end stage liver disease

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still believe
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 9/25/2006 11:46 AM (GMT -7)   
the past 10 months have been a nightmare! started out with my husband being told that his kidneys were failing, followed by edema of his hands, feet and legs.  in and out of the hospital on several occasions because unbeknownst to us he also has several degenerative discs in his neck area that was causing severe pain and had developed a staph infection in his blood that required antibiotics for a month intravenously. too make a long story short; because my husband has been so ill and they have trouble finding a good vein to get bloodwork, was finally decided about 2 months ago to start dialysis.  a catheter was put into his chest because they didn't want to risk putting a fistula in.  about 2 weeks ago i was informed that his liver was going and we were told that he had hepC and by the look of things also cirrhosis (not confirmed by biopsy because of his condition but highly suspected).  the doctors also told me that his albumin levels had been slowly decreasing since January (below 1 they said whereas most people are from 3-5).  they do not think he will live a year.  right now he is in a nursing home.  he has suffered extreme encephalopathy as well and one day was in a coma-like state but that turned around as soon as they were able to give him the lactulose.  at this point i don't know what to do.  i was told that a transplant would be out because he would need both liver and kidney and he wasn't well enough for that.  i guess we are just waiting for him to die.  has anyone else had similar story.  my husband is 56 years old and used to be into drugs and a heavy drinker but stopped everything about a year ago.  we have a 16 year old daughter and it is hard to deal with this but we believe that God is the only one that knows how long we actually have on this earth. 

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/25/2006 11:53 AM (GMT -7)   
wow,i am so sorry about your husband,,my heart goes out to you and your daughter too. my husband has hep b,had a heart attack which severely damaged his heart,,,functioning at less then 30 percent,,and triple bypass surgery,,congestive heart failure,,his liver is not in the final stages according to his last biopsy,,,about stage 2,,,please keep coming back here for support if you want,this is a great place and wonderful ppl. :hugs: keep strong for your daughter and husband and take care of yourself
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Leece
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 10/1/2006 10:31 AM (GMT -7)   
Hi - Firstly have a hug! Secondly somewhere on this forum is my original post - I think I called it encephalopathy nightmare or something like that. I'm nooooo doctor and I don't have a magic wand so all I can do is urge you to make the most of the time you have left if thedoctors cannot do a transplant. From an encephalopathy point of view since my husband died I must have read upteen internet pages on this subject. As I understand it as the liver gets worse and worse the liklihood is that the encephalopathy will too. Lactolose will hold it - or flush it - but  I learnt it only really works at its best if the patient is drinking plenty. There is no doubt looking back that when Ronnie was being given lactolose several times a day and he was drinking he did come back from the sheer insanity and hallucinations that he had. BUT...the doctors cut the dose down, he got worse, lost the ability to swallow and...it was a mess. But I can definitely say that lactolose kept him sane for a while. I'm just so, so sorry that you are both  going through this. I wish I could think of one helpful thing to say - I'll say this, when the doctors finally called 'time' and gave up, we brought Ronnie home for his final five days. I WOULD recommend bringing your husband home at some point if you can - when the time is right and all the invasive treatment is no longer appropriate - when its simply love him, feed him, clean him and comfort him, bring him home and let your hospice team deal with the pain relief. Having Ronnie home for a few days was wonderful - even if he was in a coma for the last two. And...this sounds terrible but I'm going to say it because I think everyone on this forum will understand I'm NOT being flippant or disrespectful in any way...if you are caring for someone in liver failure, to ease the experience of visitors coming to visit, be careful what colour bedding you use. Ronnie only finally went that awful yellow / green colour on his last two days, but I had him on blue bedding - cream bedding would have made him look much better. It's just a little thing, but I'll remember how he looked against the blue until the day I die. It's similar to a tip  I read on a hospice site - if you have a patient that is prone to large bleeds - some luekemia patients have this issue - always use dark towels to 'mop up' - its kinder on the mind as the blood isn't so obvious as it would have been on white towels. Anyway, I'm so sorry for your situation, I hope you and your husband are able to have some good days, and congratulations to him on his sobriety - whatever happens to him now he'll have the dignity of knowing he did all he could personally do to help his own situation. I'll be thinking of you in the weeks and months to come. Lisa. 

still believe
New Member


Date Joined Sep 2006
Total Posts : 2
   Posted 10/2/2006 9:50 AM (GMT -7)   
thanks so much for replying. it means a lot. over the past weekend my husband's catheter became infected and they are supposed to be inserting another one today. it is so hard to see him in this condition but i don't feel that i can stop the dialysis yet which is what would need to be done if he does hospice. the past week he hasn't been eating and it appears that he has some pain when he tries to swallow but he is unable to express it. thank you for the advice about bringing him home. he has constantly been asking to come home but he hasn't really been himself mentally for a while now and doesn't really know where he is...but I guess he knows that he isn't home. keep us in your prayers.

Leece
New Member


Date Joined Sep 2006
Total Posts : 4
   Posted 10/2/2006 4:10 PM (GMT -7)   
I'll certainly do that for you. You can only do what you think is right for your husband and for yourself. I hope his catheter replacement goes well - Ronnie ripped - and I mean ripped his out when he was going through a period of complete madness and thought any nurse in blue was trying to kill him! It sounds like your husband is a very, very poorly man, I'm so sorry. But if you're not ready to say 'quit' to the dialasis then dont - like I said, go with your gut feeling about what is right at the time. I tried very hard to think through all the decisions the doctors were throwing at me very carefully and although there isn't a minute goes by without my Ronnie being in my mind I can look myself in the mirror and say 'no regrets'. I don't regret any of the decisions I took, I refused to be pressurised by the medics into agreeing to things I didn't think Ronnie would agree to if he was in his right mind. And when they decided it was time to quit I agreed because I wanted to -  they were right, it was time to quit. If you can reach that sort of peace of mind in amongst all the chaos it will help you eventually when your husband isn't hurting anymore and you have to face life without him. I'll keep you both in my prayers for sure. You know I look at photos of Ronnie taken six months ago with a puppy on his lap and a laugh on his face...how does life change so fast, we're both going through one heck of a learning curve thats for sure. I've learnt we're none of us promised a 'tomorrow' and this whole thing has made me appreciate 'today' more and the things in life that really matter. Hope you're able to have a good day today. Leece

Shel
Regular Member


Date Joined Apr 2006
Total Posts : 122
   Posted 10/5/2006 3:26 PM (GMT -7)   
Hi Leece and Still Believe,
As I'm reading through your comments, I'm deeply saddened to hear what you both have been through and Still Believe, what you continue to go through. My husband Robert has end stage liver disease/cirrhosis. He too has been through the ringer the last 10 months but lucky for him is doing real good. He will be going to Mayo Clinic in AZ for a liver transplant evaluation and to know exactly where he stands in all of this. Seeing your loved one so ill is horrible. Robert got sick in December of 2005. It was the worst two weeks I could ever imagine. I experienced that for two weeks and your having to experience that until the worst happens. I will keep you in thoughts and prayers and hope he is comfortable. With my Husband Robert doing so well, we take advantage of that in every way because I know things can change in an instant. We live life the best we can and enjoy our time as family everyday. That way if something happens, I have no regrets! When he is sick on some days, I will sit with him and just enjoy the time because I know it's borrowed time! I feel the same way, tomorrow is not promised, today is appreciated! Take care and I will pray for you.
*Hugs, Thoughts, and Prayers*
   *Shel in New Mexico, USA*
 

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