My father has end stage of liver disease

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floridamom3
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/23/2010 9:56 PM (GMT -7)   
Hi, I am new to this forum and my sister actually found it. Our dad was rushed to the hospital 4/11 for problems with breathing and just being really sick. When he was admitted the Dr said he was in liver/renal/lung failure. He almost died. He had already been diagnosed with cirrhosis of the liver. Well he is now at the end stage of this disease. He continued to drink after the initial diagnosis I think because he was in denial. He is still in the hospital today. The thing is he's in the VA hospital and things there move real slow. They have been draining his lungs for about a week now. My sister and I went to visit him the day after he was admitted. We live in Florida, he lives in Georgia. We stayed 4 days with him. Besides being thin and looking older he seemed ok, just sick. It was hard to see. But since we've been back he has gotten worse. My mom tells us that his belly looks like he's pregnant, his legs, particularly his ankles are very swollen. Basically she said he's swollen all over. The doctors have done several ct scans and ultrasounds, blood work, urinalysis..you name it! The doctor will be doing an endoscopy next week. Also, this evening my mother said the doctor had him hold out his hands, palms facing up and did some minor tests and ordered an MRI of his brain. Since we are not doctors we had no idea what this was and after reading this forum and researching on the internet we think they are testing for encephalopathy. At least that's what I think. His symptoms as of now are: Jaundice, abdomen and leg swelling and sleepiness. His lungs were so full of fluid being produced by the liver that he was literally drowning and couldn't breathe. His breathing was 19%. Don't know the correct medical term for that but thats what it was when he got to the hospital. And like I said, they are still draining his lungs for nearly a week with no signs of stopping. We speak to him everyday and he sounds alot better. He's upbeat and can actually breathe now. But he asked my mom today why again he was in the hospital. So not sure what that's about. My sister and I plan on going back the first week of June when our kids are of school for the summer. If his health seriously declines, of course we'll leave right away. I just hope I get to him before the brain function starts to decrease. I've read some pretty sad things here in the forum and on the internet on what to expect when that happens. My mom is also in the process of getting him ssi and disability, he is only 56 yrs old. He has been a drinker our whole lives and I guess you just don't think about what it can really do to you. I mean I hated him drinking when I was growing up but it was always that way and you kinda get used to it. When I moved out and started my own life and family, I never gave it alot of thought. I mean dad was going to drink no matter what. It didn't affect me as much anymore because I was on my own. He had been pretty healthy up until early last year so I didn't expect anything to happen. Now that it has I can't help but be angry at him for doing this to himself. And I question why me and my family couldn't get him to stop. But it really doesn't matter now. It is what it is. I just want to be there for him and my mom. I hate he has to die like this. And no matter what the family will be there for him. Thanks for listening y'all. I'm glad I've joined this forum as it does offer support and great advice. I will keep you posted.

floridamom3
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/23/2010 10:07 PM (GMT -7)   
And another thing, like I said I didn't know anything about this disease so when the doctor told us some results of his bloodwork I would just ask "is that bad or good"? After researching on the internet and reading through this forum I have many questions now for our good friends, the VA doctors. Like ammonia, what level is it at now? What meds is he on, I only know of lasix. I don't know anything else he is taking. So I'm making a list of questions for my mom to ask those doctors. I wish I could speak to them myself I just doubt they will talk to me on the phone when mom is there. She says her brain hurts from all the info they've been giving her and she doesn't remember all of it or confuses it. So thank you forum members for enlightening me and my sister. We have learned so much!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/23/2010 10:46 PM (GMT -7)   

Hi, Floridamom, and welcome to the forum.  I am sorry your dad is so sick with a disease of his own making.  He's very young to be going through this.  If you haven't already done so, I suggest you read the info in the folder at the top of the forum entitled Hepatitis Resources.  There is a lot of good information in there.

