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Posted 3/20/2009 8:30 PM (GMT 0)
Hello everyone,

My name is Amee, and my mother-in-law, has recently been diagnosed with ESLD. She had 3 liters of fluid pulled form her abdomen, and it was infected. She is very swollen in her legs, feet, and abdomen.

On March 4th, my husband and I found her unresponsive in her bathroom. We first thought that she was dead just from the way she looked. She was blue, cold and stiff. I felt for a pulse, and realised she was still breathing. My husband called 911. She was in the hospital for two weeks. She has hepatic Encephalopathy. She came home this past Wednesday. She is on laculose twice a day. Along with a blood pressure medication as she also has portal hypertention. She is also taking levaquin for the infection once a week, along with some vitamins, and some medication for circulation, as well as a water pill.

My husband and I are on the same page, and understand that this is a very serious condition. However one of my husbands older brothers, is not understanding at all. He want's to play doctor and tell her not to take certian medications such as the lactulose and the blood pressure medication. I have a huge problem with this because, number one, I've seen what not taking you medication properly can do. My father died a terrible death because he refused to take the medications. Secondly, she lives with me and my husband and our 3 year old son. I don't want my son to see his grandma suffer like I watche my father.

How can we get the rest of the family on board. He keeps telling the doctors that they are wrong, when we've already had 5 seperate doctors say the same thing. She is now in renal failure. I'm not sure how much longer she can hold out. She has suffered with depression and I see it in her eyes, that she thinks it is easier to give up than to fight.

I just need some support. I don't mind to help her, and cook, clean all that is easy. I just want and need her family on the same page, and understand that we all want her to get better and live and see her grand chilren grow up and start lives of their own.

Any help would be great and welcomed.
Posted 3/20/2009 9:42 PM (GMT 0)
Dearest Amee,

You are really going through a lot. I found the "Bible of Liver Disease". The book is called Dr.Melissa Palmer's Guide to Hepatitis and Liver Disease by Melissa Palmer, M.D. If you have time, read it and you'll understand the fight you're up against with this horrible disease. I know more about Cirrhosis of the Liver, Hepatic Encephalopathy, stroke (my Mom has had two), etc. than her primary doc. He was looking up the stuff I was suggesting in his blackberry during the visit. The book has really helped me and my sister be able to take care of Mama and watch for the signs of deterioration. I told my Mama, the Lactulose is saving her life right now. She has a good day or two then a bad day. It is definitely frustrating to watch. I have 5 children ages 2-13 years old and homeschool the 3 oldest. My Mother lives with my sister but I go over and see her every night because I want to spend as much time with her as I can. Nothing else is more important right now. I am and have always been very close to her. My children see her as often as I can handle getting them over there. That's the most important thing and the best medicine. I don't think your child will be scarred if she sees grandma like this. I don't remember anything at 3 years old. Your child is what is keeping her alive probably. Children give people a reason to live. Just give that book to your brother-in-law and have him read it. He may read it just so he can prove himself right, only to find out he's trying to rush her exit out of this world. (Maybe he is). If I were you, I would call Hospice in now and get that set up so she doesn't have to go through the pain your father went through. If she has given up (and I bet that is just the encephalopathy making her look that way, my mother was the same way, the doctor put her on Paxil before we realized it was the ammonia level making her act that way), Hospice can make it so much more comfortable and she can pass painlessly and peacefully surrounded by love which is what we all wish for ourselves and especially our Mama. I am just another daughter dealing with my Mother's ESLD, I am not a doctor. I hope you take these as suggestions only. I don't know your specific situation so I am only responding to what you wrote. You came to the right place for support. I have spent many hours obessively reading posts from this site and the resources from this site. I've also searched the internet to death for information. We do have to be their "doctors". My mother has so many, we have to give each doctor the whole story at each visit so they are all on the same page. God bless you.

Posted 3/21/2009 4:50 PM (GMT 0)

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."  shakehead    Oh, well.  It's only a couple of dollars difference, but these days every cent counts.

Posted 3/22/2009 1:14 AM (GMT 0)
Thanks so much. I will get the book. I can use all the help I can get.

Today was a very busy day, we had all of the family over. I just hope that we can all get together and talk toning. I think it is important that everyone know that if she is going to stay here with us, that they need to respect the fact that we are going but the doctors orders.

Hospice comes twice a week, and a nurse assistant comes two different days. So I am very greatful that I have them to lean on and inform me of what to look out for as well. My mother in law is a fighter, and part of me wants to believe that she will fight thru this but there is a part of the that wonders when will she get tired of fighting? I hope that doesn't sound harsh. I love her and would love for her to see her grandchildren graduate college, get married ect. But I don't know if she will make it. I can only hope so. I do believe that God can do anything, and I will continue to pray that she makes it thru.

