Cirrhosis, kidney disease and heart problems

Hi, I just found this site, and although I don't expect alot of answers, I'm hoping that someone else may have gone through what my family is going through and give me some inspiration. My dad is 79 and has had congestive heart failure for years now, including 2 leaking valves that he never had fixed. In July 2008, we were told that he had cirrhosis of the liver, but we weren't told much more that that. Fast forward to January of this year, he is hospitalized and we're told that he has stage 3 chronic kidney disease also. They told us at that point that he could still live for many years yet in his condition, which surprised me, but that he needed to get a paracentesis done every 2 weeks for the ascites problem. He was beligerent about this, but he's had it done 6 times since then, the longest span between procedures being 6 weeks at one time. They've removed at least 3 liters every time so far, and yesterday they removed 4 and one half. It had been 2 and one half weeks since the last time. He was hospitalized 2 weeks ago because the fluid in his abdomen infiltrated his lungs and he couldn't breathe. They in creased his lasix, so now he's on 160 mg. daily, which is bad for his kidneys. He can't take spirinolactone because they think he's allergic from a past experience. His legs are swollen up to his thighs, and sometimes he's a bit disoriented, but he doesn't seem to have the mental problems that I've read about here that help by taking lactulose (which he doesn't take at all-he tried it once and it gave him severe diarrhea). He doesn't have any constipation problems. I know this is rambling on, but does anyone truly think that he can live years like this? I live 5 hours away from him, and I count on siblings to let me know if I need to be there, but I can't be there all the time. Does anyone know how long you can keep having paracentesis this often? I just can't imagine this being the norm for cirrhosis patients, but I don't know. Any advice or experience that anyone has will be greatly appreciated. Thanks for just listening, and best wishes to everyone else dealing with this.

Connie, thanks for your response. The edema only goes away slightly after having his legs elevated. They are basically the same when he gets up in the morning after he's been off of them all night, which to him is at 6:30 in the evening until 9 or so the next day.

Yes, he has a Living Will and I am his advocate. He's made it clear that he doesn't want any measures taken to resuscitate if it comes to that. We've talked about dialysis, and he seems to think he'd try it if it becomes a necessity, but to be honest, I don't know if they'd let him do it given his heart issues. He has an appointment with his kidney doctor on Tuesday, but we already know that his creatinine level from his latest blood test was 1.9, which I know isn't very good. He only saw a GI doctor once, and he basically gave us no information at all- it was almost like he'd written him off because there wasn't anything else they could do with him. We asked for his MELD score, but he said that since he's taking coumadin, it would give us an abnormally high reading that wasn't true anyway.

 It just gets frustrating, as I'm sure everyone here can attest to from the forums I've read, that no one wants to give you any answers at all. He won't allow any help at home unless it's his children, and if it gets bad enough that we could call in hospice, I hope they let us know in plenty of time. Then, we could tell him that he could only stay home instead of a nursing home if he'd let hospice come to his house, and we'd know that he had someone to help if we weren't there. We've asked the kidney doctor if he has hepatorenal syndrome, because from what we've been told, it sounds exactly like that. He said that he wasn't ready to call it that, because that would be a death sentence. Sorry to ramble, but it's nice to get it down and vent about it! I appreciate your listening to me.

Thanks again for your post, Connie. I'm sure that the diuretics are a problem, because when he went completely off of them in January when in the hospital, the creatinine level started to drop. The problem is his heart, because has to take this much lasix to keep the ascites from seeping into his lungs and for his heart failure. I know it's a catch-22 and that's so irritating because you have to take something for one thing that damages another. I don't know if we'll be able to get him to another doctor, since he complains regularly about the ones he's going to now. He sees a blood doctor every Friday to get a procrit shot because his kidneys are slacking off on making red blood cells, and that's on top of the paracentesis and seeing the kidney guy. He hasn't even seen his cardiologist except when he's in the hospital. We also know that his kidneys are fine. I know that sounds weird, but that's why we think it's hepatorenal syndrome. The kidney guy told us that if he had a liver transplant, his kidneys would be ok, or if you gave his kidneys to someone else, they'd work fine. It's how his liver is reacting with his kidneys. I sure appreciate your helping me out, and I hope that you are doing GREAT! Cindy

That's one of the hard things to do- just accept what the person with the disease is willing or unwilling to do. I'm glad that you're stable and I hope that it stays that way for many, many years to come.

I'm glad to hear that you're doing so well. Cancer is such a scary word to hear. I was diagnosed with melanoma in April 2008, but I was lucky in that they got it at stage 1. I still have regular check-ups with a dermatologist and oncologist, but the outlook is good.  I pray that you continue cancer free! Cindy