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Liver transplant - Let's support each other

Transplants | Last Active: 15 hours ago | Replies (1602)

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@marinab

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.

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Replies to "Thank you so much ! I will check out the TIPs discussion group. We live in..."

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, I want to let you know that I am thinking about you across the miles. Has your husband been able to get any relief from his ascites with repeat paracenteses? Have you heard anything about when the TIPS procedure might be scheduled?
How about you? As a caregiver, your health is equally important as your husband's. What is it like for you? And how can we on Connect support you?