HealingWell
Search Close Search
☰

End Stage Liver Disease

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted Yesterday 6:48 AM (GMT 0)

My husband was diagnosed with end stage liver disease Summer 2010.  Now he is yellow (skin and eyes), painfully thin, huge extended abdoman, oozing cellulitis ( legs are a mess with constant drip) itchy and flakey skin and very smelly & sometimes confued.  Doc estimated 8 liters of fluid in abdomen.

Doc says another abdomen tap is risky as the fluid returns so fast....

Trouble walking, bad balance, shaley voice, no fever, some appetite, exhausted.

My husband is on a hospital bed in the living room.  Started hospice today. 

We were in the ER on Saturday.  Doc would not give us a time frame   - says liver is

not fully functioning.  No details etc...

Lactose, Lasix, ambien, xanax, 2 antibiotics +++

Can anyone give me a guess on a time frame?  3 weeks? 10 weeks? 6 months?

Posted Yesterday 7:27 AM (GMT 0)
No one can tell you that accurately... each person is different.. Sandi
Posted Yesterday 9:59 AM (GMT 0)
My ex is on a transplant list now and he has all the symptoms your husband has even more. I tell you this disease can sometimes take you quickly and in my ex's case? hes been at end stage for longer than 10 years and looks like he might be hanging in there for awhile yet. He also has the plate in his chest a pump and many more objects inserted in his body.But, hes still kicking around just saw him in a pic and though hes looking a bit scraggly(not shaven) he seemed to be in good spirits . I think the worst part is the fluid in legs and abdomen . Good Luck to you,. The truth is there is no time frame death comes when it comes take it day by day and enjoy what you can. I know its hard when you cant seem to get a time on the death thing but its all a part of life, somethings are meant for us not to know.

Post Edited (purplemonkey) : 11/29/2010 3:03:12 AM (GMT-7)

Posted Yesterday 11:49 AM (GMT 0)
I am sorry your husband is so ill, i can not give you advice on how long he has to live,as otheres have said sometimes this disease plays with our heads.just as we think our loved ones may be a little better ,they start to decline.I have asked the docs this question of how long to live with my darling father,an never got a straight answer.However you begin to realise some indicators yourself,one of them being doctors stop all medication,kidney function starts to lesson.they wont drain the fluid as no point,these are things docs did with my dad,so once that happens,even though i have to say not true in every case,my dad lasted 3 weeks.I wish you strenth to deal with the situation with your hubby, take care spooky
Posted Yesterday 1:55 PM (GMT 0)
Hello 3118 and welcome to HealingWell.  So sorry about your husband.  Hospice is a great organization though.......they will be just as much help to you as to your husband during this time.   As everyone has said........liver disease is very individualistic.  It patient has a slightly different path.   From him being diagnosed this past summer to Hospice by autumn.........that's a real fast decline.  Normally the journey takes longer than a few months to that stage.  He must have had the disease quite a spell before diagnosis. 

Once the hospice nurse has seen your husband a few times and has a chance to get to know your husband.......she maybe able to give you some kind of answer......

If Hospice has volunteers to help you.......take advantage of it and get out for a little while.......shopping, walking or what ever calms you down.   You need to take care of yourself during this time.....or you will end up in a hospital bed.  I am serious.....it almost happened to me.  

Also we have a caregiver's thread ........so anytime you need to vent about your feelings you are more than welcome to post on it also.    

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

Posted Yesterday 6:59 PM (GMT 0)
3118ord and Purple Monkey, just wanted to welcome you both to the forum.  I can only echo what others have said.  Also, check out the folder at the top of the main page entitled Hepatitis Resources for a lot of info on ESLD.  In addition, as PG mentioned, there is the Caregivers Sharing thread for support.

Hugs,

Connie

Posted Today 7:19 AM (GMT 0)
My husband is in the hospice unit.

blood pressure is low....
Posted Today 8:45 PM (GMT 0)
3118, they will make sure he doesn't suffer.  Hospice is a wonderful organization.

Hugs,

Connie

Posted 12/1/2010 7:34 AM (GMT 0)
Bill had 7 litres of fluid tapped form his abdoman @ 3p today. And Bill looked and felt great! Legs and abdoman were normal!
and now it is 10 hours later and I can see how swollen he is....
Bill has been sleeping and breathing has changed and BP is low...
Bill came home after teh tap today - hospital bed and hospice services as support
Posted 12/1/2010 12:59 PM (GMT 0)
my mom had the big extended belly and was tired, pale, and jaundiced and she went on that way for over a year. but with hospice involved you never know it could be within six months(thats normally when hospice gets involved.) ESLD is such an individual disease as it effects everyone differently. all i can say is make sure he knows you love him, spend as much time with him, and make sure everything is set for if he does pass(will, funeral, etc). that will make things so much easier and your husband will feel more at ease.
Posted 12/1/2010 7:49 PM (GMT 0)

3118, I'm glad that Bill got a little relief from the draining, but it's like I said--it tends to come back quickly and it's dangerous to tap too often. 

WG gave you some good input.

I'm very glad to hear that he is home with a hospital bed and hospice services.  Hospice also offers respite care, as they may have explained to you.  It's important that you get out now and then to have some time to yourself.  Hospice will be a great resource for you.  However, it's still a very draining situation.  My heart goes out to you.

 Hugs,

Connie


Posted 12/1/2010 8:18 PM (GMT 0)
Aside from my husbands illness, our 8 yr old son has autism -
Managing is becoming more difficult.
Bill has been sleeping since 9p last night....
Posted 12/1/2010 10:28 PM (GMT 0)

I'm sure that must be very difficult.  It might help to let his teacher know what is going on.

Hugs,

Connie

Posted 12/5/2010 8:36 AM (GMT 0)
Bill died on 12.4. just after 12n
Posted 12/5/2010 10:59 AM (GMT 0)
So sorry to hear of your loss my prayers and thoughts are with you... and your family.. Sandi
Posted 12/5/2010 1:46 PM (GMT 0)
 (((318ord))) I am so sorry for your loss.   Lot's of thoughts and prayers..........
Posted 12/5/2010 3:08 PM (GMT 0)
318ord...so sad. My thoughts are with you too. ML
Posted 12/5/2010 7:48 PM (GMT 0)

3118, so very sorry to hear this.  Remember, we are here for you, so feel free to post anytime you'd like to.  Hospice also has grief counseling.

Hugs,

Connie

Posted 12/5/2010 9:17 PM (GMT 0)
3118-I am so sorry for your loss. Thoughts and prayers to you and your family.
Emma
Posted 12/6/2010 2:09 AM (GMT 0)
Sooo Sorry for your loss !
Posted 12/6/2010 7:36 AM (GMT 0)
I am so very sorry :-(.
✚ New Topic ✚ Reply