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DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/8/2005 5:14 PM (GMT -7)   
Just wanted to move TinyJay's post to a new thread, so everyone could say "Hi" and offer their encouragement.
 
Here's her post:

Hello, Not sure if i'm doing this right, never been on a forum before.....Here goes...

My very good friend has been diagnosed with end stage liver disease. He is very yellow and has a swollen stomach. I took him to ER and they said he only has 10-15% of a working liver. I then took him to a gastro doc who said he only has a few weeks left. He doesn't want hospice, doesn't want surgery, doesn't want anyone to help him but me. He won't even let me call his family. He's always been kindof a loner, and I'm surprised he's even letting me help this much. But he won't let me come inside his home. Just let's me drop of meds, food, juice and that sortof of thing. I had him a phone hooked up in my name so he could call in an emergency. I'm just wondering what to expect next. What comes after the yellow and swollen stomach and severe diarrhea? He's on water pills and a beta-blocker. Does anyone know about how long he can go from this point? Thanks.  Please feel free to email me at
msmoothedge@aol.com with any information concerning this.<!-- Edit -->

Post Edited (tinyjay) : 8/7/2005 12:49:26 PM (GMT-6)


DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 8/8/2005 5:17 PM (GMT -7)   

Welcome, tinyjay.  I'm glad that you found us and your post is just fine. There's no right or wrong way to share your concerns.

A lot of things can happen to your friend now.

It would be good if you could be in the house to make sure he eats right. Low-protein (about 4-6 oz of meat or other protein per meal is often recommended), low-salt or no salt (salt makes the water in his legs and belly worse), lots of fruits and vegetables (it keeps his energy up and isn't as hard to digest, so the liver gets a break), meal substitutes (Ensure, for example, help when he's just not hungry, but hasn't eaten all day).  I actually kept a log of what Mark ate, calculated protein and sodium in everything.  Even had a diary of modified recipes that he could eat, that he liked, filled him up, and didn't upset his condition.

Medicines are really important.  The diuretics (Lasix and Aldactone, usually) will help with the water in his belly and legs. Lactulose is one of the most important meds he can take. Because of reduced liver functions, protein isn't digested properly and chemicals from the digestion process get into the bloodstream.  Ammonia is the biggest worry.  When it gets into the brain through the blood, it causes many problems: confusion, dizziness, mood changes, a kind of dementia. Lactulose binds to the proteins in the colon and removes them in the stool.
 
That's what the diarrhea is - his body getting rid of the poisons.  It's awful, but it's a very good thing.
 
We were very aggressive with Mark's care. From January 2004, when he was in very similar place to your friend, to June 2004, he was hospitalized monthly (sometimes twice in a month). The doctors gave him plasma and albumin to help with his blood cell count and the fluid in his belly;  they drained the fluid from his belly. I gave him epoitin shots every week, to help his body make more red blood cells. Toward the end, they were transfusing him and had him on IV antibiotics for an infection in the fluid in his belly.  Luckily, he was transplanted in June 2004.
 
I, personally, don't believe anyone can predict how long someone with ESLD will survive. There are so many ifs - if they take their meds, if the doctors aggressively treat the symptoms, if they give up, if they keep abusing alcohol.  All of these ifs can tip the scales to the good, or to the bad. It is a terminal condition, but so is life itself, actually.
 
He may not want hospice, or surgery, or anything right now. But that may be the ammonia in his system; that may be emotional shock from the diagnosis. That may very well change, if he can see that there are options, and if he takes his meds and starts feeling better.
 
Sorry for the long post.  Hope that helps a little.
 
If you have questions that I didn't answer or specific issues that you need to ask about, please keep posting. There are a lot of great, supportive people here who are happy to help.
 
He's lucky to have a good friend like you.  Be sure to let us know how you both are doing.
 
God bless you and keep you strong.

DJ

Fiance had HCV, cirrhosis, ESLD, ascites, and portal hypertension. Was transplanted June 2004.  Now, on interferon and ribavirin. Hepatitis C is back.

If God brings you to it, He will bring you through it.
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