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