I have had a very rough time dealing with my liver disease. I feel sick taking my medications and I still feel sick not taking my medications. I’m on all the standard liver treatments and medications. I also have panic attacks and I am suffering again from depression. I get medical care regularly and will continue with therapy and psych medications to help me cope with this horrendous liver disease process. I have been living in the ER and cancer center for my blood, and doctors appoints. But the worst thing that has happened to me was at a recent graduation party, a family member, commented while others were asking me how I was doing, "well you did it to yourself".  “I don't feel sorry for you and many more people feel like me". To those who are suffering from Stage 4 decompensated liver disease either caused by NASH or alcoholism this seems to be the attitude of many people. Most people don't comment. But she did. I have NASH..... yes I have been overweight for most of my life. Infancy, toddler, childhood, my 20, 30, 40, etc. So yes, I did it myself. But, I researched and only 25% of the worlds overweight people get NASH. So there has to be other mechanisms here going on. I have been a diabetic since childhood, but the testing standards were different then. I am heartbroken.

We recommend you watch this excellent documentary from the American liver Foundation by Cynthia Wade

http://www.hesback.com/#watch-video-desktop

This is a quote from their description.  If you want to understand this side effect of liver cirrhosis this is a good reference.

 Each year, hundreds of thousands of cirrhotic patients are affected by hepatic encephalopathy. In addition to the toll the condition takes on these patients, it impacts their family and friends, who are burdened with a disease that affects many aspects of their lives. Despite the seriousness of the condition, many patients are not receiving the treatment and support they need. This film was created to tell the stories of a patient population that is often without the advocates and support it so desperately needs. Director Cynthia Wade focuses on telling stories that might otherwise not be heard.

WRESTLING THE  MONSTER: LIVING WITH HEPATIC ENCEPHALOPATHY  follows 4 patients suffering from hepatic encephalopathy. A matriarch and military veteran in northern California now finds herself housebound. In New Jersey, a beloved wife and mother saved by a transplant still struggles with lasting effects. A father in rural Oklahoma flounders with a condition he can’t comprehend. And a formerly high-functioning mother in Florida finds herself isolated and a shell of who she once was.

The “Experts by Experience” series are special reports by Inspire developed in cooperation with Stanford University Medical School. Each compilation is comprised of a year’s worth of monthly columns written for Stanford Medicine’s “Scope” medical blog.

In “Experts by Experience 2017,” patients and caregivers affected by such diseases as stomach cancer, bladder cancer, scleroderma, Ehlers-Danlos Syndrome, lipedema, sarcoidosis, share their experiences and insights.

A personal note, I added this here in part because my story was one they picked but the messages from the patient perspective are often the best help for people struggling with disease.

Click anywhere here to download the article.

I find myself recalling the New Testament imagery of death as the rider of the pale horse.  Those thoughts have come recently when I reflect on being a caregiver for a terminal patient. I’ve seen others, my mother in particular, do it for loved ones without really understanding the price they paid.  I never internalized what it actually means to stand as the last guardian of a valued life as the pale horse of death comes ever closer.

With modern medicine dying may be less painful than in ages past but it is much longer. The results of our technology have outpaced our ability to bear the burden of end stage disease in a humane way.  The result is that we have a crisis of care for terminally ill patients.

Before major hospitals and modern medicine the deathbed watch was mostly a family affair.  People lived and died within family units and families were mostly larger so death was no less personal but it was attended to by a group.

Today, with our far flung and smaller families coupled with the treatment protocols of modern medicine, dying is now far more solitary and often surrounded by the tools of medicine and strangers. For those lucky enough to have family able to care for them at the end, the burden on those caregivers is largely unrecognized and unsupported by the community.

On the morning of December 23, 2010, after having my gall bladder removed, I was shown a picture of my liver and told I had a stage 4 liver cirrhosis. It was a powerful and frightening moment – one that is seared into my memory. And one that began more than a half-decade of tests, misdiagnoses, and, eventually, lifestyle changes.

I was astonished that morning to learn that my case was pretty typical. Cirrhosis, the final stage of liver disease leading to liver failure, is commonly reached without any warning symptoms. I remember very clearly my doctor’s words: “I’m sorry, but we have nothing to offer. There is no treatment.” My vision of my liver was that of a deadly beast that would kill me. Being told that losing weight and exercising could help didn’t inspire.