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Posted 7/23/2011 11:53 PM (GMT 0)
Is there anyone out there that can help me in determining what I can do.  My husband is listed on a liver transplant list and has a MELD score of 22.  His weight has gone from 210 to 136 lbs (as of yesterday).  He saw the doctor yesterday after having 7 ltrs of fluid removed from his abdomen and was encouraged to "hang in there and keep moving" because the transplant is the only thing that will help.  My problem is that he is shutting down mentally and physically.  He takes his meds as instructed but we are now at the point I have trouble helping him to the bathroom and he even loses his direction in a house we have lived in for 47 years.  I am drained emotionally and physically.  People offer to help but I am striving to preserve his dignity and having someone else "cleaning him up" is not an option.  Has anyone else dealt with this?  I know I cannot contact Hospice for help because he is on the transplant list.  His heart, kidneys and BP are good but losing muscle and movement.  I am just so frustrated and open to any suggestions. 

Thanks

Posted 7/24/2011 12:27 AM (GMT 0)
I know exactly what you're going through - I know how difficult it is for you.  My husband received his liver February 3, 2011; prior to transplant he was so thin (actually still is but is building some muscle mass).  He spent most of his time sleeping and going to the bathroom.   I kept thinking he surely couldn't go on.  I finally asked the doctor how long he had and the doctor told me - he has a long as it takes to get the transplant.  Ron had a MELD score of 25 just weeks from a 28.......and the transplant came.    We felt like it would never happen, most of the time, we just didn't talk to each other about it - it was unspoken....the transplant happened.  So try not to be discouraged and visit the forum - we're always here. 
Posted 7/24/2011 12:54 AM (GMT 0)
Gnet,
It sounds as though your husband needs to up his doses of lactulose. Also, is he taking xifaxin? That helps rid ones system of excess ammonia, which leads to confusion. Get rid of that problem and some of his other problems should be easier to deal with.
Posted 7/24/2011 3:38 PM (GMT 0)
Is taking Zifaxin twice a day and upped the Lactulose which led to lot of other problems and did not decrease confusion (told the doctor). Last night I was wondering how to get a hospital bed and then today he is "somewhat" better in that he did feed himself breakfast. This forum has been a God send for information and to learn that what I am experiencing is not unusual.

Thanks
Posted 7/24/2011 6:10 PM (GMT 0)

Gnet, if you get a prescription for a hospital bed (or walker, bedside commode, etc.) from your husband's doctor, it can be obtained from a medical supply company that bills Medicare or Medicaid (if your hubby has that.)  It is considered durable medical equipment and insurance should pay for it.  Even if it's not covered, go through a medical supply company that delivers.  It doesn't cost much to rent one.

Hugs,

Connie

Posted 7/25/2011 10:59 PM (GMT 0)
Thank you!
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