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Old 10-17-2012, 09:13 AM   #1
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Question endstage liver disease

My husband has been diagnosed with only a few months to live. I need imformation. He sleeps a lot , always tired & week. Doesn't each much , mostly cereals & candy. Sometimes he doesn't even walk outside for days at a time . Does anyone have any advice as to , what I can expect to see as he continues to decline

Last edited by ladylegg; 10-17-2012 at 11:12 AM. Reason: Editing , for more details

 
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Old 10-17-2012, 10:17 AM   #2
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Re: endstage liver disease

Since your post is short with very little info, I will responed in general, and if you have more specific questions, please post again. First of all, I am very sorry you have received such sad news. Do you know what has caused his liver failure? Whenever someone's prognosis for survival is less than 6 months, they are eligible for hospice care. That can be assessed now, then started whenever you and husband feel ready for it. It is a wonderful support system for patients and families, and I would highly recommend you get a referral for Hospice from his Dr. They will explain in depth how the program works, and you can decide if and when you want to start it. They provide services for patients at home, and also inpatient services if that is needed.
The physical aspects of liver failure are many, and one is confusion and lethargy. I would advise that any financial or legal affairs be taken care of as early as possible while his mental functions are still clear. You can research symptoms of hepatic failure to be prepared for the changes he may experience. Being prepared is half of the battle in coping with the decline in health. I would also encourage you to anticipate what resources you have in the way of insurance coverage, veteran's benefits, family members who can help, who can provide respite for caregiving so you are not working 24/7 to care for him by yourself. The more you can do now to anticiopate and prepare, the less stressful it will be later on, and you will feel more in control of what is happening. That's a handful for starters, so I'll leave it at this. I would get a notebook to keep all the phone numbers, resource info, etc. handy and organized as you accumulate information. You will find this board helpful and supportive, so glad you found us!

 
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Old 10-17-2012, 10:58 AM   #3
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Re: endstage liver disease

Quote:
Originally Posted by ladybud View Post
Since your post is short with very little info, I will responed in general, and if you have more specific questions, please post again. First of all, I am very sorry you have received such sad news. Do you know what has caused his liver failure? Whenever someone's prognosis for survival is less than 6 months, they are eligible for hospice care. That can be assessed now, then started whenever you and husband feel ready for it. It is a wonderful support system for patients and families, and I would highly recommend you get a referral for Hospice from his Dr. They will explain in depth how the program works, and you can decide if and when you want to start it. They provide services for patients at home, and also inpatient services if that is needed.
The physical aspects of liver failure are many, and one is confusion and lethargy. I would advise that any financial or legal affairs be taken care of as early as possible while his mental functions are still clear. You can research symptoms of hepatic failure to be prepared for the changes he may experience. Being prepared is half of the battle in coping with the decline in health. I would also encourage you to anticipate what resources you have in the way of insurance coverage, veteran's benefits, family members who can help, who can provide respite for caregiving so you are not working 24/7 to care for him by yourself. The more you can do now to anticiopate and prepare, the less stressful it will be later on, and you will feel more in control of what is happening. That's a handful for starters, so I'll leave it at this. I would get a notebook to keep all the phone numbers, resource info, etc. handy and organized as you accumulate information. You will find this board helpful and supportive, so glad you found us!
Thanks for your'e reply. My husband contracted Heptitis C , as a child living over Seas , he partied a lot in his younger years , and ended up with Cirosis . In Jan. of 2011 , I came home from work and found him burning up with fever. I got him to the ER , and he was on the verge of Liver failure. He , went through several rounds of Chemo-Emboliation. The last was in March of 2012 , when he went back for his 3 month check up they siad his levels are too low for any more Chemo. July 12, the Dr. said he has 6 to 8 months , possibly a year. I am an elderly Caregiver , and we got him on Hospice last week. They are great ! My husband turned 57 last week. He and my 97 yr olf client , have the same nurse. I'm having a hard time coping , with my husband's illness. Work is my only outlet. Ladylegg

 
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Old 10-18-2012, 12:08 PM   #4
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Re: endstage liver disease

So sorry to hear about what you are going through. My late husband contracted Hep C - never sure where - way back, had been told he had it but was never monitored as he should have been. Neither of us was aware of the dangers or risks, and my late husband was diagnosed with liver cancer on 11/11/2011. He passed on 4/27/2012, way more quickly than either of us were expecting.

