Did you know that liver disease can steal your mind? If you have had an HE episode, do you have advice for others not yet there?

[nash2]

When the liver is damaged enough that it can no longer do its job of removing toxins from your blood the blood gets dirty. The circulating poisons can affect any part of your body but among the most dramatic side effects is when you lose your mind. Sufferers may wander and be judged to be Alzheimer's sufferers. We recently had a member of the foundation thought to suffer from dementia that was picked up by the police and put in a room till they could find out who he was. He went into a coma and almost died. We don't know how many people are thought to be suffering from dementia who are actually liver disease patients because we don't test for that. Do you think we should?

[Mel2637]

If they allowed people to be tested regularly for liver problems like colon tests liver disease could be discovered much earlier and allow lifestyle change before it got too bad. Ins companies in US do not want to pay for it if done sooner it could savage agony for patients and possible liver transplants.

[nash2 Partner in reply to Mel2637]

Our plan is to build screening centers for liver tests fattyliverfoundation.org/sc...

[mauschen]

Oh my goodness, this is so frightening. What’s more frightening is the paucity of trained doctors in the field of liver disease working as local or ER doctors. The doctors we need to rely on for an accurate diagnosis.

My mother-in-law was a heavy beer drinker. She started showing signs of dementia and I took her to the doctor but nothing was done for her. Christmas day two years ago, my husband and I found her in an acute state of confusion and took her to hospital. Before we could blink, she had been transferred to a locked psychiatric unit. No other investigation was conducted even though we informed doctors of her drinking problem.

This terrifies me! The fact that doctors can take our rights away so easily makes me less likely to seek help for my own situation. I am very forgetful with lack of concentration and get mixed up easily.

Last week I forgot my granddaughter’s birthday. I remembered the week prior to it so had posted a card and present. My daughter sent me photos of her party at 8 pm on the day. She was understandably angry that I had not called her on the phone to wish her happy birthday . So I lied and told her that I had left my phone at home, and was out all day.

I am sorry, I cannot offer advice to anyone because I am not dealing with my own situation very well.

[nash2 Partner in reply to mauschen]

Actually, you are helping more than you might think. Talking about the issues helps educate others and awareness will save lives. One of the Foundation's goals is to push medicine to be more aware and proactive about liver disease and the patient voice is critical to that so thank you.

[Lorrie420]

I just want to say that I hope my pcp doctor refers me to the Texas liver institute as my ammonia level has gone from108 to 173. He put me on 2000mg of neomycin daily. I have texted the TLI and they are really concerned with those numbers being high but the pcp wants to try and figure it out. Sometimes I believe I need prayers after going to the doctor.

[nash2 Partner in reply to Lorrie420]

Hi Lorrie420

Well, should I tell you what I think or give you love and encouragement? A bit of history perhaps. I went for 5 years from when my disease should have been diagnosed, to a cirrhosis diagnosis and I wouldn't have gotten that had I not insisted on a referral. Time is not your friend. If you believe you have a liver problem insist that you be referred, and you should be able to say where. If TLI will take a direct appointment make the call. We really have to be our own advocates and many PCP's are not qualified to deal with liver disease. I can't guess about yours but it is a national problem. Well I guess I decided to tell you what I think, but we are hopeful for you as well.

Wayne

[Lorrie420]

Thank you for getting back with me. I was diagnosed in 2013 with hep c. I was referred to a GI doctor who then referred me to TLI. They cured me there but informed me I would need test done to make sure I don't get cancer. I was told then I have cirrohsis.

[nash2 Partner in reply to Lorrie420]

My view in a case like yours is that you should be under the care of a liver specialist. If things go poorly your PCP will transfer you anyway probably, but I admit that my experience with primary care biases me. Cirrhosis isn't just a single thing, it is a process of disease that changes over time. My view for whatever it is worth.