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

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.

 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.

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........

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….

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, 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.

 

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

 

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

Penny,

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

Taz

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

((((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.........

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.

All,

I will keep you posted as there is consolation in your support.

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