Hi Rainbeau- Your husband sounds a lot like mine. As they told me on one of our emergency room trips. "You are in for it"! And boy were they right. My husband was a workaholic. We are not rich but very comfortable. Have traveled all over the world! Right before he got sick we started building a second home on the coast to spend some quit time. I ended up making most of the decisions for the house from a lap top in a hospital room. Jerry has gone down hill very quickly. Much faster then the Dr.'s have ever seen. He's lost 75 lbs and walks around like an old man. He's 58 and looks 78. You never know when he is going to vomit. When it happens there is not much warning. He can't drive, can barely talk and has to have help dressing. We've been trying to get on a list at Vanderbilt. We're getting closer but its been a long really hard journey. Most hospitals won't even consider listing you unless you stop drinking for at least 6 months. My husband totally stopped the minute there was a mention of cerhossis. Your husband needs to stop drinking. If he doesn't he will die much faster and it won't be pretty. You are really in for it. I'm not sure how you will convince your husband to quit. he much decided for himself. Just read everything you can because from now on this disease will comsume your life. Trust me. If I can help in any way please let me know. I have only been at this for 10 months so I still have a lot to learn. One thing I know is I'm much tougher!! I will prey for you.
Rainbeau Man do I know what you mean. I was driving my husband to a Dr appt the other day and just out of the blue started to cry. I told him I miss him so much and I miss our life. We have just finished a second home and can't even enjoy it. He's much to sick. I know what Pink Grama means about spending so much time trying to get her husband listed. Thats about all we have done. Please don't give up. Get him to the Dr's and they might be able to make him feel better. Thats the only thing that keeps me going is HOPE. You just have to have some hope. My husband doesn't have diaheria problems he just vomits alot. Its a balancing act with amonia and electrolytes! You can do it. Trust me. It will give you more time. Is your husband still drinking? Get tough if you have to. Hang in there. You are much stronger then you think.
Hi Rainbeau Our good days are far and few between. I now cherish a few good hours. Jerry is eating less and less. He can no longer sit on a hard chair because he's so boney it hurts. It seems we have different appts almost every day. Two counseling appts twice a week. I get to go in with him and it helps me more then him. The counselor is just great and I get to vent. It makes me feel much better. That way I don't get on Jerry. I do take my bath every night and have my alone time in my den. Sometimes I watch TV or shop the internet for cute things for our beach house. None of it mean anything without Jerry. I'm getting used to our life the way it is but I long for the old one. I do have incredible memories to hold on to. I feel so selfish at times I just want to have him a little longer. We go back to Vanderbilt the 27th and hopefully find out if he can get listed. It was the Physiciatrist at Vanderbilts idea Jerry see a counselor here. The counselor here is helping a lot. He thinks that Jerry doesn't need any counseling but this woman on the team is insisting. Rainbeau are you considering trying to get him on a transplant. Have you talked to him about it. It sounds like he is giving up. Please don't let him do that. It is amazing what they can do now. Jerry had a Dr. tell him the other day they are actually taking cells from your body and growing new orgins. The liver is one of them. Isn't that incredible!!! Take care and enjoy every second. I know Pink Grandma would say that.
rainbeau, I am so sorry that you are going thru all this with your husband. i am relieved that he let you call the paramedics tho. A broken clavicle is horrendously painful. We are here for you and will keep you both in our prayers.
