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Education: Stages of Liver Disease

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Posted 9/13/2008 2:23 AM (GMT 0)

Hi all,

It's good to read everyone's experiences. my dad has been up and down for so many years with Hep C Cirrhosis and now Liver cancer. today they took 5 liters of ascites out of his stomach, a total of 10 this month.  He sleeps all the time and is growing more and more confused and uncoordinated.  Because he's had so many crises, biopsies, chemoembolisations, moving up on the transplant list then being taken off, put back on, now off again, I feel sometimes he's like "the boy who cried liver cancer."  he's so stoic and positive all the time so it's hard to know, is this going to be it, or just another valley?  How will I know when it's getting close to the end?  for real?

I love my dad, but as his primary caregiver, it's emotionally hard. I know I share many of these things with all of you.  If you have watched someone go, please tell me what i should prepare for, physically.

thank you,

Jan

Posted 9/13/2008 2:38 AM (GMT 0)
Sorry, Jan... I have no idea what to prepare for physically as a primary care giver. I don't think anyone can be prepared for losing a parent... especially one whom they've cared for. I'm actually on an SSRI for anxiety and I think that it may help here as well. I'm not suggesting you do that, but you may want to talk to your doctor. Do you have any psychiatric help for yourself?

My father is cancer-free so far, has a MELD of 19 as of a few weeks ago and gets fluid taken every 7-10 days. Why does your father continually get taken off the list?
Posted 9/13/2008 3:37 AM (GMT 0)

Hi, Jan, and welcome to the forum.  I have hep C and have also had liver cancer.  I was treated at Mayo Jacksonville with chemoembolization, TheraSphere, and finally removal of the rt. lobe of my liver, where the tumor was taking up most of the lobe, in May '07.

Has your father's liver cancer metastasized?  Mine had--to the inferior vena cava--but the TheraSphere (microscopic radioactive beads injected into the tumor) shrunk it back into the tumor.  Therefore, they were able to operate.

I have never had encephalopathy, so your dad's disease must be more advanced.  Although I had ascites and edema of the lower extremities, I was never drained.  I was put on Lasix and Aldactone, and still take them, but at a lower dose.  I also monitor my salt intake.

I'm sure you will find a lot of information and support on this forum.

Hugs,

Connie

Posted 9/13/2008 7:03 AM (GMT 0)

Hi,

In terms of medical help, i'm seeing a psych and a therapist who cover me on the medhelp end. I know that the grief will be hard, right now I just want to help my father with a good passage, and want to know what that passage might look like. Coma? Increasing pain? Is there some acute thing that will happen I should be ready for?  That kind of thing.

I've had two bouts of leukemia, and it's so much easier having your own illness. Watching my father wither away seems so much harder.

thanks.

Jan

Posted 9/13/2008 7:05 AM (GMT 0)
I don't know if it has metastized or not, but he's been doing the Lasix and Aldactone and Lactulose for several years now.

Posted 9/13/2008 7:35 AM (GMT 0)
Hello Jan and welcome to HealingWell. I am so sorry about your father.

What a wonderful daughter you are.

I tried to find an old post on this subject but failed. So I will explain to you what I know about what may happen.

When my husband died ....... He woke up one morning so confused. He hadn't had a bout of encephalopathy a quite a few months. So it really was quite a surprise. I tried giving him his lactulose but he wouldn't take it. He kept trying to urinate but could not. When I finally got him back into bed he went to sleep. When I tried to wake him a couple of hours later I couldn't.

Hospice was already involved so I called the on call nurse. She confirmed that he was probably in a coma. He was. I think he lasted 2 days. At 12pm on Monday he started breathing what they call the death rattle. From that point on I kept telling him to hold on that his daughter was coming. He lasted 12 hours until his daughter got here from LA at 12 midnight. As soon as she called him Daddy he expired. He was proof to me that people in coma's can and do hear you. They just can not respond.

So keep telling your dad how much you love him. I believe that people who are dying need to have other people with them. Tough him,hug him.

My thoughts and prayers will be with you and your father.........

Each person's passing can be different.
Posted 11/9/2008 5:48 AM (GMT 0)
I have been lurking on this board for awhile learning so much that the Dr. didn't tell me about. My husband has endstage liver disease.Because of reading on this board I have been a little more prepared and have not been taken by surprise by some of the symptons he is having.Today when I went to see him at the nursing home he was unresponsive. I was really surprised because yesterday he seemed to be doing so well.The hospice people said that it was normal for the disease. They decided to not to get him up anymore because he is in a lot of pain.(He also has MRSA in his knee and causes a lot of pain.) Because he wouldn't eat or even take pain med-or any meds for that matter that they would not give him anything by mouth. His sister came in from out of town to see him and she got him roused and even to eat some soup and drink some water. Then he seemed like he knew us and talked a bit. I know he will not last much longer and it is very difficult facing this.But reading this forum has prepared me a little bit.Thank you sharing your stories.
Posted 11/9/2008 7:02 PM (GMT 0)

Del's wife, I'm so sorry that you are having to watch your husband go through this, but so glad that you posted, and also that Hospice is involved.  They are such a great help for both patients and family.

If reading this forum has helped you, that is very gratifying to all of us.

My prayers are with you.

