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jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/10/2009 9:11 AM (GMT -7)   
I have been lurking around this forum for about 6 weeks, and I can not tell you how much everyone has helped me through dealing with my fathers ESLD. Everyone's story is so different, and I thought I would share mine up until this point in hopes of helping others out there. The symptoms of this disease are terrible and to see someone go through the pain is unbearable at times. Here's how it started:

My dad was neither an alcoholic nor had hepatitis. He had developed the non-fatty liver which caused his cirrhosis. As much as the doctors would never admit this, about ten years ago he went through heavy treatment and medication to control a mental illness. As a family, we had no idea what all he underwent (long backstory), but I'm pretty sure it caused most of the the scarring of his liver what would eventually put him in the condition he is in today. My personal opinion though. about 4 years ago, he was diagnosed with the disease. He had moments over those years of encephalopathy and was in the hospital a couple of times with varices issues, but he would always bounce back to his normal self and be fine with the lactulose he was on.

Last July he was put on the liver transplant list, got a call on Valentines day for a liver, we waited around 14 hours for the surgeon as he was marked and ready to roll in to OR when we heard the news the liver was fatty. No go on the transplant. 2 weeks later he was in his local hospital when he started bleeding from every orifice of his body. Heavily. He was med flighted to the transplant hospital in our state, and after 14 pints of blood was transfused in him, they made the decision to do an emergency TIPS procedure in hopes to stop the bleeding. The surgery was successful and he remained in ICU for the next week, intubated, on 12 drips, slowly trying to recover. At one point during that week, they told us we needed to make the decision about taking him off life support as he was not getting any better. I think my dad heard this and thought "i'll show you", because he started to recover and eventually got off the air tube and blood pressure levelized and he was sent packing up to the step down ICU, which was a huge surprise. The difference a day makes, right?

During this week, he was able to eat food, breathe on little oxygen, and seemed to be doing much better. Towards the end of the week, he started sleeping more, not eating at all, and developed several infections (VRE), acites, endocarditis, etc. Back to square one. He then started having trouble breathing as fluid had built up in and around his lungs. Back on the tube and in ICU. During this time we learned that his kidneys had completely given up and were damaged during the time he was bleeding out a few weeks earlier. We were told the only thing that would help his kidneys were a new liver and dialysis (which would only be a temporary daily fix). After dialysis catheters were put in, my dad thought it would be smart to pull them out (the encephalopathy alone is his number 1 enemy as he knows not what he does), leaving a hole in his neck, causing more infection, and us heartache. This is now week 6, and he has gotten off of the breathing tube (yay!) and is now breathing on his own. He does have to continue with the pressor as his blood pressure is not maintaining. The transplant docs have told us that if he is infection free for 2 weeks he will be put back on the list. The antibiotics were completely yesterday and we should be getting back cultures to see what the infection status is tomorrow.

SO that is the backstory, and here are my questions:

1. Yesterday I walked in to see my dad talking to his late father...talking to "larry (his dad or my uncle, both passed away), talking to our Heavenly father saying "i don't want to go now, a little on down the road", talking about his balls hurt to a david, etc. I have never seen these kind of hallucinations before with him AT ALL. It scares me because there are so many accounts that in death your loved ones start to see things. Is this ICU psychosis or is this death right before our eyes? Have you ever experienced this before?

2. We have had the ICU head doctor straight up tell us that he would not be able to survive a surgery in his grave condition, yet the liver team will still evaluate him for a liver after he is 2 weeks infection free. Have you heard if someone who is gravely gravely ill survive a major surgery such as a transplant? I'm worried that if he gets the surgery and his kidneys don't regenerate because as they are too damaged that he will be on dialysis for the rest of his life. Would that even be worth it to have a new liver when you're in the hospital 3x a week for dialysis? The reason I say this, is because my family is not all in one place and would not be able to take him to the hospital that many times a week. Have you heard of someone have a new liver but still have to get dialysis for damaged kidneys? Is that a rare thing?

So many questions...a long post that I'm very sorry for...I just have 50 questions and am eager to hear your advice!!! Thanks so much everyone!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/10/2009 10:16 AM (GMT -7)   
Hello Jstar and welcome to HealingWell. I am real happy that you posted. I know for me and a lot of other members just to be able to communicate with people who totally understand all the feelings and fears that come with this disease was a God send.

You father must be one heck of a fighter.........with him being through so much.

When my husband was dying he did not " have conversations with anyone who had already passed on." In fact I don't have any experience of any of my loved ones doing it. But I have heard of it though. With him being so close to deaths door before and rallying through it............the only one who knows for sure is God.

