End Stage Liver Disease - 18 litres removed....

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Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 2/26/2009 4:44 PM (GMT -7)   

G'day again. I had posted previously under another post. I thought it only fair to leave that post to that person so they can have their time and place for answers and support which I have found to be fantastic. smilewinkgrin

 My original post is below.

 

Hello all,

 

This is the only site that I can find that has people in the same position as me. My father, 67yrs old, has been diagnosed with ESLD. He is taking diuretics, lactulose, daily antibiotics as well as a number of other medications.

 

He has had a number of drains the biggest so far was 15 litres and three cases of total disorientation and hospitalisation. In the last few months it appears that he has lost a lot of weight even thought he is following a high protein diet.

 

This is killing my mother and now my children are seeing a decline in ‘pops’ motivation to interact.

 

Unfortunately, my father is not a suitable candidate for a transplant so I guess it is just a matter of time. I know that there are no miracle cures and that each case is different. I would like to know how long he really has. The doctors have indicated 1 – 3 years maybe more, may be less.

 

 

Thanks to all that have provides replies to date. Recently my father was admitted to hospital for yet another drain. 18 litres was removed. He now has been told by the specialist to ease up on the diuretics as his kidneys are being affected. He is due again for a drain as he is building up about 1 – 1.5 litres a week.

 

We are hanging in there and I can now pick him slurring his words on more frequent occasions.


Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/26/2009 9:23 PM (GMT -7)   

Thank you for the update, Tazdevil.  Be sure to read the thread on death and dying.

Hang in there.


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 2/26/2009 11:14 PM (GMT -7)   
Hi Taz, If they lower his diuretics you mom should ask his doctors if they should lower his fluid and sodium intake some during that time as well. It is one tough balancing act. Do this and it affects that. Do that and it affects this. Everything keeps getting readjusted as things get affected.

Getting educated on this disease is the best thing that you can do. So go ahead and read over some of our educational posts..

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.


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/27/2009 3:53 AM (GMT -7)   

 

Hi Taz and welcome to the forum.  You are in the same position my daughter was in recently.  My husband is 62 and just received his transplant in January. 

 

ESLD takes a toll on the entire family.  My Grandson Austin is 7 and lives about 1 mile from us.  He and my husband, Harvey, have been best buddies since the day Austin was born.  Before my husband developed cirrhosis, they were always going to the park, swimming, riding bikes together, etc.  We kept Austin every weekend.  It was very difficult for him to understand what was happening to his Pawpaw.  He knew he was sick, everybody gets sick, but why wasn’t he getting better?  It was heartbreaking.

 

If you don’t mind my asking, what condition brought you father to ESLD?  How long has he had cirrhosis?  Why did they determine he is not a candidate for transplant?  What is his MELD score?  I don’t mean to sound so forward, but if you’ve read my other posts, you know I have a habit of second guessing the doctors. 

 

Your Father’s prognosis has a great deal to do with the doctor’s ability to control his complications.  Muscle wasting is an indicator that his liver is in very poor condition.  My husband lost about 60 lbs of muscle mass, but the fluid retention masked this—he looked bigger than he actually was.

 

I’m working again and try to check in with the forum at some point each day.  I look forward to your reply.

 

Penny


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 3/1/2009 1:53 PM (GMT -7)   
pscwife,

My fathers ESLD is a combination of fatty liver disease and over prescription of methotrexate. He has been told that a transplant is not an option due to his age and other issues with his heart – he has had a triple bypass due to failing artery strength.

I am not sure what his MELD score is – I have been to a number of appointments with him and it has never been mentioned. – It may be that they do it slightly differently here in Australia but I am not sure that is the case.

My kids seem to understand that pop is sick and that he is having drains done but they can not understand why. My son and dad are great mates and love spending time together, my daughter is a little terror and gives dad quite a bit of grief. I think that dad appreciates the interaction but is disappointed that he can not play more or take them to the park or swimming…

I get a feeling that the doctors have come to a conclusion that there is nothing that can be done for my father and it has taken a bit of time to get an agreed care plan from the specialists.

I guess it is now a waiting game….
Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/1/2009 3:09 PM (GMT -7)   

Tazdevil, if your father is not a candidate for transplant, then there would be no reason for them to keep a MELD score on him, as that is the tool that is used to categorize a patient for transplant (high or low on the list according to score.)

Ask the doctors to be frank with you so you know what to expect.


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


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 3/1/2009 3:45 PM (GMT -7)   
Hep93, Thanks for the information. I guess the MELD score could be looked at in terms of the seriousness of my fathers condition??

I understand the MELD is the average of the last three blood tests, is that correct?
Tazdevil,
 
The roller coaster continues.......