Posted 11/10/2008 2:02 AM (GMT 0)
Welcome to the forum Del's wife. I am so sorry that your husband is not doing well. I know that it must be very hard watching your husband go through all that he is going through. I have heard that Hospice is really great. This place has been a great place of knowledge for me also. The doctor's don't really tell you much at all when it comes to cirrhosis. After researching and coming here I have felt a little more prepared. I will be praying for you and your husband.
Posted 11/10/2008 4:01 AM (GMT 0)
Del's wife

My sincere thoughts and prayers are with your husband and may God give you comfort in this trying time. I am glad you have hospice. They are such a blessing.
You will be constantly in my prayers
Karen
Posted 11/10/2008 3:11 PM (GMT 0)
Hello Del's wife and welcome to HealingWell. I am so glad that you decided to post. I know that the first post is the hardest. At least it was for me. Sorry that you have to go through this with your husband. I too had to call in hospice for my husband and found them to be such a great help. Hang in there.........try to take care of you too during this time. I know it's hard but it really is very essential for your own health as well.

Thoughts and prayers.........
Posted 11/10/2008 8:48 PM (GMT 0)
When signing all the papers for hospice, I believe the hardest thing that I have ever done in my life was to sign the DNR. Although in the years past we had discussed all the what ifs, I never believed that we would come to that. When he first got sick he signed a medical power of attorney for me to make decisions if he couldn't. But even so, I still talk with our kids and his 2 sisters and ask their opinion before I do anything.
He had a bad weekend. He won't eat or take his medicne by mouth. They started giving him morphine because he was in a lot of pain.But yesterday he started coming around and eating and drinking. He isn't talk well...kind of like a child, he repeats what is said to him.
Thank you all for your thoughts and prayers and good wishes. They mean alot, because I know that you know what we am going through.

Grace
Posted 11/11/2008 1:55 AM (GMT 0)
Dels Wife, My heart is aching for you and your family. My thoughts and prayers are still with you.
Posted 11/17/2008 4:39 AM (GMT 0)
Hello everyone... I just wanted to check in and share some of my recent experience for those who are interested.

My father has been in the hospital since his umbilical hernia ruptured 4 weeks ago. They have re-evaluated him for transplant and turned him down because they believe he is high risk for drinking post-transplant even though he has completed 2 months of rehab and has been sober longer than that. They are requiring 4 more months of rehab for reconsideration. They have performed the TIPS procedure, but he is still having complications from the hernia. Prior to the TIPS, he was having an average of 9 liters of fluid removed every 7 days. They had to do the TIPS to stop the fluid in order to operate on the hernia. His AST/ALT ratio is too high and ranges from 2.6 to 4.0 and they are requiring a ration of 2.0 or less to repair the hole from the hernia. He can't leave the hospital until the surgery is performed.

The newest complication is that he is now throwing up bile and the fluid that is collected from the drain connected to his abdomen is green... probably bile as well. Also, his anticoagulation factor is extremely elevated. I'm still trying to get details on that one.

Does anyone have experience with bile at this stage?

It's just frustrating because each case is so different and no one can predict how long he has or what will happen next.

So sorry about your husband, Grace. The medications are really important and I hope that you can get him to keep taking them. My father was not very good at taking them and he got worse when left to himself without others to make sure he took them. At least in the hospital, he gets all of them and hasn't had any episodes like you describe. No coma yet either. That must be pretty scary.
Posted 11/17/2008 5:44 AM (GMT 0)

Bootling, I'm sorry your dad is having so many medical problems.  I do know that all transplant centers I've heard of require 6 mos. of sobriety before even considering someone for transplant, and usually that means attending AA for 6 mos.  Of course, your dad is too sick right now to do that.  I hope that they can find solutions for his problems.

Hang in there.

Posted 11/17/2008 5:05 PM (GMT 0)
Bootling

Praying for your father. I have an umbilical hernia as well as a groin hernia and another one (can't remember name) that are bothering me so much all caused by fluid. The Drs have mentioned the TIPS procedure for me when I went for my TP eval in August but have not heard anything since.

I pray that the drs and nurse take good care of your dad. Praying to the father above can't hurt either.
You take it easy also and rest when you can

Karen
Posted 11/17/2008 11:12 PM (GMT 0)
Bottling, I am so sorry that your dad is so sick. I will keep praying for you both.
Posted 12/1/2008 3:28 PM (GMT 0)

Just wanted to update, My husband passed away Friday from endstage liver disease. It was quick and he is finally pain free. My boys got to say their goodbyes and I was with him so he wasn't alone.He will be missed.Thanks so much for your thoughts and prayers.

Grace

Posted 12/1/2008 5:42 PM (GMT 0)
Grace, I am very sorry to hear about your husbands passing. My thoughts are with you and your family.
Posted 12/1/2008 11:30 PM (GMT 0)
Grace, I am so sorry to hear about your husband. But at least now the suffering in over and he is in a better place. My thoughts and prayers will be with you.
Posted 3/24/2009 9:45 PM (GMT 0)
I have to say have learnt alot
from the thread and
I so appreciate it
I know I can now talk to my dughter more about her Bio dad

Thanks all
for sharing your insight and your life

LYN
Posted 5/4/2009 6:29 AM (GMT 0)
Bump
Posted 5/13/2009 6:48 AM (GMT 0)
Bump.
Posted 6/13/2009 2:43 PM (GMT 0)
bump for laura
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