I Can't Take Anymore

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pamom2
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 4/21/2007 9:26 PM (GMT -7)   
How long can this go on? My husband has end stage cirrhosis and I'm at the end of my rope. He was diagnosed 2 years ago, is on the transplant list but he is not living just existing.It's not that I want him to die but it sure seems better than how he is living now. He is confused all the time, constantly has uncontrolled bowel movements and now he is falling. I'm afraid he's going to do something at night while I'm asleep and I won't know it. I'm exhausted even tho I have help from my 20 year old son and it's not a lot because he is recovering from foot surgery. I just don't know what to do anymore.I'm sure there's a lot of you out there going thru the same thing. I just can't do it anymore. Please help! sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad sad

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/21/2007 10:34 PM (GMT -7)   
Pamom2 I am so sorry that you are going through this. I too have an end stage husband to care for. If he's confused either his amonia levels are high or he has a low grade infection. How much lactalose is he taking a day? And are they giving him anything else with the lactalose for the encephalothopy? My husband also takes Xiafan Also how's his blood pressure? If he is taking a lot of diaretics it could cause his blood pressure to be too low and he can get dizzy and fall. His medications may need to be readjusted again. Call the transplant team and let them know what's going on with him. Also a social worker should have been a part of the evalution team. Call him and see if he has any ideas on how you might get a home nurse to come in and help you. My thoughts and prayers will be with you and your husband. Pink Grandma

pamom2
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 4/22/2007 10:24 AM (GMT -7)   
Thanks for your reply. He is on all the meds you described and since you mentioned it, I'll check his blood pressure. His lactulose  dosage is 60ml three times a day. The docs just adjusted it about a week ago. They told me that soon no matter how much lactulose he gets, it won't help. I know that very soon I won't be able to give him the care he needs and deserves and will have no choice but to put him in a nursing home and that is weighing heavily on my mind. sad sad sad sad

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/22/2007 11:16 AM (GMT -7)   
Dear Pamom2, That amount of lactolose is very high. And it's causing the uncontrolled bowel movements. Do they have him on Xixafan? That helps with the encephalophy so that he may not have to take so much lactolose. My husband is in an encephalophy epizode this morning. He's sleeping and I can't get him to take his meds. I am going to call the oncall hospice nurse and see if see can come out today and help me help him. He may have to go to the hospice house if I can't bring him back out of it. So I really do know what you are going through. I'm sending good thoughts and prayers your way in hopes of your husband getting through this in time for a transplant. I know the pain and frustrations of coming so close to a transplant and then not making it. Please hang in there. God has plans for both you and your husband and hopefully they will include a full recovery.
Thoughts and prayers.............Pink Grandma

pamom2
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 4/22/2007 4:09 PM (GMT -7)   
Thanks again for taking the time to talk. He is also on the Xixafan
along with the lactulose. If he doesn't take the amount of lactulose that he does, he gets in really bad shape. I think I'm going to contact my local hospice and see if they can help me. He is seeing one of the best hepatologist in the area so I'm not that concerned about the meds. the doc is prescribing. How long ago was your husband diagnosed? Did he have TIPS done?

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/22/2007 7:24 PM (GMT -7)   
Thanks for talking with me also. My husband has never had the tips done. The lactolose and Xixafan always seemed to work. He was diagnosed with cirrohsis about 8 years ago and then liver cancer about 17 months ago. He still is not responding enough to take any meds,drinks or food. I called the hospice oncall nurse and she believes that it is the start of a coma. She said that there's not much I can do for him now. It doesn't look good at all right now. I am going to call his regular hospice nurse in the morning. I don't know how much longer I can watch him die before my eyes. He's not breathing very well it looks like breathing is getting shallower at the hours go on. I just don't want him to suffer a long time. He has suffered enough that last 2 years. I feel so helpless. sad Pink Grandma

pamom2
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 4/22/2007 9:10 PM (GMT -7)   
I'm so sorry! You know exactly what I'm going thru and I know what you are going thru too. Was his liver completly gone when he was diagnosed? Does the cancer usually happen with cirrohsis ? Was he ever considered for a transplant? Sorry for all the questions. I don't think I could ever go thru this for as long as you have. My husband's dr. said he's surprised my husband has lasted this long. He's still able to drink and eat but he is in his own little world. This disease really tears you apart.

hangingon
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/1/2007 9:24 AM (GMT -7)   
hi i just joined this forum.i am looking for encouragement andwant to help others who need encouraging.
My son received a new liver on 25th march and he had been so close to dying and his new liver is doing well so his doc says but he has fluid on the legs and it is the main thing holding him back .he had diabetes as a result of the cirroshis and it has gone .he no longer has to take insulin.
we are just hanging on to him getting over the op . since he was diagnosed and got really bad we have had to care for him and we just havent even been able to dream of having a life ourselves it is really hard .so glad to find others who understand

pamom2
New Member


Date Joined Nov 2006
Total Posts : 7
   Posted 5/1/2007 1:55 PM (GMT -7)   
Hi....I'm sure you'll get encouragment from others on this board. It's hard for me to give it, I guess because I need it myself. I don't mean to sound like I want pity,but I just get so tired of everything. How old is your son? I'm really glad he got a liver. How long did he wait for one? What was his MELD score? I just started to talk to a professional therapist last week so I'm hoping to get better with my emotions and feelings.She told me I'm full of guilt, resentment,depression and anger. That's kind of a no brainer, but I'm ready to listen and get help for all of this before I go nuts! sad sad

hangingon
New Member


Date Joined May 2007
Total Posts : 2
   Posted 5/1/2007 6:08 PM (GMT -7)   
Hi pamom2
This is the first time i have ever been on a forum .
My son is 36 and he was told he was too sick to have a transplant that he probably would not survive it but he started having confusion etc and one came up so they gave it to him because he has children 17,13,12,7.after he was activated it only took 3 weeks to get one .
He is still getting over lots of problems like lymphodema in legs and its 2 steps forward and one back but there is light at the end of the tunnel its just so slow . he no longer has to have insulin.and he has no appetite .good to hear from you . have to take my son to see his legal people about children sadly his wife couldnt take it anymore and left him through all this. cant wait to get back home and talk some more.
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