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
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.