Hi, Vasquez, and welcome to the forum! I'm so sorry that your husband is fighting liver disease. It's a hard battle and hard on the family, too, as you know.
I know you will find a lot of support and information here.
Yamaha, are you still around, perhaps lurking? How are things going?
Tripp, I'm glad you found us, but sorry that your husband has become so ill. If he would only let Hospice get involved, they could be a big help...and also give you respite support. You have so much on your shoulders, you need a little time for yourself now and then. That's not being selfish, it's necessary.
You said the info you receive is "generic." That is because there are certain things that are common to everyone with liver disease (such as the horrible fatigue), but at the same time every case is different.
When he was first diagnosed, was a transplant ever mentioned? It sounds as though he would not be a good candidate now.
Just know that we are here to offer you support and our prayers are with you.
Tripp, I am glad to hear that you have some family nearby. My heart aches for you and what you are going through.
Remember, we are always here.
You've come to a good place to talk, learn and vent. My friend who suffers from cirrhosis and esld often does not seem to realize how her illness affects others in her life. I suppose with her day to day troubles and the fear of losing her life that it is easily understood. However, I watch her signficant other go through helping her and yet she doesn't seem to understand that this is happening to him and to her children too.
What I am trying to say is that wondering how much longer and what else is in store is not as selfish as it sounds. Anyone who has been in this situation understands where you are coming from. Take each day as it comes. Try to start figuring out what you will do when you need another income. It may seem that you don't have time for this now, but it may help you to get to a better place in your own life if you have some sort of a plan for later.
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.
Tazdevil, welcome to the forum. You might want to start a new topic to introduce yourself--don't want to see you "fall through the cracks" on someone else's thread. I am truly sorry for the pain you and your family are going through, in watching your dad decline. Unfortunately, there is no set answer to the question of "how much longer?" Each case is different. You really won't know until it's the very end. In my case, I had a death sentence of liver cancer from hep C...but I'm still here (20 mos. after treatment and surgery) and am stable. So one never knows.
I know you will receive a lot of support here. Please look over some of the educational threads here, as well as older posts, for additional info.
Thank you all for your support. I know that the ride will be long and bumpy. I am not sure what is going through my fathers mind about his disease. I think he is in denial blaming his symptoms on anything but his liver condition. The doctors have him on a high protein diet to minimise muscle wastage but he is looking very thin at the moment.
I also found out that he is eating salt by the teaspoon full I know that this is not going to help him one little bit. I almost think he has given up but is keeping a brave face.
I have seen a number of encephalopathy events and have even had to pick him up off the floor due to weakness during one of these events. I know what the end result of this disease is I would just like some warning when that time is coming. I do not know what to look for!
Tazdevil, yes, that's really horrific about his salt intake! I know that some people just slip into a coma at the end. Others sleep 22/24 hours a day. The kidneys will normally shut down shortly prior to death. These are things you can watch out for as warning signs that the end is very near.
Keep us posted!
Tazdevil, don't worry about "whining." We all do it at one time or another. Is your dad on Lactulose for the encephalopathy? Hopefully, draining will give him some temporary relief from the ascites. Is he on diuretics such as Lasix?
Hello Tripp, I am sorry. I missed your first few posts somehow. I want to welcome you to HealingWell. I am sorry that you are going through this........but it is good that you found us.....
You are absolutely right about talking with people who know exactly what you are dealing with. All of us, are there, or have been where you are and totally understand your feelings. I felt so alone before I found this wonderful site......That's what we are all about. To help each other through a very difficult road of life. Each road has different bumps and turns, but all the roads are difficult to travel for the patient and caregiver alike.
Hang in there........we'll be here whenever you need us.....
Thoughts and prayers........