Amee, welcome to the forum. You have lots of company here. As far as your brother-in-law is concerned, it could be that he is in denial. Beachygirl, thanks for the suggestion of the book. I might look that one up myself. As she suggested, you could get that for him to read. The library might have it or you can go to alibris.com for a used copy (if they have it in stock.) Your other alternative would be to confront him and tell him he is NOT a doctor and that your mother-in-law's doctors are fully aware of what is going on and how to treat her, and that she needs to comply with their orders to at least feel somewhat better, if not live a little longer.
Have your husband ask his mom's hepatologist about Hospice and if he thinks a referral is in order at this point. A doctor does have to order it. It would mean no more active treatment, just palliative ones to make her comfortable (and I believe Lactulose would be part of that.)
I hope you will read some of the older posts and also continue to post here and let us know how things are going.
ETA: Rather than procrastinating, I went straight to alibris.com and ordered the book. They have a number of good, used copies for $1.99 plus $3.99 standard shipping, if anyone is interested. You do have to register with them, but it's free. You can use either Pay Pal or a credit card to purchase.
ANOTHER EDIT: After placing my order, I went to half.com (a subsiduary of e-Bay where you can buy direct rather than bid) and found a number of copies of the book in varying conditions, from .75 cents up. I then tried to cancel my alibris order, but they do not accept cancellations after you have clicked on "confirm order." Oh, well. It's only a couple of dollars difference, but these days every cent counts.
Post Edited (hep93) : 3/21/2009 11:33:18 AM (GMT-6)
Amee, I'm glad to hear that you already have help in place and that your mother-in-law is being evaluated for a transplant. You seem to be handling things well and doing all the right things.
Feel free to post anytime, even just to "vent."
Hello Vana and welcome to HealingWell. Sorry that both have to deal with this disease.
Do they have your husband on diurectics? If so that will take care of some of the water retention. Figure out how much fluid he is taking daily and maybe substitute a little water a few times a day. Maybe that will satify him a little.
Beachygirl is giving you some good advice......emergency room for the high ammonia levels....... I haven't heard of them giving the lactulose intraveneoulsly though....I have heard of them giving it as an enema when they can't take it by mouth.
Post Edited (Pink Grandma) : 3/22/2009 9:01:57 AM (GMT-6)
Vana, I want to welcome you to the forum. Also, I have bumped some educational threads about encephalopathy (caused from high ammonia levels and treated with Lactulose) and one about the stages of liver disease. I hope you will read these, along with any other educational threads that may be of interest and help to you.
There is a lot of good information on this forum, and the best thing you can do is to become very educated about the disease. Is your husband under the care of a hepatologist? If not, he should be. ER and primary care doctors are not equipped to deal with liver disease. Also, a hepatologist can refer your husband for transplant evaluation. It may not be too late right now. It sounds like his worst problem is encephalopathy right now, but he needs a good workup.
I have never heard of distilled or spring water being bad for liver patients, unless one is retaining water or has been restricted as to fluid intake. If your husband's feet, legs, and/or belly are swollen, he is retaining water and likely has ascites. Diuretics ("water pills") are generally prescribed for this, and sometimes fluid restriction.
You asked about diet. Restrict or completely eliminate red meat as it is the most difficult type of protein for the liver to break down. Fish is good and chicken is fine. Lots of fresh fruit and vegetables will be of great benefit. If he hasn't much of an appetite, try Ensure or even Slim Fast (I like Chocolate Royale.) These have calories and many vitamins and minerals. Low-sodium V8 juice or V8 Fusion is good. Puddings. Anything with calories and nutrition that you can get him to eat, even if you have to feed him yourself.
The most important piece of advice I can give you at this point, Vana, is to get him under the care of a hepatologist, if he isn't already. And also remember to take care of yourself...take time for yourself or you will burn out fast in the days and months to come.
We look forward to hearing more from you.
Amee, I'm sorry you and your family are having a difficult day. Liver disease is a roller coaster ride, that's for sure.
I recall someone recently mentioned a rash as being a reaction that sometimes happens with cirrhosis. I do think it's fairly rare. I hope that the doctors get to the bottom of it. Her ammonia level may also be elevated.
My prayers are with you all.
Post Edited (hep93) : 3/27/2009 11:04:08 AM (GMT-6)
Amy, has she signed a DNR? She also needs to know that she also has the right to refuse treatments of any kind at any time. All patients have that right. Of course, if she has infection she should get that treated. Does she have hep C? If so, ask the doctors if the rash could be caused by that or by her cirrhosis, especially given that her liver levels are increased.
Keep us posted and get some rest.
Thanks Hep93 for the valuable information. I took my husband to the ER today. his ammonia levels were 124 but we also found out that we maybe be fighting another issue. They said that his calcium levels were really high I think they said 15 and that in cases like this it sometimes means cancer. They took a ct scan of is chest because he was having some pain in his left shoulder blade and also under it well they came back with what they say is a small mass in his lower left lung that measures 34x35 mm. I will know more tomorrow. I left him resting and came home to my 8 year old who I find has so many questions I trying to find the right words without getting him worried about his dad. I have not broken down and today I realized that I am stronger than I thought I was. My strength I find thru prayer and trying to stay positive. My husband I could tell was worried when they were talking to him about the mass but I think that the ammonia levels being high and he being disoriented was a blessing in disguise because the results did not hit him as hard as i thought that it would. I know that in the coming days when he returns more or less to normal and is thinking more clearly that at time I will have to explain again about his lung.
He has been seeing not a heptologist per say but a gastrologist I hope that is how you spell it. He had a liver biopsy in Oct 2008 and the Dr. said at that time that he was in stage 2 of hep C.
Transplant was discussed briefly but we were told that it would not be considered because he had other health strikes against him. He has type 2 diabetes / heart attack and 3X bipass in 2004 and that more than likely they would not put him on a list because of this. Well I guess now it's really not likely to happen with this lung mass that he has now. I will stay positive that is all that we can do. Please keep my family in your prayers as I will for everyone who is affected by this illness. Aimee a special prayer goes out to you, you are carrying a heavy load but remember if he brought you to it he will see you thru it. Never forget that the Lord is mighty and he is capable of the impossible give all your burdens to him and he will carry you thru.
Vana, sorry I missed your post. I know the news about the mass on your husband's lungs is scary. I've lived through liver cancer, so I know all the thoughts that start racing in your head. Once the testing is complete, the decision will be made about surgery.
Since your husband is not a transplant candidate, I think it's even more important for him to be under the care of a hepatologist, if possible, to manage his liver problems and give him a better quality of life. However, if it turns out that he does have lung cancer, an oncologist will probably be more important if you feel okay with the GI doc he is seeing. I know it can become overwhelming to have a host of new doctors to see. ("Been there, done that.")
You are right...God and prayer will give you strength you did not know you had and will see you through whatever lies ahead. Please do keep us posted.