Hello Glwired, Your friend is very lucky to have such a compassionate friend . My husband has had liver disease for almost two years and since he quit drinking has done much better, it constantly amazes me what the human body can endure so don't give up hope for your friend. This forum has really helped me to deal with it all and not feel so hopeless, the encephalopathy is the worse part of this disease, when I first found out he had cirrohosis I just knew he was going to die but he is hanging in there waiting for a transplant. There is always hope,
Hi, Glwired and welcome to the forum. I am sorry your friend is in such bad shape. PinkGrandma mentioned that he doesn't have encephalopathy yet; however, you mentioned in your post that at one point he was "disoriented and falling." This could have been encephalopathy, which is a very high amount of amonia in the system. Or it could have been something else. At any rate, I was surprised about the emphasis on protein, as most hep C patients are told not to consume much (if any) animal protein, especially beef, as it is hard for the liver to break down. However, with his muscle wasting, I can see the need for protein. It doesn't have to be meat, though. Cheese, eggs, milk or ice cream, nuts, beans, all can supply the protein he needs. Iron is also not good for a damaged liver. Is your friend going to AA meetings? I would certainly recommend it, and the transplant coordinator will require it, if he is to be eligible for transplant.
As PG said, there is a topic on the symptoms of end stage liver disease. Not everyone gets all these symptoms and they may not be in that order. I was diagnosed with hep C in '93 and developed liver cancer and cirrhosis as a result. However, I am now cancer free and doing pretty well, aside from constant fatigue and elevated liver enzymes. I will be meeting with my hepatologist early next month to discuss possible treatment.
Your friend can improve by taking care of his health, meaning NO alcohol and a diet heavy on fresh fruits and vegetables. Also lots of water.
There is always hope. He is lucky to have you as a friend.
Post Edited (hep93) : 8/22/2008 4:12:14 PM (GMT-6)
Thanks guys for the info and encouragement. The list supplied by PG is very helpful. My friend did have a short period of elevated ammonia but it lasted only about a week and cleared up. I believe his lactulose was adjusted during that time and it seems to be working very well at the moment. I'm encouraged by his determination not to drink again and I believe him. His appetite is virtually nonexistent due to nausea that arises after a few bites so I suggested protein shakes using milk instead of water (it does make them taste better) and he tolerates those much better to supplement what little he eats...Hep93 you are right about the beef, he's not to eat any. There was something interesting that one of you mentioned about anger...I've certainly seen that flare a few times when he talks about his condition. I thought it abit excessive at the time and have learned to remain silent and just listen until he works through it then his mood will swing right back to the opposite. as I said it happens alot when he talks about his condition but can occur over other minor things. I thought it odd but now I see it is a symptom.
Hep93 mentioned AA and I know my friend has a big problem with this which stems from a bad past experience. There is only one meeting in his area which is 20 miles away and transportation is a bit of a problem (he is not physically strong enough to drive). I think his doctor has worked out an alternative with a psychiatrist that would be acceptable to the transplant board. I told him quite frankly that this was his life that is in jeopardy and he needed to do what he needed to do to live. I know he cheats some on the salt-he said he's found it easier to give up drinking than to give up salt. Again I repeated the same...do what it takes to live.
Yall have been very helpful and I appreciate your counsel ( oops my N.Carolina accent slipped out) I'll be in touch as I try to gain more understanding of this condition so I'll be a better help to him.
Thanks so much!
That's good that a psychiatrist will be an acceptable substitute for AA. You are right--your friend absolutely needs to do everything that is required of him to receive a transplant. about the salt: Lemon juice is a good substitute, as are herbs and spices, and even Mrs. Dash. When one gets used to less salt, things that you once found tasty (like chips) seem waaaay too salty. It's just a matter of retraining the palate.
Best of luck to your friend, and please do let us know how he progresses.
