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Posted 4/10/2010 6:58 PM (GMT 0)
   My cousin is suffering from End Stage Liver Disease.  she is on the transplant list but, it may be a long time before that happens.   I am taking care of her and she has been hospialized twice since December.   Today is a bad day for her, she is sleeping a lot and has leg cramps.   I try to do my best for her but, it does not seem enough.   Anyone have any insight on what else I can do?
Posted 4/10/2010 9:43 PM (GMT 0)

Mallshopper, welcome to the forum.  I know you will get a lot of information and support here.  I suggest you start by reading the folder at the top of the page entitled Hepatitis Resources, which has a section on ESLD.  Liver disease causes severe, chronic fatigue, so the sleeping is normal.  However, if she's sleeping 22 out of 24 hours, it's probably an indication of how sick she is.  Is she seen regularly at the transplant center?  If so, I suggest you go with her to her next appt. and voice your concerns and ask for ways to help her.  It's important that she take her meds and eat a healthful diet with no beef.  For transplant, one has to be sick enough to get a new liver but, at the same time, healthy enough to survive the surgery.  So it's a hard balancing act.

What is her ESLD from? 

Perhaps other caregivers here can give you some input.

Hugs,

Connie


Posted 4/12/2010 2:19 PM (GMT 0)
Dear mallshopper,

I am also a caregiver for my partner who has cirrhosis. It is a very difficult and time consuming committment, but your cousin is blessed to have someone to take care of her.

Some questions;

Do you live nearby?

How is her overall condition?

What center is she listed with?

Do you know her MELD score?

What meds is she on?

I am happy to help in any way that I can with advice, questions, or an ear to listen (or in this case, eyes to read posts!)

This site is amazing, and you'll find many great angels here as well as a boatload of information.

Blessings,

Rob
Posted 4/12/2010 7:19 PM (GMT 0)
My cousin has a1 Antitripptyline defincincey. In fact she is being admitted to the hospital again today, she has a swollen abdomen and feet. The docotr is going to do a tap and give her somemeds via IV.
Posted 4/12/2010 8:01 PM (GMT 0)

Mallshopper, you sent me to the Taber's medical encyclopedia for that one.  I found that alpha-1 antitrypsin (note spelling) deficiency is a rare, inherited disorder that is associated with early development of emphysema and also with early development of hepatitis in infants.  So I suspect she had developed hepatitis when young and it progressed to end-stage liver disease.

I hope she will feel better after her hospitalization.

Hugs,

Connie

Posted 4/23/2010 4:49 PM (GMT 0)
   My cousin came home from the hospital after haveing 8 liters removed.  She seems to be much better with her mental status but, is still having a problem with the Lactulose.  She is constantly running to the bathroom with diarreah.  Any suggestions on how to help with this?  Thanks for all your kind words.
Posted 4/23/2010 10:16 PM (GMT 0)
Mall shopper,  unfortunately there is no help for that.   The lactolose is removing the ammonia from you cousins body.......through BM's.  She should be having about 2-4 BM's a day.  Her doctor should be told if it more or less than what  he determines she should go.    It's a necessary evil in this disease.   

Take care.......thoughts and prayers........ 

Posted 4/23/2010 10:27 PM (GMT 0)
ms56, Is your cousin taking xifaxin as well as lactulose? There's nothing to be done as far as diarrhea from the lactulose. For 5 years, I didn't have a single solid bm. I did get well versed as to every public and a few private bathrooms around town. I also carried toilet paper wherever I went, and there were several times when it came on so suddenly, I had to jump out of my car and find a tree. Most mornings, the first hour was spent back and forth from the toilet. Ask about the xifaxin, it helps to get rid of ammonia. Be well. **David**
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