Looking for answers on Cirrhosis

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diva1977
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/21/2010 11:14 AM (GMT -7)   
My father inlaw was told 2 months ago he has Cirrhosis of the Liver & Cancer of the Liver. He was given about 6 months to live. His doctor wouldn't give us an exact time line which I fully understand because everyone is different. He has had 3 blood transfusions and this last time he was given 4 pints of blood. He was admitted into the hospital on Friday and today is Wed. He is being sent home! WHen I brought him in he had swelling in his legs & face, shortness in breath. His mental state was fine. As the days have gone by he has become more confused & is sleeping most of the day. They have gotten the fluid in his legs down. But now he is not acting normal. They have upped his lactulous(sp) from twice a day to 4 times a day. He seems a little better today but his mind is not 100%. I know he will pass from having Cirrhosis & Cancer. What I am wanting to know is now that he is getting into the confusion stage and the meds are not helping, he's also having heart failure. Time wise what am I looking at? How long can he stay alive & just sleep, sleep, sleep? I have read he can bleed from his ears & mouth? He's been having nose bleeds already. They are sending him home on Hospice as well. I am his medical power of attorney. The family looks to me to make sure I can give them information on his health. I guess what I am looking for is other peoples experience of a loved one who has been in the same state my father inlaw is in right now. What I need to look for & what I might have to expect from this point on? I just want to help him be as comfy as I can. I wanna know that hospice is doing all they can to help him with pain. I am one of these people who would rather know everything good & bad so that I know what I could be looking at while caring for him. Any advice, any situations from what you have delt with from Cirrhosis I would greatly appreciate. I did his MELD score yesterday and it was at 18. Does the MELD score in last stages of Cirrhosis & Liver Cancer really mean anything? Thanks for everyones time & God Bless!

**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 7/21/2010 1:04 PM (GMT -7)   
I could say many things about this situation, but I'll stick to one thing. You need to get him a prescription for xifaxin. It's an antibiotic that will help in conjunction with the lactulose, to control his encephalopathy. At one point, when my liver was failing, they had me drinking 30cc of lactulose, 8 times a day. Not fun, but I was less "stupid." Most of this is more about how he or you, would like him to pass.
"No good deed goes unpunished."


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/21/2010 1:32 PM (GMT -7)   

Hello, Diva, and welcome to the forum.  I'm very sorry about your FIL's condition.  There is really a lot of missing information.  For example, was he doing just fine until 2 mos. ago?  What caused the cirrhosis?  I have a feeling it may have been from alcohol, since you didn't mention the possibility of a transplant (he would have to have 6 mos. of documented sobriety in AA or alcohol counseling to even be evaluated for transplant.)  Did he receive any type of treatment for the cancer?  The MELD score is just an indication of how much his liver is failing.  It's primary purpose is for transplant.

I agree with David about adding Xifaxan to the Lactulose.  Hospice specializes in keeping patients pain free, so you needn't worry about that.  They are most excellent at what they do and I'm glad to hear that they will be involved.

There is really nothing more I can tell you.  Some patients hang on for months and even years, while others go quickly.  As we always remind caregivers and family, remember to take care of YOU.

Hugs,

Connie


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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 7/21/2010 4:28 PM (GMT -7)   
Diva, Once hospice is involved they will handle all meds, as to what needs to be given. Sadly the goal is to keep him comfortable which may not include adding drugs for his mental stability, this is something to discuss with them up front. What some people dont understand about hospice is the goal of comfort measures till passing and to do this they have to be in total control medically. They are a great much needed organization that I have dealt with several times and when something is needed they get it for you. Get all the help you can as it can be a long tough road.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 7/21/2010 5:50 PM (GMT -7)   
My thread.. on the other side of no treatment has some info... Mike was given six months January of 2010... with cirhossis and liver cancer... he died April 22,2010.... he actually died from low blood pressure... and pneumonia.. mulitple organ failure.... we were fortunate... in that he was independent until the end.... he refused hospice care... he died the way he wanted to... quickly... you have done the best you can.. I would encourage you to make sure all final arrangements are clear... and do what you can... but as they said get more details.. the cancer is the killer... my thoughts and prayers are with you.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 7/21/2010 5:51 PM (GMT -7)   
Also how large are the areas where he has cancer.. know the ammonia levels.. and the reason we didn't go with hospice because we wanted active treatment until the day he died...
There is no pit so deep that He is not deeper still... Corrie Ten Boom


diva1977
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/21/2010 8:51 PM (GMT -7)   
I'm gonna give a run down on the meds they sent him home on today from the hospital:

ALDACTONE/SPIRONOLACTONE 100MG ORAL DAILY
CEPHULAC/LACTULOSE 30ML ORAL 2 TIMES A DAY
FERROUS SULFATE 325 MG ORAL THREE TIMES A DAY
GLUCOTROL 2.5 MG ORAL BEFORE BREAKFAST & SUPPER
INDERAL/PROPRANOLOL HCL 20MG ORAL DAILY
K-DUR 10MEQ ORAL DAILY
LASIX/FUROSEMIDE

