Ascites with infection, muscle loss, weight loss

Hi Toughyear2023,
I am not a physician but have been in healthcare for greater than 35 yrs. I am a RN certified in critical care as well case management.
With what you say, you are in liver failure. Do you have cirrhosis? Or what is the cause of your liver failure. You do have portal vein hypertension as that is where the ascites is from. You can control the ascites by eliminating salt and monitor your daily fluid intake. But you cannot heal a liver that is damaged. If that were the case, none of us would be here.
I have cirrhosis related to NASH, Polycythemia, and Hemochromatosis and it’s been progressing since 1994.
I’m in a similar situation, with the exception that I have been found to have Bile duct cancer.
Please speak with your physician as you do not understand your diagnosis therefore don’t know how to help yourself.

I appreciate the feedback. I am in liver failure and have been thru an extensive work up at the Mayo Clinic in Minnesota. I have stage 4 Cirrosis caused by Hemochromotosis. I have multiple MRI’s (none in the past 4 months) and my liver is scarred and they say they only option is a transplant. I’ve got to complete one more counseling session and then will be on the transplant list.

With all of that being said and also being very aware of my diagnosis, my question is why do I feel so good over the past 3 1/2 months. I am taking lactulose, diuretics, two different antibiotics and milk thistle. Everything I read about liver failure, I had the first of March to include Ascites that was infected, hepatic encephalopathy, massive weight loss and muscle loss.

I guess my question is why do I keep feeling better everyday (other than side effects of meds). Why are all of my liver enzymes coming down every 30 days? Why do I have so much energy, no pain, no Ascites in almost 4 months, great appetite and am putting weight back on.

Wow I think that is so good to hear that things are getting better. What do the Drs. think? You cannot cure cirrhosis. I have heard milk thistle helps but not sure if it’s a cure to your liver disease. If you have TP at least you will be stronger to get thru the surgery.
Wishing you the best.

@toughyear2023, Hi and Welcome to Connect. I am a transplant recipient, and got my liver and kidney in 2009 at Mayo in Rochester. You are in a good place! I return annually for a check-up.
I don't know why your symptoms seem to be improving, but the thought that came to my mind is wondering if your medications are responsible for reducing the symptoms of liver failure(?)

I can certainly understand your desire to avoid surgery if that were possible. But that does not sound likely. I hope that you will continue to feel well with controlled symptoms.
When will you see your liver transplant team again? Please discuss this with them, I trust that they will be able to explain why you feel like you do. Does this sound like something that you can do?

Hey Rosemary. Thanks for reaching out to me. I’m scheduled to come back the last week of July. I’ve been in contact with them constantly. I’m gonna have more labs done next week here locally in Charleston so we’ll see. I know surgery is the only option. My son has been identified as a match so he will be coming to Rochester also in the next 8-10 weeks to go thru entire process. Just taking it one day at a time.

@toughyear2023
It has been a while since we communicated. I hope that your current health status will allow you to proceed to your appointment at Mayo in the near future.

I was at Mayo Rochester for 11 week in 2009 where I received my liver and kidney transplant. My husband and I traveled from Kentucky and we stayed in the Gift of Life transplant House. I received my liver and kidney from an anonymous deceased donor. All of my care at Mayo was beyond my expectations!
Do you have any questions as you move forward? How can I help you as you prepare for a potential transplant?

@toughyear2023, I want you to know that I'm thinking of you. I hope that you are making progress with gathering information about your potential options.
Will you send an update when you are ready?

Your story sound so very familiar. I was diagnoised with stage 4 cirrosis last August. I had over 7 liters of fluids removed and lost around 50 lbs as well. I went tpo Mayo in Jax but chose to have Vanderbilt only 3 hrs away take charge of me. I was working and bloodwork kept improving. I even had my local gastrologist say that if I was still jandice he would say that I didn't have liver disease. However, it turned quickly and my MELD score shot to 34. I had just completed my intervention class and was placed on the list. I was only on the list for 4 hrs until I was called to get to the hospital. I am very blessed. Yesterday was 4 month post LTP and I am doing great.
I tell you this not to be negative about what is happening now, but to let you know that getting a transplant can be a blessing.
I pray that you get well, however way it takes. an added bonus of transplant there is no more Lactulose required.

@hdillon7, Happy 4 month transplant anniversary! That is an amazing story, and I'm thankful that you are doing well.
I can't imagine the whirlwind of excitement and activity when you got the Call for your transplant so suddenly. Were you near Vanderbilt or did you have to travel there?

I was just about 2 1/2 hours away. Yes it was really crazy the way it happened. They told me at 3pm that I was being placed on the list. They tp;d me it would probably be a few weeks or months before I was actually going to get one. Then the phone rang at 7 pm sharp. I laughingly said its Vanderbilt load up. The joke was on me, because it was someone from Vandy that said if I could be there by 10, thar I had a Liver.
Needless to say we didn't arrive with much that I would need in the next month. However, I had a liver a few hours later.
Looking back, I don't know if I could have handled the waiting. I was just blessed that I didn't have to wait.