Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

Colleen Young, Connect Director | @colleenyoung | Jan 30, 2022

In reply to @marinab "@rosemarya Is there any group for Cirrhosis and/or Ascites? I would love to connect there. Thank..." + (show)

Hi Marina, here is a discussion in the Digestive Health group you may wish to check out:
- Cirrhosis of the liver https://connect.mayoclinic.org/discussion/cirrhosis-of-the-liver-1/

You may wish to start a new discussion specific to ascites and liver transplant.

cybele65 | @cybele65 | Jan 30, 2022

I have end stage liver disease. The biggest battle has been with ascites (large volume) with weekly paracentesis. I had a T.I.P.S. done on me a couple weeks ago because of that. Unfortunately I have not seen any significant decrease in the ascites accumulation. (5 liters taken off one week later) I have gained 5 pounds in 3 days since then. Has anybody else had a similar experience with tips?
By the way, I drastically changed my diet about 6 months ago. I do not eat anything from a can or a box. I eat plenty of fruit, vegetables and drink plenty of water. I use salt alternatives to season my meals and I try to get as much protein as I can. (lost 50 pounds of muscle mass) I am really disappointed to say the least. Should I have seen immediate results or does it take time to work. I welcome any feedback on this matter.
Claude

marinab | @marinab | Jan 30, 2022

In reply to @athenalee "Hello @marinab, I was diagnosed with stage 3 liver disease in June 2019. I saw my..." + (show)

@athenalee Thank you for sharing this information. We understand it will not cure his liver cirrhosis but as wih your varices we are hoping it will help with his ascites so he doesn;t have so much abdominal fluid building up and have to go into hospital every month for paracentesis. It's good to hear that TIPs stoped the varices. So you did not experiene any HE after the procedure?

athenalee | @athenalee | Jan 29, 2022

In reply to @marinab "Thank you so much ! I will check out the TIPs discussion group. We live in..." + (show)

Hello @marinab,

I was diagnosed with stage 3 liver disease in June 2019. I saw my liver doctor in September and she immediately sent me to get an endoscopy. The doctor found five varices and tied them off. About a week later they burst. The same doctor couldn’t control the bleeding, so I was helicoptered up to the regional hospital. I was a week in the ICU and sent home. The next day, the varices burst again, and once again helicoptered up to the hospital.

The bleeding couldn’t be stopped, so I was given the TIPS procedure. I spent a couple more weeks in ICU and was sent home. I had no ill effects from the procedure and no more varices.

I returned to work full time. Of course, it didn’t slow the progression of my liver disease, but not having to worry about varices again was indeed a blessing.

My best wishes for you and your husband. Thank you for being his caregiver!

marinab | @marinab | Jan 29, 2022

In reply to @rosemarya "@marinab, Welcome to Mayo Connect. I am sorry to learn of your husbands ascites, and glad..." + (show)

@rosemarya Is there any group for Cirrhosis and/or Ascites? I would love to connect there. Thank you!

digibson | @digibson | Jan 28, 2022

In reply to @lcd "I a have hereditary issue with my liver. Slower process than most. I wanted to let..." + (show)

Thanks. I had iscities but has been well controlled with meds. I have had varicies but none large enough to band and have never bled. I’ve only known about my liver problems for a couple of years and found great hope if you had had it for 14 years. Hope mine hangs in there 14 years. Might, MELD score is only 6 or 7. Sorry I know I blew the spelling on this.

marinab | @marinab | Jan 28, 2022

In reply to @lcd "I a have hereditary issue with my liver. Slower process than most. I wanted to let..." + (show)

Thank you for the positive feedback!

marinab | @marinab | Jan 28, 2022

In reply to @rosemarya "@marinab, Welcome to Mayo Connect. I am sorry to learn of your husbands ascites, and glad..." + (show)

Thank you so much ! I will check out the TIPs discussion group. We live in Hong Kong - while they have excellent liver facilities, the culture here does not see living donors. And we don;t have any family who would qualify or be willing, so we are waiting patiently in line which could be a long way away as he is not on the priority just yet (in a way thankfully!). TIPs was recently recommended tohim and we are weighing up the pros and cons. Like you, his ascites is very challenging and he currently goes in every 5-6 weeks for paracenteses. He also has inguinal hernia as a result which is very uncomfortable but they say they cannot repair this until his ascites is resolved as it will only come back.