Rainbeau I know exactly what you mean about not wanting to answer qustions. Some times I'm on the phone for hourse answering questions. We have four children and then the friends. I know everyone means well and are all concerned but sometimes its so hard to tell the same story over and over. What I did for a while was tell one person and they had one person they had to call and so on. That happened alot when we were in the emergency room and hospital. I wanted to address the pain meds. The last time we were in the emergency room Jerry was complaining of severe pain in his back. That happens alot but I usually just rub his back for him. This time the Dr. gave him morphine. I was upset but the Dr. said it woudl hurt him. As it turned out they couldn't figure out what the pain was and he was getting worse. Three days they just kept injecting him with stronger and stronger pain meds. He started acting so strange. Finally after three nights with no sleep because he was thrashing about a nurse and I made the decision to take him off all pain meds. It was making him crazy. They never did determine what the pain was. So my point is I hope the few pain pills don't hurt your husband. I'm so sorry you had such a long night. I have had so many of them and it makes things so much hard to deal with when you are sleep deprived. WE have had a long two days. Today we saw the Dr. re his high amonia levels. He's so lathargic can hardly talk, falls a sleep in mid sentence. He's shaking so bad he can hardly eat. The Dr. today decided not to put him in the hospital because his head seems to be clear. He's put him on antibotics. I'm praying it works. Every time one of these episodes happens I think things can't get much worse but they do!!! Its hard to find 10 minutes of good in a day like this. I totally forgot about the eclipse. Jerry would have loved it. Sorry this has been so long. Keep us posted how you are. I am thinking of you.
Hi Rainbeau. I can't immagine how you can handle him being sick and still drinking. To have to deal with both would be so hard. Jerry started vomiting about 5:00 pm yesterday. Normally he vomits then he's fine for a day or so. This time it lasted an hour so I called Vanderbilt. I knew it was coming because they took his blood on Tuesday when they drained him and his ammonia was 98 which is high for him. Then on Wed the Dr. put him on a new antibotic. Anyway we came to the emergency room last night at 7:00. Blood work showed ammonia 119 signs of dehydration and possibly an infection. We got to a room at 12:00 AM. We are still here. Every time this happens he is a little sicker. He's still not been able to eat anything. They have him on IV. He's still vomiting some. I'm going on my third night with no sleep. He's lost about 75 lbs. We have an appt at Vanderbilt on th 27th. Hope they can get him better by then. He's just so weak!!! I just don't know how we can get any weight on him. The Dr. said his body is fighting so hard to do what the liver can't he's just burning up everything up. He has no muscle mass left. OH yes, and his blood count is low. They don't know what the problem is. The Dr. is talking about maybe doing another scope but he's had two. And to top it all off I'm sick. I had to call my Dr. this morning for an antibotic. Not sure if its viral or not. I just didn't want to take any chances. I have my lap top so let me know how you are doing. Hang in there. I wish there was something I could say to make you feel better. As Pink Grandma would say just charge those batteries and keep going.
June The way I understand TIPS is a procedure to get the fluid out. It sounds to me like a type of drain. The only problem with a TIPS is it really hard to control ammonia levels. The reason I ask for labs is when Jerry is in getting drained if I think his ammonia is high or he seems dehydrated (which he has a lot problem with) I call Vanderbilt and they suggest getting it done. They are 3 hrs from us. I don't know why Vanderbilt is so slow. Jerry had all those tests like you were talking about. Then the committee met and decided he was a good canidate for a transplant. BUT one member of the team the Physiciatrist decided Jerry needed counseling just in case he decided to start drinking some day!!! He quit drinking on his own before he got sick. I also think some of his liver problems are from years of tylenol and ibeprofun due to back problems. Also high cholesterol and taking Lepitor since he was in his 30's. The drinking did play a huge role. This physciatrist at Vandy seems to think because he quit on his own no one can really do that forever. I really beleive she has an agenda. She told us that her husband is an alchoholic! Also she only talked to us for about 20 minutes. I just don't believe you can know someone in 20 minutes. But in order to get listed we have to do what she says. The counselor Jerry has been seeing is totally convinced he is OK. He has a very strong mind and once he makes up his mind he usually means it. I totally understand they need to protect the organs. But you can't treat people all the same. Jerry's MELD score was an 18 in November. He is much worse now. I have no ideal what it is now. If someone could tell me the formula. Vandy did tell us the four things involved. I just don't have my notes with me. If I were to guess if Jerry was on the list now he would be at the top. He is type O blood which they said is good and bad. More people are type O but A and B can receive type O and people that are O can only receive O. There is a lot to learn. Excuse the typo's I've not had much sleep in the last three days!
Rainbeau I hope you are doing OK. Hang in there. I wish there was something I could do to help.