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/1/2009 8:05 PM (GMT -7)   
Hi Tazdevil, The meld score is done using the creatinine, bilirubin and INR from blood tests. I don't think it truly gives the seriousness of a person illness with this disease though. There are other things that transplant centers take into account and adjust the meld score, but I am not sure what they are. I am so sorry that your father is not a candidate for transplant. He is lucky to have you. I am sure your children bring him much joy. I have two grandsons, and they make everything seem so much brighter. I would probably be in a deep depression without them.
Butterflythree
 
There is always hope!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/1/2009 8:10 PM (GMT -7)   
Tazdevil, If you look under the post "We have a liver" page 6, started by pscwife, Penny has done a great job explaining how the MELD score works.
Butterflythree
 
There is always hope!


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 3/4/2009 12:54 PM (GMT -7)   
Quick update, dad came out of hospital last night after haveing a drain. 18.5 litres was removed. His last drain before that was on 02 Feb 09 where another 18 litres was removed. He seems a bit happier and his slurring has reduced a bit. His breath is still really bad ut i guess that comes with it.
Tazdevil,
 
The roller coaster continues.......


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/4/2009 5:09 PM (GMT -7)   

 

Hi Taz,

 

Sorry I didn't get back with you.  I've been pretty preoccupied at work and lost track of you in all the topics.  I want to do some research for you on how livers are allocated in Australia.  I'm simply not familiar with how they measure ESLD.  In the US, the MELD score is used to determine the stage of ESLD and to prioritize a candidate on the transplant waiting list.  I’m sure they have a similar system in Australia.  At least with this knowledge, you can determine where he is at in the course of his disease.

 

Regardless, it sounds like your Dad’s heart is in bad shape.  Liver transplant surgery is very difficult on the heart.  The liver is packed in ice and filled with potassium to preserve it.  Once it is placed into the new host and blood begins to circulate, the potassium is released into the blood stream.  An overload of potassium can cause heart arrhythmias.  The blood is chilled also which can be a shock to the heart.  The danger is his heart could stop during the operation and they wouldn’t be able to restart it.  In Harvey’s case, our cardiologist told us he would have no problem with the surgery.  The transplant team at Shand’s told us the opposite.  Florida Hospital agreed with our cardiologist and he was subsequently listed then transplanted. 

 

As for your Dad’s ascites, WOW 18.5 liters!  He must have been absolutely miserable.  He may or may not be a candidate for the TIPS procedure depending on whether the doctors believe it is safe to attempt.  This would give him some relief of his ascites, but brings other risks along with it.

 

I sure the children lift his spirits.  So long as they are comfortable with the fact that he is ill, I would recommend regular visits. 

 

I’ll let you know what I find regarding your liver allocation program.  In the meantime, you will be in my prayers. 

 

Penny


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 3/4/2009 6:38 PM (GMT -7)   
Penny,

TIPS has been ruled out by the specialists already due to the other risks that come with it.

I think that he is having trouble managing the medication with the changes that are occurring and the rate of build-up of fluid. If he does have a problem with his kidneys I would thing that the grand finale will be not too far away.

His weight has decreased by 1 kg in the last month despite being on a strict high protein diet. I think thing are starting to stack up against him.

Taz
Tazdevil,
 
The roller coaster continues.......


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/4/2009 8:12 PM (GMT -7)   

 

Taz,

 

It appears that liver allocation in Australia is regulated by the ANZLT (Australia and New Zealand Liver Transplant) registry.  Australia doesn’t use MELD scores, but clinical judgment instead.  Their website is http://www.anzltr.org/  Click on Members and locations to determine the centers that may be of assistance to you. 

 

Fatty liver is usually reversible if recognized and treated. This is dependent on how long he’s had the disease and how severe the liver damage is.  Conditions that can also cause fatty liver are; alcoholism, malnutrition (especially when there is not enough protein in the diet), obesity, diabetes mellitus, Reye's syndrome in children, and poisoning.  You indicated that prescription medication contributed to his condition.  Is he still taking methotrexate? 

 

I can certainly relate to the helplessness you are experiencing.  Based on what you describe, it does look as if the odds are stacking against him.  However, the human body is remarkably resilient and so long as the complications are managed, he may hang on for far longer than you expect.  Don’t give up hope.  God is good and he has a plan for each of us.

 

Try to keep his spirits up and let your Mum lean on you.  She needs your emotional support whether or not she asks for it.  I wish you and your family all the best.  You are in my thoughts and prayers.

 

Penny


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/4/2009 8:17 PM (GMT -7)   

Taz,

 

In regard’s to your Dad’s breath, you are right, it does come with it.  It is hepatic encephalopathy, which is the result of toxins (especially ammonia) building in your Dad’s bloodstream. 