And as far as him being too sick for a transplant..........Even if the ICU doctor says he's not healthy enough it is still up to the transplant center to make the call. Each center has it's own eligibility's for transplant.

Maybe someone can answer your question about the kidneys.........The only thing that I have heard of is doing a double transplant at the same time. ( Both kidney and Liver).

Hang in there and take care..........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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/10/2009 2:16 PM (GMT -7)   

Jstar, welcome to the forum.  I think you meant that your dad has non-alcoholic steato hepatitis or fatty liver.   He has certainly been through a lot up to this point.  It could be encephalopathy that is causing him to hallucinate.  If so, Lactulose should be given.  Is he also "out of it" and just not himself?

As to the kidneys, it depends on how much damage there is.  If there is a lot and they are failing, then he would probably need a double transplant or need regular dialysis.  There are free-standing dialysis clinics in large cities, so the patient does not have to go to the hospital.  There is also door-to-door transportation available in most cities if he qualifies physically.  This was established as the result of the Americans with Disabilities Act.  I use this service to go everywhere (even shopping), and there are usually dialysis patients aboard who are going to or from dialysis.

Is your dad still on the transplant list?  It would be up to them to decide whether he is able to have a transplant now and, if so, if he needs both a liver and kidney transplant.  Does your dad have a Living Will?


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


jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/10/2009 4:20 PM (GMT -7)   
Thank you for all of your responses. I appreciate the input. I hadn't even thought about double transplantation. We asked the renal doctors about it today and were told that my dad could definitely be considered for double transplantation. They are concerned that with just a liver transplant that the kidneys may not heal, as he went through a lot of trauma with all of the bleeding. They said that being a candidate for double transplantation actually speeds up the waiting process because a patient becomes priority and is moved to the top of the list. Also we were told that since he has a blood type B+, a more rare blood type for transplantation, that being double transplanted could open up his option to getting organs from an O donor. Weird. This option seems to be such a more brighter one for us. Both teams are still trying to decide if he would survive the surgery, but at least we have hope. The liver doctor told us today that his MELD score is over 40, so without transplantation he has 95-99% chance of living 1-3 more months.

He does have a living will, only to be considered if there is no hope anymore in his life. Right now our hope is getting confirmation that he is back on the transplant list. That's our last option, so we wait and continue on this rollercoaster ride we call ESLD until that happens.

The lactulose has never been stopped at any time in the last 3 years, that's why i was so baffled when I saw him hallucinate. I've seen him be confused, say "kind of" unusual things, but never screams out to people that aren't in the room with me. It was unusual, but we were told that it could be ICU psychosis, or indication of an infection, although his cultures have been coming back negative, so I don't know. They gave him Haldol which called him down a lot. No other hallucinations have been reported in the last 24 hours.

jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/10/2009 4:33 PM (GMT -7)   
I said "over 40" for his MELD score, but even though the doctor said over 40 today, i just read how the maximum score given in MELD is 40. Nonetheless, it's very serious...we are racing against the clock.

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/10/2009 8:26 PM (GMT -7)   

 

Hi Jstar,

 

Welcome to the forum.  I’m so impressed by your Father’s will to live.  He reminds me of my husband.  He finally received a liver transplant on January 21, 2009. 

 

I will tell you that when my husband was in the hospital (upwards of 75 days) before his transplant, he was gravely ill.  I almost lost him twice.  I asked him later if he remembered anything about the hospital stay and he said, “It’s weird, but I felt like I was watching people work on me.”

 

Is your Dad on Prednisone (steroid)?  This can cause hallucinations.  After my husband’s transplant surgery, he suffered hallucinations for more than a week while on Prednisone.  He no longer takes prednisone.  Since being released from the hospital, he has been taking Endocort instead.  He has not suffered any additional hallucinations.

 

Hospital psychosis is also a possibility.  See http://www.wisegeek.com/what-is-hospital-psychosis.htm  for more info on this phenomena.

 

I’m concerned about a liver/kidney double transplant.  It is common for the kidneys to fail during a liver transplant.  The kidneys usually regain function within a week.  I have to wonder what effect this would have on transplanted kidneys. 

 

You have your hands full and I’m sorry you and your family are suffering through this.  I wish you and your Dad all the best.  If anyone can get through this, it sure sounds like it might just be your Dad.

 

May God bless all of you.  You will be in my prayers.

 

Penny

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/10/2009 8:41 PM (GMT -7)   

Morphine can also cause hallucinations in some people, though I doubt that your dad was on that.

Penny, I also hallucinated something awful the one time I took Prednisone (for C-spine problems), and couldn't sleep for 3 days and 3 nights.  I finally went to the ER and they gave me an Rx for Thorazine to take for a week.  Like coming down from a bad drug trip.  Have never taken Prednisone since then and always note that I'm "allergic" to it.


