Liver transplant - Let's support each other

Thank you for the positive feedback!

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.

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

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!

@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?

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

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.

My understanding is that a majority, up to 80% or so,, but not all patients with liver cirrhosis who have the TIPS procedure will see a reduction in ascites. You may find some relief over time. Everybody has different experiences. I had the procedure when I was in stage 3 liver cirrhosis. My condition remained stable for about 6 months, but as I entered into end stage, I developed substantial issues with ascites, fatigue, and brain fog.

Your dietary changes are definitely a great undertaking for helping your body during this time. Walking is good to help keep up your strength. Please try to remain positive. I know it’s a challenge. Be sure to contact your liver doctor and express your concerns to them.

No, I had no issues following the procedure. As I was in stage 3 when I had the procedure, I did go into end stage about 7 months later. But, it was definitely a blessing for me to have the procedure so that I didn’t have anymore issues with varices. And, I didn’t start developing ascites for about 6 months after the procedure. My liver cirrhosis was caused by an autoimmune disease that had been misdiagnosed and well advanced by the time it had caused stage 3 liver cirrhosis, along with damage to my bile ducts, spleen, and gallbladder.

Thank you for your feedback @athenalee . So you currently have ascites? Do you have to have the fluid drained and if so how often? We are hoping that tips will lessen the fluid build up - my husband has had ascites for 4 years now and currently taps every month at the hospital.