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Old 04-01-2012, 11:41 PM   #1
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Unhappy End stage liver disease

My mom has end stage liver disease from Hep C. She received a transplant 15 years ago but is now suffering from all the symptoms of End stage liver disease. The doctor has recommended Hospice for the last year. My father finally agreed to get Hospice involved. My question is: what should we expect? She is in bad shape, they are putting a pick line in her abdomin to drain the fluid, can we expect that to help.

 
Old 04-05-2012, 04:23 PM   #2
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Re: End stage liver disease

Quote:
Originally Posted by CJ1963 View Post
My mom has end stage liver disease from Hep C. She received a transplant 15 years ago but is now suffering from all the symptoms of End stage liver disease. The doctor has recommended Hospice for the last year. My father finally agreed to get Hospice involved. My question is: what should we expect? She is in bad shape, they are putting a pick line in her abdomin to drain the fluid, can we expect that to help.
I'm sorry to hear about your mom's condition. If your doctor has recommended Hospice, then it sounds like your mom is nearing the end of life. The focus on Hospice is to get your mom the best care in terms of her comfort. In hospice care, they still will provide your mom medications and will do their best to take good care of your mother, the focus though is shifted on her comfort. Therefore medications that doesn't meet that goal will be discontinued. On the other hand, medications such as pain meds will be continued.

I believe the Pick line will help to reduce the amount of swelling in her abdomen, therefore it will allow her to be more comfortable.

 
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Old 04-06-2012, 08:20 AM   #3
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Re: End stage liver disease

Thank you! The pick line has relieved some of her discomfort.

 
Old 04-06-2012, 12:40 PM   #4
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Re: End stage liver disease

Quote:
Originally Posted by CJ1963 View Post
My mom has end stage liver disease from Hep C. She received a transplant 15 years ago but is now suffering from all the symptoms of End stage liver disease. The doctor has recommended Hospice for the last year. My father finally agreed to get Hospice involved. My question is: what should we expect? She is in bad shape, they are putting a pick line in her abdomin to drain the fluid, can we expect that to help.
I also have Hep. C for many years I found out in 1993 I haven't had a biopsy in years, no medical insurace. I hope your Mom does o.k. hospice will make sure that she is not suffering and help her with medical that she needs. Do you mind if I ask how old she was and how long it took to get to end stage liver disease? I am scared I have it I feel terrible, I always feel like i am coming fown with the flu but I never get it a headace abdominal swelling, Went on interferon study and i pulled myself off and Doc said I can never been treated with Interferon again, thats o.k. Because what I know I wouldn't do it to myslef again to just have it come back. Its not worth it. I used to see who I think is one of the best dr.s up at scripps clinic in La Jolla,ca. But with no insurance I havent been seen for many years and scared, I have to work and I dont know how i do it but I have no option gotta have a place to live. Anyhow what did she experience (symptoms)Before transplant? I just wonder what do I have coming? I really hope she does o.k.

 
Old 04-06-2012, 02:13 PM   #5
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Re: End stage liver disease

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Originally Posted by jenajay View Post
I also have Hep. C for many years I found out in 1993 I haven't had a biopsy in years, no medical insurace. I hope your Mom does o.k. hospice will make sure that she is not suffering and help her with medical that she needs. Do you mind if I ask how old she was and how long it took to get to end stage liver disease? I am scared I have it I feel terrible, I always feel like i am coming fown with the flu but I never get it a headace abdominal swelling, Went on interferon study and i pulled myself off and Doc said I can never been treated with Interferon again, thats o.k. Because what I know I wouldn't do it to myslef again to just have it come back. Its not worth it. I used to see who I think is one of the best dr.s up at scripps clinic in La Jolla,ca. But with no insurance I havent been seen for many years and scared, I have to work and I dont know how i do it but I have no option gotta have a place to live. Anyhow what did she experience (symptoms)Before transplant? I just wonder what do I have coming? I really hope she does o.k.
Thank you for your reply. I hope everything goes good for you. My mom was diagnosed with Hep C in 1987 just shortly after they discovered that Hep C existed. She contacted it through a blood transfusion when she had my sister. She must have been 25 at that time. It took 19 years for the Hep C to distroy her liver. She was battling fatigue, flu like symptoms for several years before she was diagnosed, she also complained of pain in her stomach just below her right rib area. Just before the transplant she had mental confusion and fluid retention as well as severe fatigue. She received her transplant in 1998 and did very well up until the last 4 years. They only gave 5 to 10 years after transplant. I hope this helps it appears that everyone responds differently.

 
Old 04-13-2012, 03:58 PM   #6
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Re: End stage liver disease

what you can expect is that she will die. She will die with or without hospice. How she dies is a different thing
hospice is about dying as comfortable and pain free as possible but they dont ever treat for anything. they will tube feed only if she has a tube feed in place but will not have her get a tube put in.
They will give meds to break fevor or control it but not cure what causing the fever. they will not allow or give her antiboties for anything. If she get something that treatable it will not be allowed
what they will do is to make her death as painfree and comfortable as possible. s giving oxygen if required
They are a good outfit but they should not be used until you have to.
is your mother alert? If so it should be her decision whether she accepts hospice or not.

Last edited by package deal; 04-13-2012 at 04:03 PM.

 
Old 04-27-2012, 11:21 AM   #7
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Re: End stage liver disease

Sweetie dear,
I am so sorry on your mom's sickness. My mom has B and C and I know what you are talking about.
In our family 2 family members went though Hospice and in the beginning we hesitated as well: what a mistake!
I wish we would send them to have Hospice care from the minute DR suggested. They make them feel so good, people working there trained, they are so special and tender, understanding. They keep patients very comfortable, they dont let them be in pain, they send to them professionals who kind of "preparing them for death. Not literally, but they are talking, making piece for their souls.
You did right, your mommy will be in a good place, trust me.

Hugs to you and best wishes
Moldova

 
Old 04-27-2012, 01:27 PM   #8
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Re: End stage liver disease

Thank you.

 
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