Well hello everyone . I was recently sent a link to this forum from my dads girlfriend. He was diagnosed with ESLD, secondary to hepatitis C, ~ 4 months ago. He will be 53 yo in 2 days. Im having a very hard time dealing with and trying to make sence of all the symptoms he is going through. Im a nurse and I'd like to think of myself as educated but I found Im just as lay as non health professionals when it comes to this. I live over 2000 miles away from him and I HATE it. There is not much I can do over the phone but Im doing all I can. Im hoping to get some encouragement and support from this site.
My dad was diagnosed years ago with bipolar disorder as well. He is having a difficult time with this his new diagnosis and Im having a hard time determining if his mental state is from the bipolar or the ESLD. He is taking meds for this however he goes though stages of depression where he just wants to give up and other days we cry together and he says he'll fight with every thing he has. Im so confused and I cant pinpoint why everyday is a rollercoaster of emotions. He has always been a sharp man but his ability to be rational and make sound decisions comes and goes by the day. Its almost like he has dementia. I understand the ammonia levels and other electolyte imbalances can cause this but will this ever get better when things are better controlled?
My dads edema was causing him serious breathing problems and he has since underwent the operation in which the lining of the lungs were sealed by talc to prevent fluid from filling the plueral space. This was successful but now his abdomen looks like a basketball(I've seen through e-mail pics) His belly button is herniated and he is starting to have difficulty breathing again. I spoke with him on the phone today and he could hardly talk and was panting like a dog. I made him go to the ER 3 days for a theraputic paracentesis (TAP) and they sent him home saying they dont do that because it will just fill up faster and since he was having no difficulty breathing (at that time) it was not needed(which I know is b.s.) They increased his lasix and spiractalone, put him on a NO sodium diet and sent him on his way. Its now 3 days later and he is in respiratory distress. He is so uncomfortable, cant sleep, get up and walk or even talk. Im afraid the pressure in the abdomen will cause the talc seals to break...Am I nuts? Not to mention its theraputic to give him comfort and some quality of life. Being confined to bed is no life...I understand that the disease cannot be treated but I know the syptoms can. I spoke with his PCP and will see him tomorrow re: this. Hope all is well through the night. Im hoping this new diet and med regimen will allow him to live a half way normal life.
Everything is happening at such a slow pace for my taste. Finally after 4 months he is going to see a gastrenterologist for this. The closest Hepatologist is 6 hours away . I want to get him on the transplant list and I've even considered being a live donor and giving him part of mine (I am a blood match). But even this I know very little about. Im trying to help him through this but being so far away from him there is only so much I can do. I feel helpless Thank god he has a very supportive girlfriend who is sticking right my his side. God bless you Judy !
Im looking for some advice on how to be more proactive about the future and what to expect for today. Im open to it all. Thanks so much for reading.
I am Judy and everything Christina wrote is what we are going through. I can tell you he almost died on me on the way to the hospital on one of his er visits, his right lung was completely filled and he was gasping for breath and he did not know where he was. He had the talc seal done after that and was sent home and had to go back and have it done 3 more times till they let him come home. He came home Christmas Eve Eve and now we are dealing with the acites. He is on the water pills and only problem is that they make him so lathargic. I plan to take him to the Dr at 11:15 AM and will let you know what he says.
Yes I did show her this site I was reading it and so amazed on how wonderful every one is here. I joined too