he's my world, and he is fading fast...

Butterfly Three-I have tried and tried to figure out this disease.  Every time I think I have read enough to understand it something happens that makes absolutely no sense.  I give Jerry the lactalose just like he is suppose to and he's pooping like he should and all of a sudden his ammonia level goes up.  I even wake him up to give it to him.  Now I have learned that an infection can cause it also he became dehydrated.  I'm not sure why probably because he vomits off and on.  Crazy isn't it.  Jerry has not had any swelling in his feet yet.  It all goes to his belly.  He's getting drained about once a week.  Vandy is not going to be happy about that but maybe they should quit concentrating on counseling and start with the more important things.  He was able to eat some today so that is some good news.  Hopefully we will get out of here to make it to Vanderbilt on Wed.  Now I don't know what will happen because he was in the hospital he missed one of his counseling sessions!!!  He had to walk out of an AA meeting last week to vomit.  So I'm sure that is going to make a difference weather or not he will be listed!  Crazy isn't it.  We just have to keep truckin!!!  Thanks for your thoughts and prayers.  Mine are with you also.

Hang in there  JoAnn

Hi Rainbeau.  How long was your flight.  Even though we have flown all over the world I can't immagine taking Jerry on a plane right now anywhere.  We have had a long day.  Up at 6:00 am drove through a blizzard for three hours to Nashville.  It was beautiful but a little stressfull.  Spend alot of time with Dr. Porayko (Richard Dryfus)!  He enlightened us with lots of info.  I will have to fill you in later.  There is so much I really need to talk instead of type!!!!  Jerry is already in bed and I'm ready to go.  Basically the way he explained it Jerry's body is eating itself.  Doesn't that make a nice picture in your mind!!!  This Dr. is very up on good nutrician.  He's kind of made it his mission because he believes it very important.  I happen to agree its just so much to learn.  To make a long story short he wasn't happy with the couselors letter he sent.  He basically thinks its worthless.  That he really didn't say anything.  He right he didn't he just told that Jerry has been couseled in everything Karen requested!!!  Its hard to say anything when you don't think he needs the counseling!!!!  There is a lot more but the committee met after we left and Karen emailed me and said we need to come back to talk to her.  Wait until you hear the rest I feel like such a low life.  Jerry wants to go to our new second home he hasn't even had a chance to see.  So I think next week we might try and go spend some time at the beach.  He won't be able to walk it but its calming there just watching the deer walk around.  That is if we don't have to go to Vanderbilt again.  If we do we do!!!  Hope you all are doing good.  When I've had some sleep I want to share with all of you what I learned about the protein thing.  Very interesting!!!  Be safe and hope everyone has had a gooood day.

JoAnn

Maggie  I know exactly what you mean about your husband and the control.  Jerry's business is now quit so large but he still mantains some control.  He has his sons there running it.  Well, they are suppose to but I think his secy does most of it when Jerry can't.  The boys are so spoiled they just pretty much do what they want and then collect a big fat pay check.  I'm trying to get Jerry to deal with that in Counseling!!!  I think it would be hard to loose control of everything.  I'm not just talking about the business but what he eat, drinks everything.  Jerry never complains but I know it bothers him.  He's not drinking any longer and now not in the fog he was in while drinking (unless the ammonia is high).  He sees things much clearer now.  I really think he is dealing with a lot of guild for all the years drinking.  I could be wrong.  Hopefully the counselor can get into his head.  We are going back to Vanderbilt on Monday for another meeting with the Physiciatrist in charge.  I had a long talk with her on the phone last night.  I just get so tired sometimes.  I told her some days I think I'm just going to give up but I just can't.  We did learn a lot more about MELD among other things at Vandy on Wed.  Every Dr. Jerry has seen has had a totally different opinion on things.  I finally decided I have to just listen to the liver Dr.  I had him on Whey protein  for a while then changed to Soy.  The Dr. at Vandy say ANY protein.  If his ammonia starts to rise just give him more Lactalose.  His body is just wasting  away and he needs the protein.  So here we go again.  Also I did learn they are now factoring in Sodium in to the MELD.  This can help alot.  Also the fact that Jerry has O type blood I was concerned it would make it harder for him to get to the top of the list but now  I  think I understand it better.  IF there is an A or B ahead of him they can give them a liver from an O donor but they won't unless they are really ill!!  That made me feel some what better.  I know I'm ahead of you here but if you learn this now you won't have as much to deal with later down the road.  Hang in there girl. It sounds like Mr wonderful is scared.  I think its just so scarey for them to give up the alcohol.  If I could send a picture of my husband the way he was and how  he looks now I would.  It probably wouldn't mean anything to your hubby not knowing mine.  Our friends have walked right past him and didn't even know it was him.  Does you husband have any hobbies?  Jerry doesn't to speak of except he used to play golf way back before he  started working  7 days a week. I think once he feels better he might enjoy getting back into it.  We joke about how good he might play now that he's sober.  Who knows. I might do it with him.  WE are going to try and go to our new second home.  He worked so hard for this and hasn't even been able to see it.  Shelly I'm interested in that book.  I may run to the book store and get a copy.  Hope everyone has a good week end. Maggie get lots of rest.  I have found it really helps me. 

Be safe

JoAnn 

rainbeau, I am glad that you ordered the book and I am anxious to see how you feel after you read it. The goal of the book is to do a self transformation. Any help that comes to your husband (thru the book) will be the changes in you. I did a lot of self reflection as I read thru it and had to come to terms with why I did what I did or responded to something said or done to me. It was the biggest eye opener of my life. I just hope and pray that it is as effective for you and the others that ordered it. BTW I think being honest with myself was probably the most difficult thing I had to overcome. I knew I couldn't complete any real change until I was willing to admit to myself that I needed to change.

 Shelly

Chille  I do have an ER bag ready.  I got so tired of packing then unpacking.  I just keep some comfy strech pants to sleep in clean underwear and I'm off.  We don't go as much now as we did last summer.  I was home one week in the hospital one week.  At first I felt better in the hospital because I would get so scared I didn't want to be home alone with him.  Now every time we go I don't think I could sleep another night in one of those chairs.  But I just keep doing it.  After a while I think I didn't panic as quickly.  All of the ER Dr. know me.  The time Jerry wore my bathrope to the ER was the worse!!!  Just hang in there.  We are all her for you.

joAnn