care giver advice

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sad need advice
New Member

Date Joined May 2009
Total Posts : 1
   Posted 5/23/2009 8:29 PM (GMT -7)   
Hi, I just joined this site today after researching advice as what to do for my husband in order to take care of me.
I just recently found out I have end stage liver disease and will be put on the top of the transplant list as soon as I complete the recovery program even though I quit drinking on my own a year ago.  I have been in the hospital twice, and this all started on Feb 13th.  I had no clue about any of this until I started researching it and still don't know alot. Anyway, my husband is stressed and confused as to how to take care of me and e fight all the time over it.  I don't know what to tell him or to expect.  Is there somewhere I can get a list on how to be a caregiver of a patient in my case?  I don't even know if I am going to live or die, because 3 months ago I was told I had 6 months to live at the most.  I have 5 months left of recovery and then I will be put on the list which will take longer.  Any advice for us?

Elite Member

Date Joined Jul 2005
Total Posts : 12014
   Posted 5/23/2009 10:15 PM (GMT -7)   

Hi, Sad.  Welcome to the forum!  I'm so sorry that you have been diagnosed with ESLD.  However, you will find a lot of information and support here.  Have you checked out our folder of Hepatitis Resources at the top of the page?  There are some educational threads in there that should help you.

You don't say what your current symptoms are and how (or if) they are being treated.  Do you know if your ammonia levels are high?  Are you on Lactulose?  How much are you sleeping?  Are you able to do ADLs (activities of daily living), such as making meals, keeping yourself clean, doing housework, etc.?  Are you working or at home?  All of these and much more determines how much care you need at this time and what type of care.  In instances where there is truly less than 6 mos. to live, Hospice can be called in for both respite and nursing care, as well as medication.  Are you in pain?  Exactly what is it that you and your husband are arguing about?

I'm very glad that you stopped drinking a year ago.  Congratulations!  I am a sober alcoholic myself (almost 23 yrs.) and have hep C.  I survived liver cancer, but the hep C makes me extremely fatigued, regardless of how much sleep I get.  However, I manage to do most things for myself and by myself.

What Transplant Center are you going to?  Have you asked them point blank what your prognosis is at this point?

If you can give us a bit more information, it will be easier for our members to offer suggestions or advice based on their own experiences and knowledge.  Also, it would help if you would not post in blue, but black...which is easier to read.

Forum moderator - Hepatitis
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 5/28/2009 2:33:24 PM (GMT-6)

Veteran Member

Date Joined Aug 2008
Total Posts : 613
   Posted 5/24/2009 7:30 PM (GMT -7)   
Hello, Sad and welcome to the forum. I am so sorry you have been diagnosed with this dreaded disease, but as you will see here there are quite a few patients and caregivers here that can support you through all this.

I am a caregiver. My husband has HepC/cirrhosis. He quit drinking almost 4 years ago, with the help of AA. I commend you for quitting drinking and want to encourage you to keep up the good work.

There, unfortunately, is no textbook answer I can tell you to pass on to your husband. But, speaking from experience, he is probably VERY overwhelmed with all this and probably just does not know how to deal with it. You must rememberr that as a man, he probably just wants to fix this and he can't which is all that much more frustrating for him. However, all that being said, he may want to get on here and post himself. For me, this forum has been such a great place for support for me. Also, the educational threads have been a life saver for me. What I can tell you is that he need to ask TONS of questions of the doctors, get as educated as he can on all this, and be an advocate. There will be times when you won't rememberr stuff, mainly due to elevated ammonia levels, etc. so It is verry important that he or someone be with you at all appointments.

You hang in there and I will be praying for you and your family through this time.


Regular Member

Date Joined Nov 2007
Total Posts : 460
   Posted 5/26/2009 2:14 AM (GMT -7)   
Hi Sad.

I am more or less in the same situation. I was diagnosed with cryptogenic liver disease ESLD, and given the diagnosis of 6 mo. as well. How ever that was two and a half years ago. I am physically ill mostly from osteoperosis ,degenerative disk disease, and osteoarthritis. I have minimal liver related, issues. My biggest problem is my memmory. Thankfully not long term , only short term. My care giver husband is so sick of me . That today he is not even speaking to me. I repeat alot of things, and forget alot. He is just fed up with me. He just says I don't pay attention ,he does not realize that this problem is not a matter of attention deficet diorder. It is a symptom of the disease. He refuses to read anything about care givers. He is an avid reader and knows all about the disease, but just won't believe I do stuff or say things he just doesn't understand. He thinks taking more lactulose is the answer.

Of course this is the only place I can come to. Everyone else is probably tired of hearing my same story every time I see them. I went for my six month check up , and they said I was OK at this time it just pain from arthritis . I am really at this point at the bottom of the list. But they continue to tell me the same thing every time I go. Because of the nature of my disease being unknown I could live 3 more years or get critically ill and require a transplant within 48 hours.

And get this I just got the paper work approving air transportation from my insurance. But the same week I had receive confirmation of early Medicare. Resulting in a must change insurance. So now I don't know if I will even have the same coverage or health care I had.  I am so sick of being a burdon on every one.................................................... june

Post Edited (june17) : 5/26/2009 3:23:50 AM (GMT-6)

New Member

Date Joined May 2009
Total Posts : 7
   Posted 5/28/2009 7:14 AM (GMT -7)   
June - so sorry for your dilemma. good luck with your husband
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