Sister and cirrhosis of the liver

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dededew
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/4/2007 2:14 AM (GMT -7)   

Hello, I am writing regarding my sister in law. She is 52 years old. She never has been real healthy as she has gone through a lot of medical things. She is diabetic and also has bi-polar. about 1 year ago we found out that she had cirrhosis of the liver. She is not a drinker and has never been one. She also doesn’t take drugs other then the handfuls for her illnesses.

 

I went through liver failure with my brother Rocky in August 2004 so I know the signs of failure. He did not qualify for a transplant as his meld score advanced to quickly and they believed he was too ill to survive a new liver. He had encephalopathy a lot toward the end and he was on lactolose and also a antibiotic. Anyway I am so worried about my sister in law. I just went to visit her yesterday and her ascities in her belly is really bad. She gained 25 lbs in one week. I use to take Rocky in for a tap a lot toward the end because it was so painful for him to be so swollen. So seeing her so big brought back a lot of fears. The doctors that she is seeing really are not doing anything. They found the cirrhosis last year and said that we just needed to watch it. She also has varicies and had to go into the hospital about 1 year ago twice with in a month for blood in her vomit. That’s when they found the cirrhosis. Seeing her now tells me that I think she is in trouble. She has those skinny skinny arms and legs and the great big belly. She sleeps all the time and is exhausted when she is not sleeping. I have not noticed any encephalopathy yet but they did just find a lot of ammonia in her system and started her on lactulose 3 days ago and told my brother in law they were hoping that it would help her  ascities. I had not heard of using it for ascities before. I’m not real sure what to say to my brother in law, I don’t think anyone realizes how bad things are and I know that the doctors are not telling them anything to much yet. They have Kaiser in Portland Oregon. I  remember how much support I got from a support group when I was assisting my brother in his medical care and I decided to find a new group for some help and guidance now. Please let me know what you think about her symtoms and what I might say to my brother in law to get them on board without scary the daylights out of them.  Thanks Debbie


dededew
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/4/2007 8:14 AM (GMT -7)   
sorry guys I just realized that I didn't fill in anything on the subject line.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/4/2007 11:02 PM (GMT -7)   
Hello Debbie and welcome to healingwell. Since you been through this before with your brother there's not much I can tell you that you don't already know. I can only speak from my prospective as a wife of a liver patient that died also. I myself wanted to know everything. My husband didn't. He was to afraid to face what was ahead. To me, we couldn't fight it if we didn't know who our enemy was. I found the most information on the internet. (His doctors were not very helpful that way.) It took me awhile to find out about it but when I learned about googling there was no stopping me. So if your brother has a computer maybe you could tell him to google for some more information on the disease. Because I don't see anyway for you to tell him without scaring him silly. Me, I am direct and to the point. When it's a matter of life and death I don't beat around the bush. My family knows where my heart's at, even when I may be saying things in the wrong way. So if I offend anyone, eventually they are going to forgive me, knowing I was just trying to help. Is this your husband's brother? Maybe you could have him talk to his brother. Whatever the way I feel that at they should know what's up. They shouldn't be kept in the dark. Good luck on whatever you decide......Pink Grandma

dededew
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/5/2007 6:18 PM (GMT -7)   
Molly is my husbands sister and her husband is both of our brother in law. I have been pretty stright with the entire extended family about what I believe is wrong with her.  However they are the type of people who believe that if she were in trouble the Doctors would be doing more and saying more for her. ,,,,,,,,,,They think that I am jumping the gun and borrowing trouble, they believe that if it was that bad the doctor's would be doing something. And I do agree that normally the doctors do say things but so far all they have been told is that she has a bad liver and that they need to keep a close eye on her. They haven't even talked about what the future holds or what the plans are. I feel in my heart that I am right and that she is in trouble. They are taking her blood tests all the time now, but my brother in law says that they have never told them anything about the blood that they take except that her electrolights were bad.  I haven't spoke a lot to by brother in law other then what to feed her and to make sure that he weighs her now that they started her on dieritics and that I am very worried about her. She is still seeing her primary care doctor from Kaiser.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/5/2007 9:25 PM (GMT -7)   
Hello Debbie, I experience with Kaiser is not good. Your inlaws are going to have to request to be referred to a specialist. In fact they may have to demand it. This is an expensive disease as you well know so Kaiser isn't going to want to do everything that should be done because of the cost involved. But they do have the right to good heathcare so they need to be more knowledgeable as to what good healthcare is for this disease. Have your inlaws google it or better yet have them check out this forum. But the bottom line is that it is their decision and in the end you will have to respect that. Just let them know that there is plenty of education online to be had if her doctor isn't telling them much. Good Luck.........Pink Grandma

dededew
New Member


Date Joined Sep 2007
Total Posts : 8
   Posted 9/6/2007 12:36 PM (GMT -7)   

Thank you pink grandma, sorry for all the mistakes in my last post. I was really tired and didn't proof it at all. After reading what I wrote I realized that I made it sound like they don't want to believe me.
Sorry that is not the case, what I ment to say is that they can't believe that doctors aren't worried more if she really is that bad. They are scared and don't know what is going on. I have printed out everything you have said and gave it to them. I do know just how they feel because I didn't know anything at all 3 years ago and did just as you suggested and looked it all up on the computer when it was my brother. However for them they don't even know how to turn on the computer so I have told them them I would help them in anyway I can and also that they could use my computer anytime to do research or whatever and I would show them how. When I told Dennis my brother in law that you said to demand a specialist he said that that is exacally what he will do on Monday at her next appointment. Again guidence from people like you makes the difference between life and death when it comes to doctors like some of them are now. God Bless you for your help.

Well I guess that's it for now. I have to run and meet with hospice for my best friend Shannon, she has myotonic dystrophy and just pulled through another stay at Providence. They are moving her back to the foster home today and we are going though a lot of stress trying to decided what quailty of life means right now. She has a tracke and now a feeding tube as well as a pace maker. None of which she asked for. She didn't have a DNR in file before, now I have agreed to be her health care rep so we have filled out a Advance directive. Life sure is full of heartacke. I just keep praying that the lord will have me do and say the right things. I'm not sure if she is ready for hospice yet, I don't think shes had enough time to really think things out yet.

 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/7/2007 8:36 PM (GMT -7)   
Boy Debbie you have a lot on your plate with your sister-inlaw and friend. Remember to take a little time for yourself so that you don't get sick. Hope everything goes well on both fronts. Take care. Pink Grandma
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