It's true that the ascites (fluid in belly) can affect his breathing, as it pushes against his lungs.  I suppose it can even seep into the lungs or cause fluid retention in the lungs or, more likely, the sac around them.  The Lasix is a diuretic, but they may not be giving him a high dose if his kidneys have been showing signs of failure.  It does wonders for fluid retention, but is very hard on the kidneys.  Do you know if they have put him on Lactulose yet?  Not knowing why he is in the hospital could be an indication of encephalopathy.

I don't know if he will get good care at the V.A.  Does he have any other insurance coverage?  If they are able to bring him out of this crisis and he stops drinking entirely, he could have a chance to live longer.  If he continues to drink, he will be hastening his death.

I know you will get a lot of support here.  Feel free to ask anything you don't understand.  We are not doctors, but someone here may have the info you seek.

BTW, I'm in FL, too, and am followed at Mayo Jacksonville.

Hugs,

Connie


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


Nage
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 5/4/2010 8:59 PM (GMT -7)   
Hi,
My father was diagnosed with ESLD/cirhossis due to Hep C on March 8.  The only reason he actually got this diagnosis is because my family and I hosted an intervention because of his obvious decline in both mental and physical health.  He was severely bloated (ascites) and confused (encephalopathy) but because of his condition (of which we were unaware at the time) he refused to go to the hospital.  After hours of convincing he finally agreed.  When he was admitted into the hospital he was put on a plethera of medication to clean/drain him of all the toxins that had built up and to replenish all the vital minerals he had not produced because of the cirhossis.  He was in the hospital for 1 week and released because his condition was terminal.  My mother was told that he had a 35% chance to live out the next year and advised that he would need hospitalization 5 or 6 more times before he passed.  He passed away on April 18th.
My father was a drug user my whole life which prevented me from ever being close to him, but I knew that he loved me more than life because he told me every time he saw me.  I spent years and years being mad at him and even wishing that I had a different father.  I pitied my life and held him responsible, all the time thinking my mother was weak for ever staying with him (she was the rock, supported the family and never fell into drugs).  But when my dad was rushed to the hospital 2 weeks ago (he had not done drugs in over 2 years...he was 53) all of the things of the past became just that...the past.  I dont want to go into detail about his passing, but I stayed with him for 4 days...telling him that I love him, remembering all the wonderful memories that I had chosen to forget in order to stay so mad at him.  In those 4 days I came to realize why my mother stayed with him and just how much she felt for him.
ESLD is a horrifying condition with an even worse end.  When I read your post I could feel your anger and relate to it as if I wrote the words myself.  I dont have answers for you about your fathers condition because (as I have learned...searching and searching for my own) no one can give them to you.  I do feel like I should help you understand to love your father while he is still here...because one day you will wake up and realize that you will never hear his voice again.  If you ever need to talk, please reach out.
-Jeanette

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 5/5/2010 5:49 AM (GMT -7)   
hi i am so sorry you are going through this. my mom was also a alcoholic and drug user and i just lost her this past november, 3 days before thanksgiving, at the age of 50. he really should stop drinking and see a hepatologist. sounds to me like he is real bad. i had that with my mom to cept she wasnt having fluid in her lungs and she was bad and with my help she lived another year. if he dont stop drinking im afraid your dad is gonna get worse. this disease i wouldnt wish on my worst enemy. i know what you are going through and if you need someone i am here.
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.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/5/2010 5:41 PM (GMT -7)   
Hello floridamom and Jeanette and welcome to HealingWell.   I am so sorry for both of you having to go through all that you have with this illness.  It's seems to be a story repeated over and over again on this forum. 
 
Floidamom, you  and your sister are such good daughters.  I can relate to your mom though more.......she going to need a lot of support to get through this in one piece. 
Have her write down what the doctors tell her or your dad......I had to or I couldn't remember what was said by the time we got home.  Too much information and too much stress.  Or maybe she can tape record it .  She also has to take time out for herself.  Being a caregiver of a seriously ill patient is one hard job.   The stress alone is a killer.
 
Jeanette I am so sorry for your loss.   But I am glad that you got to spend some quality time with him before he passed. 
 
Thoughts and prayers for you both........  
 
 
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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