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End Stage liver failure
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End Stage liver failure

My very good friend (he is a 49 year old male) has recently been diagnosed with end stage liver failure.  He has Hepatitis C, Cirrhosis, Emphysema and COPD.  His meld number was 14.  His main symptom has been lethargy (he sleeps a lot) but recently he has been experiencing stomach pain.  What may be causing the stomach pain?  Could it be an abundance of blood in the abdomen?  That is what he thought he understood the doctor said.  
Please tell me your opinion of his prognosis and more of what to expect.  I'd like to know exactly what to expect.
He has been given conflicting amounts of time as far as his life expectancy.  One doctor said 3-6 months another said 9months to 2 years.  
They suggested he go on a liver transplant list but have not been too supportive and have left him on his own to deal with that.  I want to help him but I"m not sure where to start and what to do.  He lives in Boston.  Where is the best place for treatment for him.  I assumed Boston was cutting edge but just read online that Mayo Clinic in Florida is cutting edge.
He said he feels like he is just waiting to die!  This is heart wrenching to me and I feel helpless.  Please help me to help him.  I appreciate any advice.

Thank you
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517301_tn?1229801385
pain can be due to ascites fluid buildup and if its present it could be infected.  Boston is cutting edge but you need a high MELD score to be transplanted.  this is the reason why patients go to florida as one can be transplanted at lower MELD scores.  he must be proactive and push things,  I agree with him being placed on a liver transplant list.  he can be evaluated and listed in boston and then ultimately shift to florida.
10 Comments
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1135761_tn?1260560694
hi,
       What hospital diagnosed ESLD?  I'm from Boston and one year post liver transplant.  I can help direct you.  He needs a treatment Team ASAP!  Miracles happen and I am proof.  email me at ***@****.

Hang in there,

Bill
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Avatar_f_tn
Thank you so much.  I appreciate your response.  It was very helpful.  You were absolutely right!  He ended up in the hospital Sunday night because the pain got so bad.  They tapped his belly and found he was infected.  I wish his doctors  thought of this so he didn't have to suffer in pain for so long.  He had just had an endoscopy on Friday and some bands were put in.  He was thinking the pain was getting really bad because of that.  By the time Sunday night came he had enough and went to the hospital and that is when they realized he was infected.  
He was treated a couple of months ago for the infection but nobody ever told him his pain was a symptom of that.  He went on a course of flagelle and he went home.  The pain got better for a while but never went away.  I wish his docs thought to check him again so he didn't have to suffer for so long and end up in the hospital again.  Good news is that he is feeling much better now and is pain free.  He may be released from the hospital today but they now think he may have some internal bleeding.  
Any thoughts on this?
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Avatar_f_tn
Thanks for your comment Bill.  His doctors are affiliated with the Whidden Memorial in Everett.  I am not impressed with them at all.  They have suggested he go to Boston.  He has called Mass General and talked to somebody there in regard to transplants to get the ball rolling but from what I understand MG docs now have to speak with his docs. Who do you suggest for a team?  What hospital are they from?  I would love any help you can give us. Your email address has been bleeped out.
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517301_tn?1229801385
if he undergoes banding again he should receive prophylactic antibiotics.  There could be some bleeding regarding the diagnostic tap that he had.  SBP is a bad prognostic sign and means he should be transplanted ASAP.
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Avatar_m_tn
I am not speaking as Doctor, I just have a hustband who was diagonised with Cirrhosis of the about going on 3 years ago.  I do not know how hepitisit fits in, and you do not mention how he got cirrhosis of the liver, but since this happend to my husband, I have done a lot of research and reading for his conditon.  This helps tremendously, expecially in diet.  If the cirrhosis was from alchol, and still drink on top of diognose, the result is said to be 6 months to live.  If you follow the diets, I heard of someone living for 10 years after diognosed.  
This sounds awfuly quick, and he is so young. Also for a 14 meld score, that is low for such complications already.   To help his stomack,my hub  eat a lot of apples,  he has been eating mostly yellow apples.  He started as a 19 meld score, stayed stable and is now a 13, which I put in a question for that, but have had no replies, so I wonder myself.

Wish him the best of luck, health, and stay nutrious, and read a lot.
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Avatar_f_tn
Thank ladylinda700,
He did drink heavily as a teen till he was 25.  He got sober at 25 and didn't drink again till he was 35.  He drank pretty heavily again for about four years and then got sober again and hasn't touched a drop in ten years.  He also did some drugs and was a steroid user when he was drinking.  I wonder how much of that damage was from the steroid use.
Thanks for your encouragement.  I will pass your suggestion about adding more apples to his diet and to concentrate on nutrition.  Take care and the best of luck to you and your husband.
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Avatar_f_tn
Thanks for your reply.  I will make sure he asks his dr. about taking prophylactic antibiotics.  He is scheduled for another endoscopy and probable banding on Feb. 3.  If SBP (I assume that means he had a need for banding) is a bad sign.  Why is his MELD number so good.  He told me that while in the hospital it actually went down to 9!!  What are his chances of receiving a transplant with a MELD of 9?  What should we do first?
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517301_tn?1229801385
the chances of receiving a transplant below a MELD score of 15 is very unlikely.  he might need to consider a live donor.  please speak about all of these issues with his liver docs.
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Avatar_f_tn
Ok thak you.
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Thomas D Schiano, MDBlank
The Mount Sinai Medical Center
New York, NY
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