My husband never really had the opportunity to fully take advantage of all that hospice could offer. They entered the picture just over 24 hours before he died. However, some of the things he went through were:

1. A lot of sleeping, very little energy

2. No appetite, and a lot of things would upset his stomach. I went with whatever he could eat: pudding and jello, lots of juice, and Ensure.

3. He complained of upset stomach (not sure if that was true), but he wanted Tums and I simply gave them to him. They made him feel better.

4. He had a lot of bathroom issues, specifically constipation.

5. He would become bloated because he would fill with fluid. This would cause a good deal of discomfort, and we would go to the Doctor/ER and they would drain his abdomen. He would be more comfortable; however, this was only temporary. He would fill with fluid again, and even more and more quickly than before. Be prepared for this. This is something that happens with liver disease.

6. Pain. I don't think I fully comprehended exactly how much pain my husband was in. It's important to give him access to as much pain medication as is necessary to make him comfortable.

My heart really goes out to you. This is a difficult place for anyone to be. Make the most of having your husband in your life. Treasure every moment. Sending hugs and prayers your way.

 
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Old 11-10-2012, 08:57 PM   #5
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Re: endstage liver disease

Quote:
Originally Posted by ladylegg View Post
My husband has been diagnosed with only a few months to live. I need imformation. He sleeps a lot , always tired & week. Doesn't each much , mostly cereals & candy. Sometimes he doesn't even walk outside for days at a time . Does anyone have any advice as to , what I can expect to see as he continues to decline
Hi. My husband was diagnosed in Nov.2011 . He was in the very last stage of cirrhosis by this time. You can expect that there will be times when he gets confused.EX...My husband was looking for "eggs" on the couch,would pick up the remote and stare at at,confused as how to work it,things like that. Is your husband taking Lactulose? They give this to them for a laxative so that he goes to the bath. frequently and gets rid of the amonia levels which if elevated will cause confusion.It can only be expelled through bowel movements. One thing I want to tell you is CALL HOSPICE! They are SOO HELPFUL in going through a terminal illness! You can expect him swelling up with fluid-feet,hands and abdomen. If it gets too bad they can do a paracentesis,which is draining off fluid. Alot of weight loss.As it progresses he'll get really weak and come to a point where he can't stand or walk by himself. Nausea,maybe. They have pills for that. Alot of pain in the torso,back,legs. Shortness of breath. Now that my husband is nearing the end he doesn't speak at all unless he's asked something. Then sometimes he even won't.Loss of appetite gradually gets worse til they barely eat anything. Trouble swallowing. If you want any more info just ask. I have been through exactly what you are going through! Good luck and God bless.

 
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Old 11-10-2012, 09:03 PM   #6
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Re: endstage liver disease

One more thing,Hospice gave him 6 months at most in Jan.2012 and he is still holding on. Barely.

 
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Old 11-11-2012, 01:36 PM   #7
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Re: endstage liver disease

Quote:
Originally Posted by ladybud View Post
Since your post is short with very little info, I will responed in general, and if you have more specific questions, please post again. First of all, I am very sorry you have received such sad news. Do you know what has caused his liver failure? Whenever someone's prognosis for survival is less than 6 months, they are eligible for hospice care. That can be assessed now, then started whenever you and husband feel ready for it. It is a wonderful support system for patients and families, and I would highly recommend you get a referral for Hospice from his Dr. They will explain in depth how the program works, and you can decide if and when you want to start it. They provide services for patients at home, and also inpatient services if that is needed.
The physical aspects of liver failure are many, and one is confusion and lethargy. I would advise that any financial or legal affairs be taken care of as early as possible while his mental functions are still clear. You can research symptoms of hepatic failure to be prepared for the changes he may experience. Being prepared is half of the battle in coping with the decline in health. I would also encourage you to anticipate what resources you have in the way of insurance coverage, veteran's benefits, family members who can help, who can provide respite for caregiving so you are not working 24/7 to care for him by yourself. The more you can do now to anticiopate and prepare, the less stressful it will be later on, and you will feel more in control of what is happening. That's a handful for starters, so I'll leave it at this. I would get a notebook to keep all the phone numbers, resource info, etc. handy and organized as you accumulate information. You will find this board helpful and supportive, so glad you found us!

