Jenn when I was first diagnosed.
@mylifebe4u My thoughts are with you on your journey. There are many many resources for you on the ALF and AASLD sites that would give you valuable information regarding liver health and also inspiring stores about new research on the horizon for us. Please feel free to reach out to me as well if you would like to review more. I personally think that Dec. 8th awhile to wait. What city are you in? If you are in a city with more than one choice of hepatologists, you can review all hospitals in your area that are transplant centers. Also, make sure they have you on the waitlist. You may have already done these things, but sometimes with stage 4 liver, I know my mind is not always as sharp as it used to be. I wish only the best.

Hi Sandi,
Did u get a LT?