My father inlaw drank for 30 years. He has been sober for over 17 years now. He had a biopsy done in Jan and we were told in April he had Cancer, Cirrhosis and that only about 20% of his liver was working. He is a diabetic, had quad heart surgery 2 years ago & has high blood pressure. My FIL was taken into the ER by me in April because he was confused. He had been living with his daughter who had not been getting answers from other doctors. Before April he had 2 blood transfusions and was not told why. My sister inlaw was not asking questions so thats when I took over in APril because I am a demanding person. I took him in to the ER and told them we were not leaving until I got an answer to why he was so confused. Thats when we found out about his liver. Since then he has had one spell of Amonia levels getting high and was seen in the ER and sent home. Until Friday he had beed doing great! Well come to find out my sister inlaw was not telling me about lil signs that would have alerted me to take him in to see his Dr. He's been having nose bleeds, feet swelling for over a month. I found this out as I stayed with him at the hospital. It's hard to swollow that maybe if I had been told I could have taken him in sooner and he wouldn't have spent 6 days in the hospital. They said he had internal bleeding, thats why he lost so much blood. His linning in his tummy is very fragil to. Oh they also told us he's probably had Cirrhosis for 17 years now and might have died 15 years ago had he not stopped drinking. Oh and my father inlaw is also now living with me! I will now be able to keep an eye on him daily!

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 7/21/2010 9:13 PM (GMT -7)   
Diva, It sounds like you are on the right track finding out everything you can as this will make it easier for everyone to know up front what is going on! Please take time for yourself as this is a big physical and emotional rollercoaster you have gotten on. Hospice will make sure he has everything he needs, just remember they also have a support system for you too. Take care of you!
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


diva1977
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/21/2010 11:20 PM (GMT -7)   
Sue, Thanks for the information about the Hospice having a support system. I am going to look into that because along with caring for my father inlaw my husband & I also have 5 daughters ranging in ages from 16-6 so we will need anything we can get to help them deal with the changes they are about to witness.

diva1977
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/22/2010 7:51 AM (GMT -7)   
I think this thread is awesome! I have read up on some of the other threads for several months before I started my own thread! My FIL seems a lil confused again today :( but I am going to continue to stay positive!

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 7/22/2010 8:56 AM (GMT -7)   
that is great that he stayed sober for 17 years. it is really hard to watch a loved one die from cirrhosis or liver disease in general. i would not wish this disease on bin laden himself(sorry). he should be on a low salt diet, no red meats, find out what his wishes are and if he has a will. there is no telling how long he will last. my mom told me a year before she died about the hep c and cirrhosis. she was once so bad that she was jaundiced, had ascites(water in the belly), and her blood levels were really low. i came to this site and started going to her doctors and got her on the right meds and she lived another year. i am sure if i wouldnt have done that she would have died then. i was at the doctors twice a week with her, missed work because of it and did it all on my own without my sisters help(she was in denial). it takes a toll on your energy and emotions and i cried plenty because of it but i dont regret it one bit. he will be tired alot this disease does it to you. i say treasure the time you have with him and not worry about the time he has left.
The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 7/22/2010 10:58 AM (GMT -7)   
Diva, thanks very much for the additional info! I am SO glad to hear that your FIL stopped drinking 17 yrs. ago. It's true: If he had continued drinking, he would not have lasted very long. He probably was not a candidate for transplant due to his other issues. From what you've said, it appears that he received no treatment for the liver cancer. As for the lactulose, that can be adjusted up if needed. Also, Hospice gives respite to caregivers, so that you can get away for a few hours to do things for yourself or with your daughters.

Please do keep us updated.

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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 7/22/2010 9:50 PM (GMT -7)   
Hello Diva and welcome to HealingWell. First of all I want to tell you what a wonderful DIL you are. Not everyone would do what you are doing.

Hospice is a wonderful organization. And they are strictly for comfort care for a terminally ill person. They may not give him Xifaxin. My husband had just got his prescription before I called them in. Not sure if they would have renewed it had it run out before he died. They don't give any meds to prolong life.........only meds and procedures to keep them comfortable. But do talk to his nurse about it. I was able to talk them into shots for his blood. I've forgotten it's name now. They did tell me that he'd only get them for a few weeks though. I think they did it for me more than anything.
They can also assign a volunteer as Connie has stated for your respite. Mine was a life saver. They also assign a person to counsel the family about what is going on and give them someone to talk to about their own feelings with the situation. Also they can assign someone to help with his personal needs. They also supplied oxygen and a hospital bed for my husband. If it wasn't for my husband's nurse and his volunteer........I don't think that I would have gotten through my husband death in one piece. They were wonderful.

Take advantage of all that they have to offer. You will need all the help you can get.

Take care.........lot's of thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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