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Posted 7/13/2009 12:39 PM (GMT 0)
 Hi from Moonroe, I am very concerned about my husbands energy levels. He seems to be getting  weaker every day.He barely has the energy to get up off the couch. The shaking has become so bad some days he can barely eat. He can not shave or fix his teeth so I have to do it for him.I feel like his doctors are just ignoring all of this. He has an appt Wed with GI doc.I guess I am just going to have to get mad to get some results and answers.When the doctor asks him how is doing,he always says fine.Well,he is not.I want to know why nobody is doing anything.His ascites is getting worse ,He had 5ltrs drawn off last Friday and it already looks like it has filled up again. He only weighs 125 lbs.How much more weight can he loose before they do something.This is so frustrating.I look at him and I want to cry.We try to stay positive about all of this,but it is getting very difficult when nobody is doing anything.What are they all waiting for? I am so sorry for venting this morning but I have had enough of all of this.  What do I need to do to get results from the doctors. I have a question for Rick.How did you find the energy to do projects and chores? I have mentioned little things he could be doing,but he just doesn't have the energy.What can I do to help him.I have tried to get him out of the house but he doesn't like anyone seeing him like this . Also has anyone had a problem with drooling. I know that sounds weird but it has gotten really bad and embarrasing for him.If anyone has answers for me I would really appreciate it. I am so sorry for jumping all over the place but I am so frustrated this morning.Thanks to anyone who has anwers.Moonroe                                                                                                                                                                             

Post Edited (moonroe) : 7/13/2009 6:56:30 AM (GMT-6)

Posted 7/13/2009 3:10 PM (GMT 0)
Hi Moonroe,
I'm so sorry you have to deal with this terrible disease. I know how you feel about doctors seeming to take too long to get anyhting done. Do you go into the exam room with your husband? That's what I do and when my husband neglects to mention something or gives a less than truthful answer I jump in and tell it like it really is. I write down everything that is going on with him between appointments. His doctor has gotten to where he asks me how things are instead of my husband.
You must be a diligent advocate for your husband. I'm sorry that sounds so trite but it's true. I remember getting so frustrated I told his liver doctor to "cook or get out of the kitchen" hehe He took me at my word and things really got going.
You'll be in our prayers.
Posted 7/13/2009 3:28 PM (GMT 0)
Hey sugarbear, Yes I do go in with him at every appt. and yes the doctor does ask me questions because my husband just doesn't say much.Sometimes I think they are not listening or they just don't care. I really think I am going to have to get mad before something gets done.I just want to be told the truth ,good or bad so I know what steps to take. Thanks Moonroe
Posted 7/13/2009 4:10 PM (GMT 0)
Hi Moonroe,
I am so sorry you have to deal with this disease. As sugarbear said, you have to go with him to the doctors Office.
I lost my dad because of this horrible disease. it is like a rolercoaster. I think we all have the same story, Dealing with doctors and our loved one.
Just educate yourself with this disease and when ever you go to doctor, you asked what to do, here you can find a lot usefull information, Hep93 and pinkgrandma they really can help you here.
as his energy level, ask his doctor about Ensure and other stuff. I gave all these stuff to my dad, I know that they can not eat much.
You are all in my prayers.

Post Edited By Moderator (hep93) : 7/13/2009 11:20:15 AM (GMT-6)

Posted 7/13/2009 5:29 PM (GMT 0)

Moonroe, I'm sorry that things are not going well.  You have received some good suggestions here.  The truth of the matter is that there really isn't much that the doctors can do, short of transplant.  Dietary supplements are a good idea.  You might ask about a medication to increase his appetite.  There is such a thing.  Does he like fruit?  See if you can get him to eat fresh fruit.  If nothing else, milkshakes or smoothies work.  Anything that will get some calories into him.

Why is it that he is seeing a GI doc and not a hepatologist?  Is he being seen at the transplant center yet?  What is his Meld score or do you know it?  I know he can't be considered for transplant until he gets those 6 mos. of counseling done, but let's hope that he makes it and can get listed.

I know that I drool when I sleep, ever since getting dentures.  I've heard that it's fairly common.

I hope that others here will be able to offer you even more suggestions.

Remember to take care of YOU.

Hugs,

Connie

Posted 7/14/2009 11:09 AM (GMT 0)
Thank you Rick for the advice.I think you are right about being idle.If he could just get started on something I think he would feel better about himself.Your wife sounds like a great person who loves you dearly. That is how I feel.I would do anything for him. I am definetly getting in touch with Hyashi. Maybe I can get the ball rolling a little sooner.Thanks again. Mimi[moonroe]
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