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ESLD - What to expect at home for last days

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Margwen
New Member
Joined : Aug 2020
Posts : 1
Posted 8/3/2020 1:05 PM (GMT -8)
Hello and thank-you for all of the great posts and helpful comments on this forum. I am new here and have a few questions.

My brother has been diagnosed with ESLD and has spent the last month in and out of hospital with severe EH, jaundice and ascites, as well as AKI. He had his first bout with jaundice and ascites in the ICU about 2.5 years ago, but after that he seemed to stay off the alcohol for about a year, then he started drinking in earnest again.

He was admitted to the hospital again with a serious strep infection, jaundice, EH in early July (about a month ago) and his kidney function had rapidly declined. However, with IV antibiotics, albumin and paracentesis, he turned things around, which the docs said was surprising - they improved enough for him to be discharged a week later as he was considered "medically stable" - he was going to discharge himself anyway so they let him go. His visit with the hepatologist the following week was not encouraging - she gave him 2-4 weeks to live. They talked about him staying at home with palliative care until he could not be managed, then a hospice room. Two days later he had another paracentesis performed where yet another infection showed up, and he was rushed to hospital - so he was back within 10 days of leaving.

My brother refuses to stay in the hospital. He hates it intensely and refuses to go back under any circumstances - he has decided to die at home and will not stay even for emergency treatment. After 1.5 days he insisted on going home, despite the fact he still had not finished his IV antibiotics. I am going to stay with him in his house and try to help him manage, along with his girlfriend - but I am worried that the oral antibiotics will not be strong enough and that he will downgrade again before we have a chance to get him into hospice care. He has not been able to eat for many weeks and is very weak.

I guess what I am wondering is, given an unresolved peritoneal infection, and the gravity of his condition, what can we expect if his infection gets out of control if the oral antibiotics don't work. How do we as caregivers handle something like this? What might it look like and what do we need to watch for? My hope is that he will pull through this in next few days and will be ready to go to hospice. I am also wondering about diet - I am aware of the salt restrictions but is there anything that people have tried for his advanced state of malnutrition...I am arriving there tomorrow and would like to see if I can get him to eat so he can gain some strength. I think he drinks mostly juice.

Thanks in advance for the response.
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Chotti
Veteran Member
Joined : Oct 2013
Posts : 606
Posted 9/9/2020 8:43 PM (GMT -8)
Please ask a professional to evaluate him. He is not thinking right can be caused from the illness and he is suffering. Not cooperating for his own health and safety is the state of mind. His brain chemistry can be imbalanced caused by the health issues you have disclosed. That can be changed around once he is stabilized.

This is a difficult situation now and later once he has recovered he will thank you. He really does not want to die in pain and suffering . He need help ASAP. Sending blessing your way.
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SharonZ
Forum Moderator
Joined : Mar 2014
Posts : 3023
Posted 9/29/2020 11:53 AM (GMT -8)
Margwen:

I would look into having home hospice care, where your father gets more frequent visits dependent on his declining condition and is able to stay in his own home. Hospice was able to coordinate with the doctors for pain medication, and comfort measures in my father's last stage of lung cancer.

Sharon
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