 
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Old 11-11-2012, 02:03 PM   #8
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Re: endstage liver disease

Thank you so much for shareing your'e experience . We do have Hospice now , and they are wonderfull. My husband does take Lactulose , as well as 2 water pills . He has recently started haveing the nausia and has been put on a medication for it as well. He has fluid build up & blotting , his feet aren't swelling at this time . The Dr. says the fluid isn't enough to drain , that it would be too much of a risk of him possibly bleeding out . His Dr. said they won't do anything about the fluid , until it starts putting pressure on his lungs , and causing breathing problems. The worst of his pain , seems to be in the bowels , caused by the laculose. He has back & hip injuries as well. He uses fentynol pain patches , and strong pain meds as well , but his pain level rarely goes below 6. Last Tues. the Dr. seemed surprised that , he's as well as he is . His nurse gave me a booklet that talks about the final months . It's called ' Gone From My Sight' and it seems like , he's very close to that time frame. Thanks , and God Bless you too.

 
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Old 11-11-2012, 06:38 PM   #9
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Re: endstage liver disease

Quote:
Originally Posted by ladylegg View Post
Thank you so much for shareing your'e experience . We do have Hospice now , and they are wonderfull. My husband does take Lactulose , as well as 2 water pills . He has recently started haveing the nausia and has been put on a medication for it as well. He has fluid build up & blotting , his feet aren't swelling at this time . The Dr. says the fluid isn't enough to drain , that it would be too much of a risk of him possibly bleeding out . His Dr. said they won't do anything about the fluid , until it starts putting pressure on his lungs , and causing breathing problems. The worst of his pain , seems to be in the bowels , caused by the laculose. He has back & hip injuries as well. He uses fentynol pain patches , and strong pain meds as well , but his pain level rarely goes below 6. Last Tues. the Dr. seemed surprised that , he's as well as he is . His nurse gave me a booklet that talks about the final months . It's called ' Gone From My Sight' and it seems like , he's very close to that time frame. Thanks , and God Bless you too.
Yes I have read that book..alot of info. there. May God give you strength and comfort.

 
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Old 11-11-2012, 09:55 PM   #10
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Re: endstage liver disease

How are you coping , I'm still trying to find more info. I just need some direction , all Hospice has offered as far as litureature is on dying , nothing about the desease. Google search , brought me to this sight and I greatly appreciate it. Do you know of any other reserch sites available. Please pardon my spelling . I'm a private duty care-giver , and use pen & papper , no spell checker there . My husband has the same Hospice agency & Nurse as my client , which seems great ! Sad , but true I think my 97 yr. old client with out-live my 57 yr. old husband. However I haven't talked with our Social worker in dept. , just trying to shelter my husband , as much as possible . Any advice would be greatly appreciated ! Kim

 
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Old 11-13-2012, 04:06 PM   #11
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Re: endstage liver disease

I would do an online search for symptoms of cirrhosis. You will find a lot of info there for physical signs and symptoms that can occur so you can be prepared and understand. Researching the normal functions of the liver will also help you understand some of the problems that occur with liver failure. As the liver fails, the kidneys start to fail, so there will be overlap between the two. I hope that helps you. It is important to understand the dying process, but even more important to keep living these days, weeks or months in the best way possible for you both.

 
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Old 11-14-2012, 12:11 PM   #12
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Re: endstage liver disease

Thank You soo much , I'll follow that link .

 
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