Signs of end stage of liver cirrhosis?

Mailman, I am really glad you found us. We are always here ready to help whenever you need us. I know that coming here has really helped me. My husband was diagnosed with hep C in 1994 and was diagnosed with advanced cirrhosis in July of 2006. After the diagnosis it really helped explain a lot of things to me. He had not been himself for about a year or so before. His meld score has remained at 10. He takes 80mgs of Lasix, another medication for portal hypertension, and one for ulcers. He is also taking Lactulose to help keep his ammonia level down. Lately even though he is taking Lactulose his mental awareness is not really all there, and he has been complaining about his legs hurting all the time. One of his knees was swollen for a couple days. The swelling has gone down but he still complains of pain there. He has fallen twice in the past two days, which really concerns me.

I will pray that you receive your liver transplant and be on the road to recovery really soon. I have one grandson myself and can only imagine how hard it would be not to feel well enough to play with him. Children bring so much joy in your life.

I wish you a Happy and Healthy New Year also. My thoughts and prayers are with you.

As for natural remedies I take milkthistle,grapeseed extract (antioxident) and L-Ornathing. I am at end stage liver disease and am only allowed to take my BP medications . So the supplements are actually a no no, I am in constant pain due to my arthritis but can nolonger take pain meds of any time. My ammonia level was around 189 last decemvber before I was diagnosed.. Due to my vigilance on taking my lactulose . This december it was <14 although I still have brain fog at some times. No major swell yet. Just the amonia problem and the itching has begun. Don't have any real symjptoms at this time. Just reading through the forun for symptoms to look for. June

I agree with Gil F. most likely amonia levels & kidney problems.

Lots of folks with liver disease actually die of kidney failure if they can not get a transplant.

 Hi, just thought I would let you know that your dad has to sign papers that are called Health Care Surrogacy. This paper is a legal document that states he is assigning someone (Usually the spouse) to make medical decisions if the patient (your dad) is unable to make them. It also allows the medical staff to release information to the surrogate. Because of Hippa Laws the medical staff CAN NOT release info without permission from the patient. It seems complicated but it really isn't. If your mom is surrogate she can authorize the staff to give you info. That way the hospital, Dr's and nurses are not breaking any federal privacy laws. The problem arises when we don't have a health care surrogate before something happens as in your case. Your mom can speak with the Social Worker at the hospital to get counsel on how to proceed. Does your dad have a Living Will? Everyone should have these 2 documents regardless of age or medical history. It prevents the issues you are now facing. Please keep in mind that the staff wants to be able to tell you everything thats going on but they are prohibited by law.

Shelly

 

   Mailman : It seems to me you have started on the right track by using the forum ,for help. It has certainly helped me since I think every one in my family is tired of hearing how I feel .  Which at this point is not to bad, just a little water retention , I take sparolactone for that. Seems to be working. Have lost some sodium though. Someone on a forum told me the itching is from high bilirubin. My bilirubin was down 3 weeks ago.I guess I have minimal itching haven't made myself bleed.I am itching right now and getting hives. Trying not to think about it. They were afraid I'd bleed when they did the bipopsy since my platelets were quite low . They have climbed a bit but are still low. Also the protime has something to do with blood clotting. I have cut my finger twice with a sharp knife while cooking and hardy bled. As far as brusing I have less brusing than I'v ever had in my life. Have managed to keep my weight the same. Dr. told me not to lose any weight. It's hard to keep weight at a constant level when your limited to certain foods. How about amonia levels? Mine were extremely high now they are below normal. Of course I have to be certain I take enough lactulose or I get encephlopathy . My husband reminds me to take the lactulose if I start doing weird things. I was placed on the list last month My MELD score is 9 it went down from 10. So they had to start me off on 9. My biopsy says I am at end stage. But I'm told I won't get a transplant unless my MELD score really climbes up. Or I suddenly get very ill . Kind of ironic that they waite till your in such bad shape.

    You seem to be ahead of me in the game of life. So I may have to ask you the questions.

     I also have  2 grandchildren like you and  pinkgrandma. The 6 year old is in school so we only see her during vacations, spring break , or snow days. Her 3 year old  brother is with us everyday. I do get extremly tired but I keeps me going and takes my mind of of this raw deal. Anyway keep in touch . Hopefully we wont get to the stage where we have to get drained. (I'm allready draaind mentally as it is ) june 

Post Edited (june17) : 1/7/2008 3:24:27 AM (GMT-7)

Hi June and Mailman,

My husband's MELD score is 10, and we were told he wouldn't even be worked up for the transplant list until it reached 15. I agree with you that it is ironic that you have to wait until you are really sick before you receive that transplant. It can be very frustrating.

I have a grandson that is 7 months old. I usually see him about once a week. He has already brought me so much happiness in these past 7 months. My daughter is also expecting. We think probably in September sometime. I am so excited. You are right, children are a blessing from God. That is exactally what I told my daughter when she told me she was pregnant. It was not planned, and she is a little afraid but also happy.

I hope you both are doing well.

Thanks to all who have answered my posts. I feel incredibly welcome and comfortable here. I just received a copy of my latest bloodwork done 12/28 07. However, I do not see any result for ammonia levels. Can anyone tell me how it is worded or abreviated. My bilirubin, glucose, AST, tumor marker, and pro-time are all high. My calcium, Albumin, and albumin/globulin ratio are all low. Everything else is in the reference range. Thanks! Delivered by the mailman.

Mailman, I had the same trouble with my husbands labs. Let me know what you find out.

June, I go to Mayo Clinic Jacksonville. They are simply wonderful. It's all about the patient there, from the greeters/helpers at the door to the most esteemed surgeons. After what I had endured for years at Shands Jacksonville, it was like stepping into a different world. And they do have the shortest transplant wait time of any other facility in the U.S.

Good luck!
Connie

Hadnt finished. I promply got all of the papers saying what each Dr. had noted. Which is really somethin. Most Dr. don't share their remarks with patients. Jacksonvill would have been my first choice, but I would have had to fly every time. With Arizona we can fly if it's an emergency or I'm really tired. Otherwise we can drive. Well enough said. Have a good day since it is already here 3:00am . Anyone have a solution for insomnia? june

Hello to all. Just to let you know I received an offer of a donor liver at 1:40 am today. Donor was 51 and had a stroke. He also had a hepatic liver (extent onknown) and a medical history of diabetes which caused him to lose a leg, high blood pressure and renal failure which caused his kidneys to fail. All this combined made this a high risk liver. It was offered because I was told that I am in the top 5 in my area for transplantation, and will likely move up on the 16th when my MELD score increases. Given all this, along with consulting with my wife and praying as to what to do, I DECLINED. Still do not know if I made the right choice but I had to make a decision in about 10 minutes. Do you think I made the right choice? Very confused. Delivered by the mailman.

Hi Mailman, I think you made the choice that was right for you. I'm not sure that I would feel comfortable with my husband taking a high risk liver either. I will keep you in my prayers.

Medwife, The MELD score is a combination of counts from your blood work which determine where you are placed on the liver transplant list It goes as high as 40 with 40 being the most critical. To learn more, go to google and do a search on meld score. Hope I have been of some help. Keeping all in prayer. Delivered by the mailman.