My husband has cirhossis. He was diagnosed a little over a year ago. He is having all the symptoms your friend has had. At one point early on they drained him three times in one week. about 25 liters. They put him in an ambulance and took him to Vanderbilt. I don't think the Dr. here had ever seen anything like it. He has never been a real salt freak but has had the same problem as yous friend. He just cannot give up the salt totally. It has taken over a year but we have managed (somewhat)to control the fluid problem. We were told to cook with NO salt then sprinkle about 1/4 tsp on the food before you eat it. It worked! Everything must be fresh no canned goods. He also has no muscle mass and has lost about 70 lbs. The soy protein is the best. The whey protein or any animal base (as my daughter would say if it has a mama) is no good. I was sure my husband was going to die a year ago. He was in the hospital every other week for over 8 mths. He has had three blood transfusions, been drained more times then I can count and also vomited for almost a year. They have finally got the vomiting and nausea under control. I hope I have helped you in some way. One of the hardest parts of this disease for me is I just can't seem to learn it all. It is so very complicated. So read as much as you can and thank you for being his friend. Its hard to immagine what any of us would do without friendship.
I see some striking similarities in what you described and what my friend exhibits. The rapid weightloss really scared me more than anything...so things are not as dire as I imagined. I've been reading through many of the older posts and it's been a big help in understanding the nature of the disease. Finding good informative material online is exhhausting...luckily or should I say providence led me to this forum. I've never posted to a forum before so it took me a few days to understand the ins and outs. I do feel more confident in helping my friend combat this condition through many of the suggestions that all of you have posted.
I looked through the booklist that is linked to the forum...any suggestions for making a choice? I'd like to get one of the cookbooks and one that explains the disease without getting too "greek."
I've also noticed a few mentions about some herbs...any thoughts or experiences with those?
Thanks in advance,
Hi, JoAnn. I'm glad you found us. Are you on a "water pill;" i.e., a diuretic like Lasix (generic is furosemide?) That would help a lot with your fluid retention. Also, strictly limit your salt intake. Canned foods have a lot of sodium, as do frozen dinners, so it's best to eat fresh or frozen vegetables. Get in the habit of reading labels for sodium content. These tips will decrease the swelling you experience.
Glwired, the only herb I know of that is specifically used to eradicate hep C is milk thistle. I know someone who cleared the virus with that. I took it for awhile, but didn't notice any difference in my liver enzymes, so stopped taking it. There are other things one must do while on milk thistle, such as NO carbonated drinks.
Grannypants, your diuretic dosage may need to be adjusted. You need to contact your physician and/or make an appt. to see him/her. Meanwhile, try to watch your salt intake and perhaps your fluid intake, as well.
Gary, I'm glad that your friend is coming out of denial. Do you know if he is on a diuretic ("water pill?") If so, he may also need to limit his fluid intake. The paracentesis ("draining" or "tapping") is not really dangerous, but anytime an invasive procedure is done, there is are always risks involved, especially chance of infection. I know there are people here whose mates have been drained more than once a week.
Try to get his meds straightened out for him. If he takes a lot of pills, a weekly pill container may help. It has Sun. through Sat. compartments. I always set mine up on Sun. for the week. There are also ones with times of day, though those aren't as easy to find.
Take care and keep us posted.
Hey Connie,thanks for the quick reply. I am fairly certain that he does not take a diuretic. One of medical personal mention a some type of tube inserted into the abdomen that he could unclamp and drain himself. I can't recall the actual name but if the condition persists and becomes more frequent I believe he will ask about it. Yeah I was also thinking about the pill container that has the times of day since there is a couple of meds that he takes throughout the day but loses track of taking them on time or forgets altogether.
Gary, what you are describing sounds like some type of drain. I had my last one for about 2 weeks. This was due to fluid in my abdomen after having incisional hernia repair. Prior to that drain, I had 2 others and they clogged up (with tissue, clotted blood) within a couple of days. There were two different kinds, and both were able to be emptied by me. There is an indwelling tube that is stitched in place on the outside, and at the end of the tube is a type of collection device marked in cc's. I'm thinking that is the type of device that has been mentioned to your friend, depending on how much fluid he has. They probably have larger collection devices than the ones I had, though. The patient has to wear loose shirts and be able to clip the tubing onto an article of clothing. Pants pockets also work for holding the collection device.
Thank you, Gary! I am so very happy to have found this post......I have really felt alone in dealing with all this, and looks like I may learn so much from you guys! You know, when you are going through this, no one around you really understands....so very comforting to know I can have a "sounding board" here.....
Will pray for you that are the actual patients. Watching my husband go through this has really given me new perspective......