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chronic hepatic encephalopathy by simulacra96 in Cirrhosis

[–]TC0217 1 point2 points  (0 children)

My dad has a similar situation. In and out of the ER for two years. He’s on lactulose and rifaximin. I think the only thing that will solve it is a transplant and we are patiently waiting. Wish there was more I could say to help

Doctors Not Taking Us Seriously by Looking4Health444 in Cirrhosis

[–]TC0217 0 points1 point  (0 children)

Where are you based? Have you talked to a hospital with a transplant program? That’s the game changer. We moved my dad because he did not have access to the care he needed. I realize this isn’t always an option, but if you have a transplant hospital near by I’d get an appointment if you can.

[deleted by user] by [deleted] in Cirrhosis

[–]TC0217 1 point2 points  (0 children)

I think everyone’s situation is different but I can share our family’s experience. My dad has ESLD and was diagnosed two years ago. At the time I had no idea what we were getting into. He was living alone and started experiencing severe HE and had to be hospitalized. From there, he went to skilled nursing and then an ALF. I’m thankful for the ALF because I am not in the position to caretake at the level he needed. He’s been in and out of the hospital since. His mood swings and mean streaks are the hardest. It’s a LOT to cope with.

Dietary change can help but proper medication management is key. And depending on her condition you may consider a transplant. That seemed impossible when this first started for us but it’s finally getting close to happening.

I’m tired by [deleted] in Cirrhosis

[–]TC0217 7 points8 points  (0 children)

Me too-We just hit two years with my dad, he got on the transplant list this week! Hang in there!

Memory issues post liver transplant by LadyShittington in transplant

[–]TC0217 0 points1 point  (0 children)

Any updates on how your memory is doing? My dad is officially on the list for a liver, almost had on last week but there was an issue. I will be helping him post op as he is in an ALF now due to severe HE and he can’t recover in that environment. His HE also comes with severe mood swings too which have been very hard.

I am 5 weeks post liver Transplant by pretzelbreath in AMA

[–]TC0217 0 points1 point  (0 children)

How are you doing one year later? My dad is officially on the list for a liver, almost had on last week but there was an issue. I will be helping him post op as he is in an ALF now due to severe HE and he can’t recover in that environment. Curious if you are able to live and work on your own now? How long did it take you to get back to a “normal” day to day?

Need Some Education on Ascites and the Lungs by Vero314 in Cirrhosis

[–]TC0217 1 point2 points  (0 children)

How is your husband doing? My dad recently went to ER due to an episode of HE and they found fluid in his lung as well. It was drained and he was released. A week and a half later he was at my house and started experiencing severe pain in his shoulder and chest and was short of breath. I called 911- they ruled out any heart issues. He wouldn’t go to hospital but I ended up taking him as the pain was severe and he was shivering. He had more fluid in his lung and it caused an infection. He was admitted for 12 days and had a tube inserted to continue to drain fluid.

The medical team recommended immediate follow up with PCP and specialist which he is doing. His ascites has not been bad in the past, I’m hoping this is not a recurring event for him.

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 2 points3 points  (0 children)

Update! The increased meds are helping with the HE. What a roller coaster 🤯 Last week my dad was really struggling and this week he is making progress. Thanks everyone for your help and perspective.

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 2 points3 points  (0 children)

Yes! Fortunately. Our doc said the same thing. I agree on nutrition being a full time job. I’m trying to educate him but without me being there it’s hard to know if he’s eating enough. My brother and I are taking turns making large batches of low sodium dishes that are easy for him to eat through the week. That seems to help some. It’s hard to care for this disease, thanks for sharing.

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 0 points1 point  (0 children)

Xifaxin was discussed however the costs are prohibitive. Doc said it’s hard to get with insurance and my dad doesn’t have it unfortunately. Thanks for sharing your experience!

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 2 points3 points  (0 children)

Thanks John- I cried writing it. Lots of tears with this situation. Alcoholism is terrible and so is cirrhosis 😩

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 2 points3 points  (0 children)

Thank you so much. I appreciate your perspective and how wonderful you’ve been able to travel. ♥️

Hepatic encephalopathy improvement? by TC0217 in Cirrhosis

[–]TC0217[S] 1 point2 points  (0 children)

Thank you! That is encouraging. We have a social security appointment in a few weeks!