 

Is he on Lactulose?  This is a synthetic sugar that draws ammonia to the intestines.  It works as a laxative and the goal is for him to have 3-4 bowel movements a day. 

 

Penny

 


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 3/5/2009 12:34 PM (GMT -7)   
Penny,

He is on Lactulose as well as a number of diuretics, beta blockers and tablets for blood pressure and his heart.

Taz
Tazdevil,
 
The roller coaster continues.......


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 3/6/2009 4:08 AM (GMT -7)   

Hey Taz,

 

I only have a few minutes (gotta go to work).  Is your Dad having 3-4 bowel movements a day?  This is very important.  If not, the doctors need to know this.  They may need to up the dosage.  If his breath is musty and he seems confused, his encephalopathy is not under control.  Lactulose can be increased until he has diarrhea then reduced once his head clears.  During this course, extra fluids would be recommended to avoid dehydration.  Of course, it's up to his doctors to advise you. 

 

I'll be praying for you.

 

Penny


marketa
Regular Member


Date Joined Apr 2008
Total Posts : 26
   Posted 3/22/2009 7:18 PM (GMT -7)   
Hello Good People
 
haven't been on the net for a while, I have mades a mess of thing. To make a long story short my drinking is so out of control. I have begun to have slight problems. I must make a choice or death will be at my door. I have started to even experience drugs.Mess I must say. Excuse is sad but true. I want to stop and it may seem that I don't want to get well,but I do and I am so happy that I am back among family again. Please someone read me my you know better than that rights
 
 
 
 
                                                          in distress
                                                              Marketa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/22/2009 8:26 PM (GMT -7)   

Marketa, do you have a detox center you can go to near you?  It sounds as though you might need some inpatient detox for 10 days, if not a 30-day inpatient program.  As you know, AA is everywhere, even on the Internet, so there is no excuse for not going to meetings.  Of course, it will do no good if you go when you've been drinking.  Please get help!  I don't think you can do it alone.  You very well know where this will lead...quickly...if you don't stop now.

I'll be pulling for you.  You can do it.

 


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 3/22/2009 9:11 PM (GMT -7)   
((((Marketa)))), I know how hard it is to stop drinking.........You already know what it is doing to your liver so I won't go there......... Only you can make that first step. Connie gave you some good advice.........get help.

We all will be praying that Jesus will give you the strength to quit for good.

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.


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 4/6/2009 5:32 PM (GMT -7)   
G'day All - Update time.
 
My father had another drain last week and they got 15.5lt. He was sick last night and fairly disoriented and slurring but he appears ok today.
 
....and so it goes.
Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/6/2009 7:23 PM (GMT -7)   

Hi, Taz.  Thanks for the update.  It amazes me how much fluid they pull from your dad.  I don't think anyone else here has reported that much. 

Take care and keep us posted.


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


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 4/6/2009 8:02 PM (GMT -7)   

 

Taz,

 

It’s good to hear from you—wish it was under better circumstances.  I’m so sorry that you, your family, and your Dad are suffering through the effects of ESLD.  You are right, it is a roller coaster.  I hope the doctors find a way to get his acites under control.  If he is not a candidate for transplant surgery, the goal is to keep him as comfortable as possible.  It’s a difficult task and easier said than done.

 

I continue to pray for all of you.  Take care and let us know how things are going from time to time.

 

Penny


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 4/6/2009 8:16 PM (GMT -7)   
All,

I will keep you posted as there is consolation in your support.
Tazdevil,
 
The roller coaster continues.......


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 4/23/2009 3:34 PM (GMT -7)   
Hello all,
 

Well it happened again....hepatic encephalopathy struck dad down two nights ago. Mum found him in the middle of the night not knowing where he was. He was not able to stand or talk coherently. He fell asleep again but the result was hospitalisation though the Emergency Department.

 

He will be in the hospital for a few days until they get it under control.

 

Unfortunately, my 4 year old saw the whole thing, so we have been having long chats about what is happening to ‘Poppy’. I think he understands and I know that I can only protect him so much from seeing what is going on.

 

Until now I thought it was going fairly well with my father but I have noticed that he is a lot less mobile and energetic. He is quite irritable and argumentative. He is loosing weight and now looks like and old sick man. cry


Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/23/2009 5:08 PM (GMT -7)   

Taz, I'm really sorry.  It sounds like your dad's liver disease is progressing.  The irritability and argumentativeness are a result of the encephalopathy, and probably also from just not feeling well.

I know it must be really stressful for you and your family.  Please remember to take care of yourselves.  And 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

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