Thanks again for all of the input!!! I will keep you all posted, we have an appointment next Thursday to meet with the transplant team at UMDNJ. I will let you all know how that goes.

Posted 3/22/2009 2:21 AM (GMT 0)

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."

Posted 3/22/2009 3:01 AM (GMT 0)
I am new to hep c and all it's effects. My husband was diagnosed 2 years ago. He tried the treatment for hep c but quit after 2 months because the side effects were so bad. This past year

his Dr. told him that his ammonia levels were really high and pt hom on lactulose. He quit taking it in Nov. 2008 because he said that he was tired of going to the bathroom all the time. this past week I have been on spring break and I noticed that he has slept at least 22 hours of a 24 hour day. When he is up he is so dizzy and confused that he sounds drunk. I really thought that he had a stroke from his slurred speach and weakness. But as I was reading this forum I have quickly found out that it could be his ammonia levels are so high that it is causing the confusion and weakness and loss of apetite. I got him to take some lactulose tonight after dinner which he only had a fews bite of. What is a good diet for him to be on? I alos read that water is not a good thing to be drinking and that is what he is most requesting. Any help would be greatly apreciated.

Posted 3/22/2009 3:39 AM (GMT 0)
Hi,
If I were you, I'd get his doctor to check his ammonia levels Monday morning! He sounds out of it. Because of the encephalopothy, he doesn't know his ammonia levels may be up so he isn't aware of anything being wrong. They are so out of it. He may need to be given lactulose intraveneoulsly? It depends on how high it is.
Posted 3/22/2009 3:47 AM (GMT 0)
thanks for the info. and you are right he is so out of it he is getting lost in the house. I just helped him out of bed so that he could go to the bathroom and he went to the livingroom and kept asking me where is the bathroom? When I told him it was at the other end of the house he got b=very irritated with me. Is this also something that happens?

Posted 3/22/2009 12:16 PM (GMT 0)
AmeeP, vana44, and beachygirl

Just wanted to welcome you all the forum, and to express my regrets that you and your families are having to deal the this horrid disease. My thoughts and prayers go with each of you.

Lucy
Posted 3/22/2009 12:48 PM (GMT 0)
Vana44,
If I were you, I would take him to the emergency room and tell them to check his ammonia levels. This is not something doctors usually check for so we tell them to do that first. The blood has to be put on ice so they can't do it in the doctors office anyway. So if he is that out of it, his ammonia levels are most likely up. The first sign of irratibility we see in Mama, we ask her if she wants some more Lactulose. We do laugh a lot with her about this. She is being a good sport about it. Mostly, she loves the attention she is getting from her two daughters. I've also read you cannot overdose on Lactulose.
Posted 3/22/2009 12:49 PM (GMT 0)
Vana44,
You might want to try some Ensure. I heard that is good for them too.
Posted 3/22/2009 2:54 PM (GMT 0)

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. 

Though you can not over-dose on lactulose.......if a patient has too many bowel movements...other things are affected besides the inconvience......My husband's doctors didn't want him going more than 2-3 times a day.  If he did......they cut the lactulose dosage back down.......I think most doctors like 2-3 times a day for bowel movements as a rule....Most of the meds are a tough balancing act.......Consult his doctor as to what he wants. 

I also want to welcome you Amee......Denial seems to play a big part in this disease also......if it's not the patient .....sometimes family members don't want to face it......It's a hard pill to swallow.....a person's mortality comes into question with it......Hang in there you have gotten some great advice.........

Again......welcome to HealingWell both of you ..........thoughts and prayers..... 


Posted 3/22/2009 4:04 PM (GMT 0)
Thanks for all the advice and support. Just being able to talk to someone who is knowledgeable helps. my thoughts and prayers go out to all who are fighting this disease. Beachy girl I ordered the book that you recommended to aimee. I want to get as much information as I can about this horrible sickness. Thanks to everyone for your help.

Posted 3/22/2009 8:50 PM (GMT 0)

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.

Posted 3/22/2009 8:53 PM (GMT 0)
I just wanted to add, regarding the Dr. Palmer book, I ordered it from Alibris yesterday afternoon and it has already been shipped!  Can't ask for quicker service than that on standard shipping!  Also, this is an older book, but the basics are certain to be there.  Although new treatments and procedures come along every day, the basics of disease and its progression remain the same.

Posted 3/22/2009 10:37 PM (GMT 0)
Well, today has been a trying day to say the least.