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/11/2009 5:35 PM (GMT -7)   
Welcome to the forum Jstar. I am so sorry that your father is suffering so. A person's will has a lot to do with their outcome. It sounds like your father has a very strong one. I'll be praying that he receives a transplant soon.
Butterflythree
 
There is always hope!


jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/11/2009 10:04 PM (GMT -7)   
Hey everyone...

Quick update...my dad got back on the transplant list and got the call tonight about a donor. The donor has had Hep B in the past, so hopefully that doesn't interfere with recovery. Tomorrow morning is surgery if all the organ tests go okay tonight. Keep us in your thoughts!!

pcswife, thank you so much for that link. Hospital psychosis sounds exactly like what he had. He wasn't on morphine or prednisone, so the only logic would be just a psychosis bout. Actually, your husband's story sounds so much like my dad's own. That gives me hope that if he survives the double transplantation that there is hope afterwards.

Will update everyone soon!!!

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/12/2009 5:36 AM (GMT -7)   
Lot's of thoughts and prayers for a successful transplant..........
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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/12/2009 10:14 AM (GMT -7)   
Jstar that is great news. I'll continue praying.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/12/2009 11:37 AM (GMT -7)   
Wonderful news, Jstar!  I pray that it works out for your dad.

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


jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/12/2009 11:51 AM (GMT -7)   
just when you think something good happens...

we came in this morning ready for surgery and found out my dad was bleeding from his rectum. it looks like one of the varices had burst. the surgeons were also concerned that after harvesting the liver that it looked fatty. i guess after biopsy the surgeon made the decision it was viable enough and rolled him into surgery about an hour ago. i guess the surgeon figured it's either now or never seeing my dad's critical condition. there are so many risks going into the surgery so i am praying for the him to even make it through the surgery. the surgeon is one of the best in the nation, so i know he is in good hands. he's also one of the fastest, so hopefully he'll be out in 6 hours after both organs are transplanted. it's nerve wracking to wait!!! thanks for everyone's support!

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/12/2009 2:49 PM (GMT -7)   
jstar, I'm praying for you father to make it through the surgery and to be on the road to recovery soon. Hang in there. I can only imagine how tough it is right now.
Butterflythree
 
There is always hope!


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/12/2009 4:14 PM (GMT -7)   

 

Jstar,

 

I have a feeling your Father is going to make it through this.  He has a powerful will to live and this can make all the difference.  Understand that he has a very long way to go to recovery.  But I must say I am THRILLED for you!

 

I will continue to pray for you and you Father.  I hope he makes a miraculous recovery.

 

Penny


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/12/2009 4:38 PM (GMT -7)   
Jstar, I pray everything goes well. Your father sounds like a very strong willed person. Stay strong, and keep us updated on his progress. Toolost :)

pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/13/2009 6:01 PM (GMT -7)   

 

Jstar,

 

I pray that everything is going okay.  Drop us a line when you get a chance.

 

God bless,

 

Penny


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 4/13/2009 7:00 PM (GMT -7)   

Jstar,

Praying that all is going well for your father. You and your family hang in there.....many prayers coming your way!!!

 

Mer


jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/15/2009 9:41 AM (GMT -7)   
thank you guys for your thoughts. i don't know what to tell you guys because, honestly, i'm in a very bad place right now. i'm angry about a lot of things. it's hard to explain because a lot of it stems from my family's opinion. to break it down...

my dad had the liver transplant and kidney (i guess you call it this) transplant, but more like "addition" because he now has his 2 kidneys and the additional kidney from the donor. 3 kidneys. he survived it. a blood clot was removed, which is apparently what started the bleeding on sunday morning, and also a pus filled infection from his gut. liver numbers started going down immediately. kidneys were not working at all. concern 1.

going into the surgery, i had a lot of concerns. we only had an hour to decide about the transplant, since it was coming from a hep b donor, it was all on the family. my siblings have been for the transplant from the beginning. they said they would feel "guilty" if they didn't give my dad this last chance. my mother and myself have not been for it. why? because my dad's support system for after recovery is not the greatest. we all live in different cities, have jobs requiring lots of travel, and my dad lives alone. my mom and I feared he would end up with the liver disease again (especially with a hep b donor in her late 50s) after the transplant and would end up going through this all again, or in a nursing home. i didn't want to see my dad suffer twice. my siblings wanted to give him another day of life (he was 1-2 days from passing away as of sunday, according the docs), but didn't really care what hell he would go through during recovery, or even in the long run. and they wouldn't even be there most of the time to help him through it anyways. to me, a Believer, death isn't the worst thing that can happen to someone. Not to someone who is going through hell on earth. Death to me can be final peace. Its hard on the ones left behind with it all, sure, but it's peace for the passed one. And that is in my dad's living will and is his wish.

