My mother has ESLD, her MELD score is 32 she's on dialysis and they are sending her home.

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kris0510
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Date Joined Jun 2010
Total Posts : 3
   Posted 6/10/2010 12:11 PM (GMT -7)   
She got sick early this year and may 7th we took her to the hospital. They found the End stage renal and the end stage liver she is 63 and has RA as well. She can't walk she is having painful BM's on the hour almost and she can't really talk and now today the doctors say they are sending home. I am so confused. Are they sending her home to die? I dont understand what is happening to her, no body really says anything about her liver, its always been about her kidneys since we got to the hospital. Yesterday they told her she could just eat whatever she wants now and I thought with kidney and liver problems you have to be on a strickt diet.Please if any of this makes sense to you please tell me what you think. I just don't knowwhattodo. The doctors don't seem towanna talk to me about whats really going on. I had to get a copy of her charts to even find out about the ESLD.

arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 6/10/2010 1:08 PM (GMT -7)   
You're right about diet... and you may be right about what they are saying... but even with that.. she should be watching her diet.. cuz even now it can prolong life.. to be eating the right things and certainly if she is constipated.. can make a difference there but I'm sure the moderator will help with more.. my thoughts and prayers are with you.. sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom


**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 6/10/2010 2:57 PM (GMT -7)   
You need to get answers from the doctors. If need be, see if a Hepatologist is involved and speak to them. Should your mother be end stage, both liver and renal, it does sound as if they've done as much as possible.
"No good deed goes unpunished."


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 3:15 PM (GMT -7)   

Hi, Kris, and welcome to the forum.  I'm sorry for the reason you find yourself here, though.  cry    It would seem that your mom would need a double transplant--both kidney and liver.  So the doctors may feel she is either not well enough to endure that or that she would not live long enough to receive them.  Did she just suddenly become ill or has she had kidney issues for awhile?  Also, the symptoms you are describing sound as though she has some encephalopathy due to high ammonia levels.  This is usually treated with Lactulose, where the ammonia is eliminated through BMs.  Have they been giving her that?  If I were in your position, I think I'd want to speak to her hepatologist, if she has one, or get a referral to one.  The kidney issue is being dealt with via dialysis, so I imagine she will be seeing a nephrologist (kidney specialist.)

Regardless of the situation, she might feel better if she eats a diet free of red meat and high in fresh fruits and veggies.  No alcohol at all.  Nothing fried.  If she is not retaining fluid, make sure she stays hydrated with water.

I hope this helps a little, but as David suggested, you really need more direct answers from the doctors.  In the medical records you were able to obtain, did they give a prognosis?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


kris0510
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Date Joined Jun 2010
Total Posts : 3
   Posted 6/10/2010 3:49 PM (GMT -7)   
She became ill very suddenly. Before May we only knew about the RA. Her BM's are very frequent and the stools are very loose, which has made more problems. She has really bad bed sores.

They don't say anything to us about her ammonia levels or taking the Lactulose. There was no Prognosis in the charts ( they wouldn't even give us her whole chart) . What bothers me is they don't say ANYTHING about her liver at all. I am worried they are just giving up and not saying so. Ya know,if this is not going to end well I can understand that but I need to know before they send her home what i should expect.

I know she is retaining fluid because they have her on double dialysis to help remove the fluid.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 4:15 PM (GMT -7)   

The loose stools could be from Lactulose.  That's what it does.  Was there a type of liver disease specified?  Since she has RA (an autoimmune disease), it could be Autoimmune Hepatitis (AIH.)  What do you mean by "double dialysis?"  Dialysis is normally done 3 or 4 times a week.  Do you mean the formula they are using for dialysis?  You really do need to pin down her doctors.  Ask what her discharge plan is going to be.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


kris0510
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/10/2010 4:27 PM (GMT -7)   
They have been trying to Get rid of the loose stools since she got to the hospital. The liver they said is Non alcoholic Fatty liver disease. They started doing her dialysis they said like everyday because half the time they would be pulling fluid off her. They have gone through several different medications trying to thicken up her BMs even Amodium . They say they have no idea why its like that. It was diarrhea for most of her hospitalization and is only now thickening up .

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2010 7:21 PM (GMT -7)   

Okay, so it's not Lactulose causing the diarrhea.  And she has NASH (Non-Alcoholic Steatohepatitis), the medical term for fatty liver disease.  Treatment normally includes losing weight.

If you cannot get more information out of the doctors, you may need to get a Medical Surrogacy so that you can obtain all her medical records and also can make medical decisions for her if she is unable to do so.  She also should have a Living Will if she doesn't already have one.  It depends on how involved you want to be in her care.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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