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Blue1012 Asked November 2019

My boyfriend has ESLD, how do I know if his health is declining or if it is just normal symptoms?

My boyfriend was diagnosed with cirrhosis in 2016 and since then he has been diagnosed with decompensated cirrhosis. He has had ascites, paracentesis, varicies and ulcers. He has had banding, TIPS procedure, blood transfusions, etc. He has recently had pneumonia, 2 months ago, and now he seems to be showing signs of Hepatic Encephalopathy. I don't know if he is declining in health or if it is normal symptoms of dealing with end stage liver disease (ESLD). He is always exhausted however he can only get 2 hours of sleep at a time. His legs have recently, suddenly, started not working. He has difficulty standing and walking, legs shake and he falls at times. His eyes are so jaundice that they have an orange tint to them now. He has spots in his vision at times or his vision is blurry. His hands and arms shake uncontrollably at times. He goes through bouts of depression and cries for hours, but he said he has had a diagnosis of clinical depression before. He can't do normal things he used to do, for example, washing a couple dishes takes hours because he gets so tired doing them. He has stopped taking his medication, started drinking again and says he is fine. Some days are worse than others and some days he seems perfectly fine. I don't know what to think and the anxiety I have is awful. Any ideas or thoughts?

AlvaDeer Nov 2019
You need a consult with his doctor. You are looking at end stage liver disease and the sleepiness is normal here. You need to consult together with his doctor, discuss hospice. I would stress the "getting more care" part of it rather than the "end stage" unless you feel he is ready and aware of where he is. To be frank, drinking at this point is neither here nor there. It might make things happen quicker. But there is really no upside here to grab onto. I am so very very sorry for all you both are going through.

surprise Nov 2019
I second the idea of hospice. They will make sure he is comfortable and not put through endless efforts to prolong his painful life. Hospice can include significant others in their counsel, which goes on for 6 mos after passing.

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Blue1012 Nov 2019
Thank you to everyone who has offered thoughts and opinions, (even if they sting). Sometimes just reaching out to strangers is weirdly comforting.

gladimhere Nov 2019
A dear friend passed at the age of 53 as a result of alcoholism. Many, many health issues. The end he developed osteomyelitis that became septic, then went into septic shock and passed.

Shane1124 Nov 2019
Yes those are symptoms of the progression of the disease.
Sounds like he has given up (he is drinking again). Is he an alcoholic? I am thinking alcohol may have contributed to the liver disease.
You can’t make anyone do what they don’t want to do. It’s ultimately his decision. Unfortunately he may be at the end of life.
If he chooses not to take his meds (usually given liquid Lactulose which causes diarrhea to help excrete the toxins) then eventually he will lose consciousness when the toxins build up in his blood.
I am sorry you are going through this. If possible take the time to make sure his ppwk is all in order, think about pre paying his funeral & burial and that you are taken care of.

Isthisrealyreal Nov 2019
ESLD - End Stage Liver Disease

JoAnn29 Nov 2019
Does he look pregnant? His stomach has "blown up". If so, he is in the final stages, I would say. I had a friend who had cirrhosis and this was the final stage. He needs to see his doctor. May be able to help prolong his life. You need to make sure ur taken care of.

gladimhere Nov 2019
End stage liver disease. End stage is near the end. There will be good and bad days. But, he is near the end.

You may find more knowledgeable support on a website more geared toward this specific disease.

https://liverfoundation.org/for-patients/resources/support-groups/

anonymous912123 Nov 2019
I do not know what ESLD is, but I do know how alcoholics die, had several in my family.

He is killing himself, shouldn't take much longer to accomplish his goal.

What about you. what are you doing for you? Are you protecting yourself from a financial standpoint? Does he have a DPOA and a will?

I wish you the best, take care of you.

Tothill Nov 2019
I do not know what ESLD is, but I do know what cirrosis is and he is killing himself if he is choosing to drink.

When was he last seen by his doctor?

Has he got his paperwork in order? POA, Will etc?

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