i've learned now that the anesthesiologists didn't even want to do the surgery to begin with. the liver surgeon told them "we're doing it. it's not your decision." the aftermath is, the kidneys haven't started working, his lung has collasped and they are concerned about pneumonia if they take the tube out, and his heart is enlarged. bilirubin has gone up too. my dad is skin and bones, no muscle hardly, just skin hanging off of bones. his body isn't exactly working how a normal transplant recipient body works. most patients are off the tube the next day, walking in 4-5 days, and out of the hospital in 6 days. i just hurt for my dad because i know he is angry at us for making him go through this. He was done and ready to go on Sunday, and even expressed that to us on the morning of the surgery as he said "I'm done, I don't want to do it, I resign, Let me go home." All ignored though. Now all I can do is just pray for relief. Even if he gets better, I pray he has a normal life, at least for a little while. Give him that much.

So that's the story so far. I write most of this in anger and pain that I've had to take on for my dad. I wish I would have stood up to my siblings, but I didn't. And now I have to watch my dad suffer for it.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2009 10:08 AM (GMT -7)   
(((((((Jstar)))))),

One question...........why didn't the doctors take your father's word? .........that he didn't want the transplant. That floors me that once that was said.............they still went through with it.

Your siblings will probably still have the quilt regardless. Even when you do everything possible and the end result doesn't come out right .......Guilt will be there.......believe me.

In my opinion..........if it was actually you father's time to go Sunday............God would have taken him.......Transplant or not. God has a plan.........we just don't know what it is.

Jstar............my thoughts and prayers will be with you and your family..............
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.


jstar
New Member


Date Joined Apr 2009
Total Posts : 7
   Posted 4/15/2009 10:30 AM (GMT -7)   
thank you. i have to be reminded that God has a plan in this. I have to believe that, otherwise, my hope is gone.

why didn't they listen to him? probably because they didn't think he was in his right mind. and who knows if he was. the surgeon said that it was our decision in the end, and the decision was 2 to 1. the surgeon was even saying that morning after harvesting the donor's organs, that the liver looked fatty at first sight, and after biopsy, i guess the pathologist determined it viable. and the surgeon determined since it was an emergency situation it was his last hope. i guess that is why they thought they'd give the surgery a go.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/15/2009 3:07 PM (GMT -7)   

Jstar, I'm so sorry about the problems your dad is suffering through.  If he has a Living Will, make sure it's in his chart and that there is a DNR order, if this is what your dad wishes.

Your mentioning the 3 kidneys reminded me...most people don't realize that with a kidney transplant, they do not remove the nonfunctioning kidney(s), but just hook up the donor kidney.  I'm not really sure why it's done this way, but do know that it's standard.

As to the liver with hep B, it would take a long time for it to fail...probably longer than your dad's natural life span at this point.  They aren't going to put in a liver that is badly damaged.

I pray that his kidney starts to work and that he will do well.  If not, all of you will know that you did everything possible to give him a chance to live a little longer.  In the end, it's in God's hands.


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


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 4/16/2009 12:24 AM (GMT -7)   
Hoping and praying for the best outcome for your Dad. MY BROTHER passed away about a week and a half ago of kidney related problems, was in hospital for a week with all kinds of bleeding complications He was bleeding everywhere and in a great deal of pain , so I guess he is in a much better place. Although I am having a very hard time dealing with the loss. I will pray for your dad.   june

Post Edited (june17) : 4/16/2009 1:35:24 AM (GMT-6)


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/16/2009 6:11 PM (GMT -7)   

Hi Jstar,

The decisions are agonizing, and there is no "right" way.  I had similar conflicts around my mother's care and my father's care-- It is just so hard to know what to do.  Maybe it will help to think that everyone wants the best, but no one knows what that is!!!  If there was one "correct" decision, it would be easy.  There is no wrong or right way!!!!  Every choice has consequences, and we just can't know what they are.  The guilt and blame can be torturous, and can split a family apart.   Please hang in there, and look for love.   I'm praying hard for you guys.... yeah yeah

 

Pix


prayers
New Member


Date Joined Feb 2009
Total Posts : 13
   Posted 4/16/2009 9:33 PM (GMT -7)   
Pix,

I really like your reply. I have just been going through something similar with my sister because my mom is dying (just not from hepa***). So I have been trying to handle that plus my husbands deterioration due to liver disease.

prayers
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