End Stage Liver Disease - First time user

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Nikki19
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/20/2009 1:06 PM (GMT -7)   
My husband was diagnosed about 4 months ago with end stage liver disease.  He has been in and out of the hospital several times for various reasons.  He has had fluid drained from his stomach at least 4 times.  He is taking lasix, spironolactone and lactulose.  He seems the strongest in th morning he gets weaker later in the day.   he can not walk on his own he uses a walker when he feels like getting out of bed. He has difficulty sleeping and keeps me up most of the night.  He is very thin and looks malnutrien.  We are in the process of making an appt with a hepatologist so that we can work on him getting evaluated and listed.  He has been sober for only 4 months and has AA people come to the house since he is too weak to travel anywhere.  I have read several posts speaking about people going into comas when does that happen and will i see it coming.  At night it seems like he is dreaming saying random things is that an onset to a coma?  My husband is 43 years old and wants to live..we have two girls which gives him his will to live.   What can I expect in the near future for his condition? 
 
Please help...getting scared.
 
Thanks and God Bless

Splashdancer
Veteran Member


Date Joined Aug 2009
Total Posts : 927
   Posted 9/20/2009 1:18 PM (GMT -7)   
Hi Nikki19! I post on the Chronic Pain forum, but your post caught my eye and I had to respond. I know very little about the subject of end stage liver disease but I just wanted to say that I will pray for you, your husband, and your family. You will be in my thoughts. I have never been in your exact position, but I do know some of what you are feeling. If you need a shoulder, I am here.

Nikki19
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/20/2009 1:47 PM (GMT -7)   
Hi splahdancer...thank you for your kind thoughts..hope all is well with you. 
 
God Bless
 
Nikki

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/20/2009 2:06 PM (GMT -7)   

Hi, Nikki!  First of all, I want to welcome you to the forum...though I'm sorry you have to be here.  It seems that your husband's liver disease was caused by alcohol abuse, is this correct?  He certainly does need to be seeing a liver specialist (hepatologist), so I hope you will be able to get an appt. for him soon.  It is good that he is involved with AA.  Make sure that it is documented.  Did he just suddenly get sick or has it been coming on for awhile?

It's impossible to say if he is going into a coma...that's for a doctor to determine.  But I will say that I doubt it.  The random things he says are probably in his dreams, especially if he is having restless sleep.  In a coma, he will be unresponsive to stimulii.

I suggest you read the information in the Hepatitis Resources folder at the top of the Hepatitis Forum page.  There is some good educational material in there, from which you can learn a lot.  You will also get a lot of support from the people here.

Have you tried giving your husband Ensure or Boost for nutrition?  Get what food you can into him, but do stay away from beef.  It is hard for the liver to digest.  Give him plenty of fresh fruits and veggies, and some chicken and fish.  Keep to a salt-free diet.  Use salt substitutes or lemon juice.

Your husband's youth is on his side.  Don't lose hope.  His stopping drinking is the single best thing he could do for his liver.  By the time he sees a hepatologist and gets referred to a transplant center, he should be able to be evaluated for transplant.  There is a lot of physical and psychological testing involved in that.  Keep the faith!

My thoughts and prayers are with all of you.

Hugs,

Connie

 

 


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


Nikki19
New Member


Date Joined Sep 2009
Total Posts : 6
   Posted 9/22/2009 9:32 AM (GMT -7)   
Hi  Rick thank you for your post.  It sounds like my husband and you have a lot in common.  How did you gain your strength back to be able to walk, etc.  Can you give me some input on the medication.  My husband seems to get sick when he takes the lasix spirolactone and lactulose,  did you get sick after taking it.   His ascites has come back again within a week what should I do?   Can you give me some more information regarding getting a specialist to see my husband and what needs to be done.  I made an appointment with a hepatologist but the only appointment available was Nov. 6.  I don't know but doesn't he need to see someone sooner than that?  I went ahead and took that appointment.  So many questions but it seems like you know what we are going through.
 
Thank you so much I appreciate your help.
 
God Bless!

deedee48
Regular Member


Date Joined Aug 2009
Total Posts : 148
   Posted 9/22/2009 7:12 PM (GMT -7)   

Nikki,I feel for you and your husband, this is a rough road to go down but you  have to be optimistic.

My thoughts and prayers are with you both,

Dee


hope076
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/16/2009 2:34 PM (GMT -7)   
Hey Nicki, I am going thru the same thing with the father of my five month old and the love of my life. It has been almost four years since he quit drinking and doing drugs. He has hep c which has contributed to our dilema. He has been in for massive GI. bleeds several times, as well as raised enzymes, acites, and has several Large varices in his esophagus which have had to be banded. I finally figured out how to get him in with specialists. It's a matter of finding the right emergency room/hospital. Yale New HAVEN in CT. has a liver team that has been great. It took realizing that all the others were doingwas patching him up and had nowhere to send himto see, no specialists. The discharge instructions threw us to the wolves. The trouble now is that hehas acites and can't seemto stayout of tjhe hospital long enough to make it to his transplant assessment appointment. He's outtwo days and needs to be admitted again. With your situation, my two concerns are that first of all, i was told that you need to stop drinking at least three years to be considered for a transplant. Also, any dental work should be completed prior to the surgery. It is a process to gety dental work done with liver disease. Good luck. If you have any questions, feel free to ask. Just know you are not alone in this. How is he doing these days? I will keep him in my prayers.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/16/2009 3:03 PM (GMT -7)   

Hope, I want to welcome you to the forum.  You picked up on an old post from Sept.  Unfortunately, Nikki hasn't posted since then.

My understanding is that most transplant centers require 6 mos. of documented sobriety with alcohol counseling or AA attendance in order to be evaluated for a transplant, but it varies some with each center.  I've never heard of any place requiring 3 yrs.  It is great that your partner has been clean and sober for 4 yrs., though!  I also have hep C and have been alcohol and drug free for 23 yrs.

Has anyone mentioned TIPS to your b.f. for fluid buildup?

I suggest you start a new topic to introduce yourself and your situation to others here.  You will find a lot of support on this forum.

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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