I can somewhat relate to as what you are going through. My boyfriend Steve was dx almost a year ago now with end stage liver disease (Cirrhosis). His too was caused from drinking for so many years. We have been somewhat lucky though as far as his mental state goes. He has really only had one bad episode that lasted about 2days. He gets confused on things but hasn't had any really bad episodes yet....... He takes 60cc of lactulose about 5 times a day and is on 300mg of aldactone and 240mg of lasix a day. We also have problems with his weight gain. Since April of 05 the first time he gained like 60lbs and lost 30 and now it just keeps fluctuating between 235 and 250. He usually weighs around 210 normally. Steve is also on a sodium restriction of 2000mg. They did have him on a fluid restriction but took him off. He hasn't had to have any fluid drawn off of him yet. His doctor wants to hold off a long as possible due to the fact they say it increases your chance of infections. So the only way they will draw fluid off of Steve is if he starts running a fever and they think the fluid maybe infected... I only work about 2days a week now but I am having to change my schedule and do just a few hrs a day here and there. KU called friday and they are wanting to list Steve on the transplant list as soon as he gets either cleared from his dentist or we make a trip to Kansas City and see their dentist. We are going to call his coordinator Thurs to find out what we need to do.... I am sure that down the road I will have to probably either quit my job or take a leave of absence for awhile if he starts getting really bad. There are days his liver pain is so severe he can barely get out of bed... I had never been on a chatting website or anything until Steve got sick and I started looking up information about his disease and the expectations of it. Then I ran across this website and it has been very helpful in information and in support.... This website is truly a blessing.....I hope things go well for you and your husband and everyone is here for you whenever you need us....
Hello Frightened and Lerie,
You both have been so helpful and it does make me feel better to know I am not alone anymore. We are having a better day. He will be having a paracentesis done tomorrow, so he can move around better. The doctors have him on antibiotic's once a week to prevent infection. There is no choice about paracentesis, it accumulatives fast and has caused a hernia, it will also go into the scrotum. At the beginning of December he weighed 212lbs, he now weighs 174 lbs., his normal weight is around 170. They usually take off more than 6-7 liters at a time. It is very evident he has lose a lot of weight, that he did'nt need to lose. His muscle mass is alot smaller, around the waist he is 46-47 inches. I just pray that we can get on the transplant list, we have done the medical testing and now it is the consultations with the rest of the transplant team. It makes me nervous!!! I just don't understand how this happened after years of not drinking and suddenly WHAM. I have to go now, am needed by my son (homework). Bless You Both, and I will be Praying for You. HUGS
Post Edited (lerie) : 1/24/2006 10:35:50 PM (GMT-7)
how are you doing? Steve is hanging in there we are awaiting a phone call from the coordinator to see about him being on the list. Rebecca called friday and wanted the number to the dentist that Steve is seeing he told her the situation about him wanting to take his time.. She is going to call him and then is suppose to get back with us...I guess she told Steve that if he doesn't do it any quicker that we may have to go to KU and have it done so that he can be cleared and listed. I hope all is well and I'm really glad I found people to talk to.
Hi frightened and Lerie,
It looks like they are going to do the paracentesis on Friday. It will give him some relief for a short time. I will be praying for you Lerie as I know you will be having your ultra sound on that day also and hope the news is not bad. I hope I will have his test results back to calculate his MELD score on Friday. I will try the gold bond out, his skin itch's also. He has the red spider blotches on him also and they have been increasing, mostly on his back and chest, the palms of his hands are also cherry red. His lower legs do have the leathery gray appearance. He was up bright and early today, pretty alert, just tires so quickly. I wish we were closer to being on the list for transplant. Does Medicaid pay for it and the anti-rejection drugs? I have insurance, but fear that the insurance company will try to get out of it. I may have to apply for Medicaid. We have not met with the financial coordinator yet. Hope you are having a good day with Steve, Frightened. I hope your day goes well Lerie. Bless You, My Prayers are with you!!!HUGS
Thanks for the medicaid info. Edema in the feet and legs can be sign of Liver failure. The edema can also be a sign of other diseases. It is wise that you got an appointment quickly. A low sodium diet can not be found in any of the frozen meals I have seen they are usually over 1000mg. Lunch meat is also full of sodium. You do need a low sodium diet! Especially since you are retaining fluid. I use frozen and fresh vegetables, baked potatoes. I use a george foreman grill for the meats and season with lemon juice and no sodium spices. Lemon juice helps get rid of the salt craving. I have been told not to use the artificial salts, because of the potassium in it. Good Luck with your appointment. HUGS
Post Edited (TDT) : 1/25/2006 2:47:01 PM (GMT-7)
Steve is on Medicaid and the finacial coordinator told us that it will pay for everything. His little spider spots are on his chest and back mainly. He is starting to have them on his arms and face some. The gold bond that we use is especially for itching it's Gold Bond triple action relief for extra dry and itchy skin. Hopefully after friday your husband will feel better...All of this is just so new to us..it hasn't even been a year yet since he was dx and yet we have had so many changes in our lives and I know there is more to come...It just gets so overwhelming at times.Take Care
I am glad that someone is on our side for a change.... it gets so frustrating when you explain the situation to these professionals and then they give you the feeling that they don't really care and you have to watch your loved one suffer that much longer because someone wants to take their sweet time at doing their job... I pray that things will work out and Steve will beable to see KU's Dentist and get this over with... It took us a month and a half to find this dentist that we have now because nobody wanted to deal with the paperwork associated with medicaid.... and he wants to take his time so he can make more money instead of taking care of business as quickly as possible. I am so thankful that his coordinators Craig and Rachael are so caring and on our side.... I just get so frustrated at times.... Steve has had a really bad day today all he's done is complain about the pain I just wish there was something I could do... you can just see by the look in his eyes that it's almost as if he wishes he wasn't here at times... and we still have a long way to go and him to get alot worse... I'm just not sure how I am going to handle that...I do fairly well now but for him to just keep getting worse before things get better I'm so scared of.. How much worse??? I know nobody knows everyone is different that's what scares me... He's been having some bleeding in his bowels and his doctor said it was due to his hemmoroid and just part of the disease. Sometimes I wonder if they just don't know and like to put it off as part of the disease.....well enough of my whining.... talk to you later take care....
Hey out of curiosity has anyone heard from PN16? I was just wondering how her dad was and how things were going for her and her family??
Yes, you do deserve a second opinion. Yes, it is alot to go through. But look what you have already made it through! God is answering your prayers. I know you are a fighter, you have come through 4 of the coma's, I have seen my husband in one, they are scary especially for the ones that see it. My husband has no recall of what happened. It is Miracles that you and him lived through it! You deserve a chance!! Prayers and Hugs
It is so hard to see the one we love hurting, or looking into their eyes and you don't see them there. We go to the hospital when the pain is too great. I know the frustration also, we were given a appointment for April. But, with the last hospitalization he was transferred to MU in Memphis to be admitted and evaluated for a transplant. The doctors here did'nt think he could wait that long for the evaluation. Some way we will make it, we are strong women who love our men very much. We are holding things together, but you can't do it all by yourself, you have to pray and put it in GODs hands. Do something for you, give yourself some time out.You need it! I just went through lossing my mother, a year and a half ago. I was her caretaker, she had cancer, this situation is feeling the same way. I did have to take some time-out. Browse the stores, find a good book, have lunch with a friend. It was just a couple of hours but it helped. I know how frustrated you are, things are just not getting done quick enough. It just hurts and scares us to no end. I am going to put you on thesecondadam prayer list. I hope tomorrow is a better day for you and Steve. GOD BLESS YOU and HUGS!!!!