Yesterday my mother-in-law's sons, came for a visit. She did very well, and was up the whole day. She walked, and ate really well. I was impressed to say the least. But this morning I made her breakfast and took it to her room as she likes to eat in her room in the morning. So when I went in, she was difficult to wake. Finally I got her up to the edge of the bed, gave her her lactulose and other meds, changed her depends, wiped her down, and changed her clothes. She said she was dizzy, and wanted to rest a bit longer. So I said okay, I'll come up in a few minutes to help you get up. She only ate a bite of the eggs, and a bite of toast, and drank a few sips of her tea. After about 10 minutes I went back upstairs to get her up, and help her come down stairs. She was talking in a slur. I was concerned even more, so I took her blood pressure, it was slightly elevated. I called the on call home health nurse, who came to evaluate her. We then noticed that her face was swollen, and she had a rash all over her. She has not had any new foods or medications so we are puzzled as to where the rash could be coming form. The home health nurse paged the doctor, and when he called back he directed us to go to the ER. She is curently there, and I hope to have more answers tomorrow. I am very worried and don't want to scare her with anything, but at the same time, I feel that she knows that she isn't going to survive this, and I feel like she is okay with giving up. It's just hard to see this woman suffer like this. A part of me wants to say it's okay if you don't want to fight anymore, and the other part of me wants to grab her by the shoulders and yell at her to tell her that she needs to see her grand children grow up. I just don't know what is the right thing to do.

Just pray for us, we all need to be carried in prayer!
Posted 3/22/2009 10:51 PM (GMT 0)

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.


Posted 3/23/2009 3:09 AM (GMT 0)
Well, I'm back from the hospital again. Her liver levels were elevated, as well as her pancreatic levels. Her ammonia levels were great, and there is no confusion. However the rash is spredding and they now have called in Infectious disease speciallest. She may have MRSA. This really frightens me, she lives with me and I have a 3 year old son. SO I am WORRIED! They also mentioned that she could have a blood clot in her left leg, as it is very tender, and red, possibly due to cellulitis.

This evening she said that she just want's to die, that she is so tired of fighting. We all feel so confused as to how we are suppose to address this. Just such an emotional roller coaster for sure.

Thanks for the support and the prayers. I'll keep you posted as we know more.
Posted 3/23/2009 3:31 AM (GMT 0)

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.

Posted 3/23/2009 7:30 PM (GMT 0)
The doctors seem to think that the rash is form the Levaquin. So they have stopped it. The rash has faded some but is still there. Her hep C test was negative, as was the MRSA results. She has cellulitsis in her left leg, and may possibly have a blood clot. She is so depressed today. The ICU nurse told me this morning, that she was asking if any of her medications were Paxil, and the nurse said no, are you depressed. She said yes, I think a little bit, but I don't want the paxil, because my son told me not to take it. GRRRRR. That really upsets me. Maybe the paxil will make her feel better, but I don't think it would make her worse.

I just don't understand denial. I know that when my father was told that he had cirrhosis, we didn't want to believe it at first, but when we started researching the disease, we quickly knew that it was true. That is the problem, no one is doing the research, but me, and they don't want to listen to me. Yet they expect me to cook for her, clean for her, and dress, bathe, ect. Yet they don't want to hear anything about this disease.

I know that God put me here for a reason, and I'll be dammed, if I will hold my tongue anymore. They need to wake up. I am going to ask for a family consult with the doctors. It's time that everyone hear the same thing at the same time. Enough is enough, I have no other choice.

If she want's to sign a DNR, we will find out, but I cannot give up on her just yet, not that she say's she is depressed, and maybe the medication will give her the will power to fight to get better.

I'll keep you all posted. I've got to get back to the ICU now.

Thanks,
Amee
Posted 3/24/2009 5:10 AM (GMT 0)

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.

Posted 3/25/2009 1:45 AM (GMT 0)
Vana44,
Glad you got him checked out. I hope he starts feeling better and you find peace of mind soon. I'm praying for ya'll.
Posted 3/27/2009 10:28 AM (GMT 0)
AmeeP,
How is MIL? Keep us posted. Hope all is well.
Posted 3/27/2009 5:14 PM (GMT 0)

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. 

Hugs,

Connie

Posted 3/27/2009 7:20 PM (GMT 0)
Hello all.

I actuall have some good news. We have finally had a family break through. We all went with my mother in law, yesterday to speak to the surgeon at UMDNJ. He was amazing, honest and very direct. Now everyone is on the same page, and is more understanding to seriousness of this disease.

I am taking her back to the hospital on Monday morning, as she will be admitted for testing to see if she will be a good candidate for a transplant. The doctor wanted to admitt her yesterday, however she wanted to sign power of attorney over to her son, and finalize her living will. She also finally realizes that this is serious.

I know that most people would feel saddened, at the seriousness of her condition, but I honestly feel some relief. Now everyone is working together, to help out, and make sure that she is ready and willing to fight. She isn't giving us a hard time, about medication anymore, and is eating more, even if she doesn't want to eat, she is still trying to eat.

I will post again after I find out more on Monday.

Thanks to all for the prayers, and thoughts. It really makes it easier to know that I'm not alone! Good luck to you all.

Amee
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