I have questions about Hepatic Encephalopathy

Prayers on the way for you and your husband.

Thankfully, No! It was only for Pre-Transplant for about 6 mos. For me the taste wasn’t as bad as the thickness. After awhile it just became the norm. Using it with regular syrup on something (waffles, pastries, french toast, pancakes, sweet breads). Now, if your watching your weight I say “who cares”, this drug is a MUST HAVE!!!! So, get creative and share your ideas.

Agreed and probably an excellent idea! But I was rapidly going downhill, so trying to stay as fit as possible in hopes of getting on the list, so no pancakes. Besides I’m very small boned, so even at 5.5 I weigh in at 110. But I had gained so much ascites weight I had a new found appreciation of what it means to be pregnant with twins (I’ve not been pregnant before…)!

It was so foul, I didn’t even think of mixing it with something cause I figured it would be dreadful anyway! But, your right, maybe with fruit so it would be healthy, but less gagging? I just swallowed it as quickly as possible and downed a lot of water afterwards. And, my care giver, while she was at work, would always txt me after my med time to check to make sure I had taken it!

I totally understand, however days now have so many versions of everything (diet, gluten free, high protein, low sugar, sugar free, vegan, etc.) Just some suggestions to get some alternatives. Anything to “make the medicine go down, medicine go down”. Maybe sing the song to yourself as your taking it.

Oh man…Alzheimer’s! Seriously. I’m sure you were depressed. That’s so sad that you got that diagnosis.

I thought it was bad enough when primary finally ran blood tests (after complaining for years about PBC symptoms), and then telling me I had stage 3 liver cirrhosis and I should get treatment for alcoholism! So, quit my social drinking that day, saw a great liver specialist, got diagnosed with PBC, and didn’t go back to the primary.

And, to think we both would have been much better served by an earlier diagnosis. Had I had labs done to check for autoimmune diseases when I first had symptoms I may have survived for many years with needing a transplant. And, you at least could have had an earlier diagnosis and less psychological trauma.

True enough. Join our Transplant Recipients Culinary Arts webinar series and we can have a special segment on “tips for taking pretransplant meds and post transplant meds.” I myself had a lot of difficulty swallowing big pills after my surgery, so the nurses always brought me apple sauce. Worked like a charm!

I will certainly look into and try my best for webinars. Thank you for the suggestion.

New to all of this and just have posted a few times. Can you tell me how I find all these webinars?

You bet, here’s the link to our original posting which will provide the details - https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

Our first event will be on Thursday, October 7 at 4 pm western / 6 pm central / 7 pm eastern. It’s open to anyone on Connect, including transplant recipients, patients on the transplant waitlist, and caregivers.

I’ll add you to our list. We’ll send you the Zoom link through private message (if you haven’t used this yet, you’ll receive a notice, just like you receive your regular Connect notices). We’ll post a reminder and the recipe we’ll be cooking in advance as well.

Let me know if you have any questions.

Wow! Thanks for all of that.