Hepatic Encephalopathy HE Patient and Caregiver Survey

You’re going to love telling YOU truth in this hepatic encephalopathy (HE) patient and caregiver survey that I’ve created just for you. Let’s start with this: You know that I’ve written so much about the hot mess of brain fog, and HE. It gobbled up my whole life and brain for years. It is the MOST CRUEL aspect of liver disease to me. Everything else, including hepatitis, liver cancer, all the things we deal with – we just keep going. But when we’re going going going Koo Koo, it’s painful for our families and also for us as patients. I’ve got so much to say about that, so I’ve gone a step further and finished my HE Book about our shared journey.

Ready to share your story and help others? Click now to fill out the anonymous survey. Patient Caregiver Survey Link Here

A New Book: Brain Fog to Brighter Days

Brain Fog to Brighter Days: Your Companion Guide to Living with Hepatic Encephalopathy began as my personal deep dive into my own HE living hell. I outlined this book over 10 years ago, and then got too brain foggy to finish. But I never quit working on it. A paragraph here and there, sometimes entire chapters, many MANY pages in my personal journey, and even those crazy videos I made keep calling me back to try and understand HE better. 

In the process of my writing, something emerged. First off, I had more questions than answers. In the process of looking for answers I talked to a LOT of people. Much of my writing was taken from conversations with patients and with doctors through the American Association for the Study of Liver Disease (AASLD).

I read deep into the night while I had reverse sleep pattern. So many studies have been conducted about ammonia levels. The newest research grabbed my attention. A generation of young brainiac doctors were getting intensely interested in how to improve the quality of life for HE patients.

Our medical providers DO care. Their own information may be outdated, or their experience with patients may override what they learned in medical school. They want us AND our caregivers, family, and loved ones to have a clearer diagnosis, better medication, and support.

Caregivers: Our Unsung Heroes

You are our heroes who stand by us and hold our hands and our heart when we lose ourselves. Even though your suffering is silent, we have moments of clarity and see you.

This survey is designed to gather insights from BOTH people living with Hepatic Encephalopathy (HE) AND their caregivers/loved ones. Your experiences are invaluable in helping us understand the challenges and triumphs of navigating HE. All responses will contribute to a book and podcast aimed at providing guidance, validation, and hope to others in the liver disease community.

Your responses are completely anonymous. Please do not include any personally identifiable information (names, specific dates, unique locations, etc.). By completing this survey, you understand your anonymous responses may be used in future publications or content to help others.

Thank you for your courage and willingness to share your story. Our friend Lorrinda Gray Davis and I are working on getting teched out and ready to podcast. The book is in my first round of a combo of edit and revision.

I realized that YOUR stories were what was missing. I have my own, but you are the ones who can share the sad, zany, mixed up, sometimes funny, but always messed up world of HE from a patient or caregiver viewpoint. Your unique experiences – from the smallest daily confusion to the biggest moments of crisis – will illuminate the path for countless others who feel lost in the fog.

Let it All Hang Out – Tell Your Story

All you have to do is fill out the survey by clicking on the link here or above. All of your private answers will go anonymously to my private data sheet. From there, I will compile the data and quotes or stories. By giving just a few minutes of your valuable time, you will be helping others with life saving, and life-giving information. Other patients will not feel so alone.

I wake up most mornings to email with a story of HE from a patient or caregiver. I want to lovingly give them the gift of information and caring support to get them through the days ahead.

Get ready for the launch of Brain Fog to Brighter Days: Your Companion Guide to Living with Hepatic Encephalopathy and the soon to come Podcast – After the Diagnosis – Unfiltered and Inspired led by Lorrinda Gray Davis and Karen Hoyt. We’re still brain foggy, but we’re still going strong and connected with patients so that we can Live Longer and Stronger.

Thanks in advance besties. xoxo Karen