Annette Stocker, had many HE episodes... - Living with Fatty...

Living with Fatty Liver and NASH

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Annette Stocker, had many HE episodes before her transplant and has offered these comments. Be aware that many hospitals don't do HE well

nash2
nash2Administrator

I Had Severe HE it never Started Slowly

I Was Hit No Warning Straight Into Being A Mad Woman

I Had No Knowledge Of Anything I Was Always Found By My Daughter

Hospital Knew I Had Cirrohiss

Been hospitalized Many Time

Still Treated As someone With mental health issues

When I came back to myself

They wouldn't listen

Had Brain Scans all fine

But for 2 Yrs Treated awfully Everytime, HE Occurred

Which Was Every 2 Week's for a year

Thank God Transplant Came Last June

No More Suffering

A Lot Of Local Hospitals don't

Have The knowledge of HE

Hardly Any Nurse Knew what It Was

So HE patient's Really go through It

Unless they are At a Transplant Hospital where They know

I Feel For All Who goes through this!!

10 Replies
oldestnewest

Glad you got a transplant. I have had 3 HE episodes this year and one hospital just thought I was crazy. It hits without warning and a terrible event. Trying to get on Duke’s transplant list for a replacement liver. I take Xifaxan and lactulose for some relief today but it’s not 100% effective. Hoping for a transplant.

nash2
nash2Administrator in reply to Lemmystic

I wish we knew how many patients are seen by hospitals that think they are dementia patients when it is really a liver disease. I'm sure people have died because of that.

nash2
nash2Administrator in reply to Lemmystic

If you need help with transplant centers you might talk to Mariel Carr of Compare Transplant Centers, she is the expert

fattyliverfoundation.org/tr...

How is HE diagnosed?

How is HE differentiated from mental health issues?

nash2
nash2Administrator in reply to Granny56

Hi Granny

He is difficult to diagnose which is part of the problem. There is no "test" for it and many physicians struggle with it. It is viewed within a variety of health issues. When you know a person has cirrhosis, for example, and starts acting strangely it would be an indication of HE. Like the earlier post, an ER likely doesn't have the history or training to manage the problem so it can easily become life-threatening and is a hazard for cirrhosis patients. Most mental illness develops over time but I believe a lot of people with undiagnosed liver disease have mild HE that is basically ignored as one of those things that happens to old minds. Carrying something that warns health care workers or police that a person could have HE is a good idea.

Granny56
Granny56 in reply to nash2

Thank you. I think that I have been suffering from HE intermittently as I seem to have symptoms of dementia yet brain scans are ok. It can be very frightening..

nash2
nash2Administrator in reply to Granny56

HE is a very scary problem, particularly for people who might live alone. It can cook along, just below the surface and steal bits of your life, but then something can push it into high gear and quite literally give you dementia. The only good thing is if your care team recognizes it and can deal with whatever has disrupted your chemistry you can come back. Annette's story was one of repeated bouts in the ER. Today, thanks to a transplant she is herself once again.

mauschen
mauschen in reply to nash2

How likely are people with multiple organ disease including diabetes (T2DM) to get a liver transplant?

nash2
nash2Administrator in reply to mauschen

I need to refer you to Mariel Carr, she is the expert on the transplant system

fattyliverfoundation.org/tr...

mauschen
mauschen in reply to nash2

Thank you

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