I have questions about Hepatic Encephalopathy

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.

@athenalee Yep, we both were not served well by our PCPs. Mine is such a good guy that it was hard to leave him but he let my osteoporosis slip through the cracks too and I was afraid of something else getting by him.

I will never let that happen again, I will head straight to Mass General if I ever do not get a diagnosis in a reasonable amount of time up here.

I may be interested in the webinars you mention too. I go to an osteoporosis zoom on the first Tuesday of the month now so that would be two at 7:00 pm each first week of the month.

By the way, I have been to two of the JH zooms. Have there been more since those two? I never got any notice of more. Also, do you know exactly what the numerical results of the antibody tests mean?
JK

I can add you to our Culinary Arts webinars participant list if you want, that way you’ll receive the link, and you can join when you have time. We’ll definitely post the date for the next event regularly. We’ll probably settle on a regular monthly date/time, but thought we’d poll people first.

To my knowledge there has only been two JH webinars, although they’ll probably have another soon I’d say.

There’s not a lot of specifics on “how many antibodies is enough,” most I’ve read are general and say that it’s not just antibodies, yadayada. This is an article out of Hong Kong, which actually has done well given their population and the fact that they’re an island - https://www.scmp.com/lifestyle/health-wellness/article/3143608/covid-19-antibody-test-what-does-your-result-mean-why
It says at least 50 are required for some protection. But the article cites people with numbers up to 4,000.

This one, from JAMA , cites numbers ranging from 1,000-10,000 u/mL, but again doesn’t say what’s protective. It does note that the older we are, the fewer antibodies we develop.
https://jamanetwork.com/journals/jama/fullarticle/2783797
But, ultimately I think the JH research is key for our needs and variables.

I’d say wear two masks, very well fitted, sanitize copiously, sit next to the window, with your husband next to you, and hold your breath…just kidding. But, seriously, @estrada53 seems to have a good system.

We have been told it is stage 4 liver disease and stage 3 kidney disease.

Thanks, @athenalee
Those are both good articles. I am terrible with medical jargon so I found the first to be a bit more understandable. It’s saying what MGH has said, that antibody tests do not tell the whole story. True, but in my mind it’s better to know something than to know nothing.

It says older people have a lesser response but there are many variables not considered like the health of the older person, etc. I am not in as good shape as I was before the pandemic but I do have a good lung and heart function per my Apple Watch, better than typical. That has to count for something even if not just in how sick you get if you catch Covid.

I came across some masks online today that are 5 layer kn95. I ordered some. I’m hoping they give the maximum protection available.

I was on the portal for my PCP today and they seemed to rate my prior test results in the middle of a range. I hope I get to get the test again. I don’t see why the doctor wouldn’t order it, it only takes a few minutes for someone in her office to write it up.
JK

Hi Sharon, Did you find out if your husband is eligible for transplant?

I also want to get back to one of your original questions. You asked “ As a caregiver how do I handle the anger, moods, impulsivity?” That must be very difficult. Does he remember his anger after the HE moment has passed? Did your doctor have anything to suggest?

The doctor we saw on Monday is recommending us to the transplant program. We hope to get an appointment in a few weeks.
He does remember the episodes but not the severity of them. His doctor said it was atypical of HE and he didn't have any suggestions. He will be going to a 30 alcohol treatment program (He has not drank for over 9 months and is doing well with that) and maybe therapy might help him control the episodes, but my observation is he seems to have no control over them.
My husband takes 1 dose of Lactulose daily and has 4-6 bowel movements a day. We may try 2 doses and see if there is an improvement.

I can add you to our Culinary Arts webinars participant list if you want, that way you’ll receive the link, and you can join when you have time. We’ll definitely post the date for the next event regularly. We’ll probably settle on a regular monthly date/time, but thought we’d poll people first.

To my knowledge there has only been two JH webinars, although they’ll probably have another soon I’d say.

There’s not a lot of specifics on “how many antibodies is enough,” most I’ve read are general and say that it’s not just antibodies, yadayada. This is an article out of Hong Kong, which actually has done well given their population and the fact that they’re an island - https://www.scmp.com/lifestyle/health-wellness/article/3143608/covid-19-antibody-test-what-does-your-result-mean-why
It says at least 50 are required for some protection. But the article cites people with numbers up to 4,000.

This one, from JAMA , cites numbers ranging from 1,000-10,000 u/mL, but again doesn’t say what’s protective. It does note that the older we are, the fewer antibodies we develop.
https://jamanetwork.com/journals/jama/fullarticle/2783797
But, ultimately I think the JH research is key for our needs and variables.

I’d say wear two masks, very well fitted, sanitize copiously, sit next to the window, with your husband next to you, and hold your breath…just kidding. But, seriously, @estrada53 seems to have a good system.

@athenalee Exactly what is "Transplant Recipients Culinary Arts webinar series"? When I see Culinary Arts I think cooking but what does that have to do with being post transplant?

Thanks. JK

Here’s the original post JK, it’ll tell you all about it - https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

We are planning on hosting a monthly webinar gathering for recent transplant recipients and longer term recipients (solid organ and stem cell), patients on the waitlist, and caregivers on Mayo Connect, to share healthy and delicious recipes, important food safety tips, diet and health issues, etc. that we as patients face and can discuss and share ideas.

Our first Transplant Culinary Arts event will be on Thursday, October 7 at 4 pm western / 6 pm central / 7 pm eastern.