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I brought my mom to my home state after the hospital discharged her with ESLD and put her on palliative care/hospice. Finally after 6 weeks we got in to see a gastroenterologist and they said, your livers not that bad! Why did they put you on hospice? No more morphine. My mom still hasn’t had food in over 100 days. The doctor admitted he needed to review her records. What do I make of this? He said she might have some cirrhosis. But seems healthier than he thought. I have been babying my mother for six weeks trying to do everything for her. Have I been tricked? I feel so confused by these contradictory opinions.

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So this doctor made his statement without reviewing your mother’s medical records first?

Let me tell you that a good physician should not make a statement like that until they have reviewed past medical history.

Why? For one thing, giving you false hope. Someone who hasn’t eaten in 100 days is not well. There is clearly an issue here.

I despise providers that practice like this. They throw the family into total confusion as you have admitted to being now.

What is “not bad” to that doctor if he hasn’t reviewed mom’s medical history?

Has she had a swallowing study? Do they suspect an esophageal stricture as why she can’t swallow? Is her belly swollen (ascites)? Edema in her legs? On Lactulose ( to get rid of ammonia)?

I would have her complete a swallowing study first if she hasn’t had one done before an endoscopy. Look at what happened to Joan Rivers during a routine endoscopy on a woman Joan’s age. My point is try to do the non invasive tests first before invasive procedures on an elderly person diagnosed with end stage liver disease. ESLD affects the entire gastrointestinal tract, pulmonary circulation and cardiac system as well as increasing bleeding time and glucose metabolism/use.
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Homecare123 Nov 2020
Hello,
My mother has ascites very badly (refills after draining) and edema. She was refusing lactalose and other diuretics and since she was on hospice/palliative care I was told not to push her. After the meeting with this doctor we are trying to get on a medication routine. It is all confusing. My mother isn’t very old just turned 59 but very unhealthy and frail, obviously no food. Even after the meeting with the dr yesterday she is willing to try medications and other things but still cannot eat.
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Why has your mother not eaten in 100 days?
Does this doctor have all records from out of state?
I would wait, if he does not, until he reviews all records. Hopefully you will then know more.
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Homecare123 Nov 2020
She tries to eat but vomits or declares everything gross, not cooked properly, different than she remembers, etc. so she hasn’t had more than a bite or two of food in a day since I first saw her in the hospital. I have tried ensure, soups, protein powder, literally making and buying anything she asks for.
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Your mother has not tricked you. She has improved under your care. imo.

Always get a second opinion, or a third. Even doctors will disagree on diagnosis and treatment.

Your care of her has made a difference, maybe she needed some pampering and love from you.

Also, I have seen patients improve after what is deemed life-saving drugs are removed from palliative care/hospice patients. Perhaps they were over medicated. I don't know.

This could be an improvement, a rally, maybe not a cure. Keep finding out more.

Good for you, taking the best care possible of your Mom. 🥇

BTW Offered as specific to our family member, not as medical advice. All patients are unique.:
Our loved one was given a medication meant to increase appetite, called Megestrol. From that time on, he declined and did not eat. He had all the signs and symptoms of possible side effects of that drug, declining over a period of 3 months. Once that particular drug was removed, he rallied again (still on hospice), and was spoon fed foods he enjoyed.
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Has your mother liked ice cream in the past? While I am not experiencing the length of time you have with your mother my mother was basically refusing food during a 10 day stay in the hospital. We brought in a milk shake and she gladly devoured it. I know this doesn't answer the question you posted and perhaps my answer is meaningless to the situation you are in but I just thought I would provide one possible suggestion for you.
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@worriedincali It’s hard to tell. They scheduled her for an endoscopy next week to help her eat more. I guess this is not considered palliative. She vomits or chews and then spits her food out.

I’m wondering if I should proceed with the endoscopy or wait for our appointment with the palliative care doc. She has her first visit with them in two weeks. I’m wondering if someone will talk to me before. We have only been seen by NP’s since she got to my home.
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