At the beging I lost 40 lbs in a few weeks. It seems to have leveled off for now but it's left me being cold all the time. Seems like I can never get warm enough. I had a bad day today. I slept for...
ML thanks for the info. It calmed me down. I was afraid it was going to keep on getting bigger. It's very uncomfortable and hurts a bit. I'm taking extra lactulose and double spironolactone. It's...
ADAAT-Good news I saw the Hepatologist today and she said the scabs are not uncommon in liver disease and they are nothing to worry about. They are caused by toxins and like acne some people get out...
Shands/Gainesville-Mon.-Pulmanory Dept.-Had to take Pulmanary test.Sat in a booth doing diffrent breathing test then went to see the Dr. He studied my records and results of test and said I had...
I go to the Pulmonologist at Shands/Gainesville tomarrow and Wed. I go back to the Liver center there. Stomach is still looking like I'm prego,appetite about nil but I try to force food...
I'm sorry to hear you're going thru all this. I have ESLD,varices, enlarged spleen and liver also. I have been getting the little scabs the last month but mine are on my ears,scalp,and now starting...
David and Connie-Thank you for your info and responses. I tried to show it to my local hep Dr. last week(I have 2-They are working together. One locally and the one at Shands/Gainesville. The Dr. at...
I'm not sure if this is important that's why I ask it here so all of you can help me understand what's going on with my body and if I should be worried or not. It seems like this happened out of...
I've been having severe joint pain, the knees are unbearable. Getting up and down is the worse but it's also attacking feet, ankles, shoulders,fingers lower back and hips. My knees now pop all the...
You're right there's something new everyday. Let me introduce myself. I'm Suzi,47, dx'd in 2004 Hypothyroidism,2004 MRSA, 2005 with sjogrens',2006 cirrhosis, and 2010 Pulmonary arterial disease.The...
Mr. X- Thanks for your comforting words. Sometimes I feel so alone with this then I come here and I know I'm not plus there are people worse off than myself. This forum has been a God sent. I can...
Connie You are always such a great source of wisdom,common sense,and information. I have another ? When taking lactulose will it flush your other meds out? is there a certain amount of time that...
Thanks Connie I'm scheduled to see my hepatology and Pulmonary Dr.'s in Gainesville next week. My memory is so bad that I've been writing ?'s down as I think of them so I won't forget. I have to do...
Thanks Connie With multi-diagnosis it's hard to figure out which symtoms go with which dx. Some symptoms can apply to all dx's. The confusion and talking as I'm coming out of sleep those seem to go...
Thanks Emma My original dx, 2 years ago, was cirrhosis but it progressed a lot in the last six months and now it's ESLD. What is DH? I see everyone using it. Is it the person your taking care of? My...
I've been trying to post this for about 4 days. It's been written in my head but it keeps getting jumbled up,I couldn't get my thoughts together to make sense and I couldn't get from head to post. It...
Mr.X-Thank you for bring this up as it has been on my mind. I have MRSA and am so afraid of transmitting it to anyone else because it is a hard to detect/diagnosis and people die within 72 hours if...
Thanks Connie-I think the GI doc might have over looked the fact that I'm on spironolactone and he added potassium supplement. Is this going to be a problem?...
GI doc put me on potassium supplement because in the hospital it was real low and they said it could cause a stroke or heart attack if your potassium is too low. What happens if your potassium is too...
Why do you all say Lactulose is a horrible med to take? Mine is like drinking thick sugar syrup. At the hospital they had orange flavor too. I don't understand people refusing to take it. The only...
Connie-thank you for the info. I'm going to try it this week. I must have a brain fog duh-vegaterian recipes /community/emoticons/shocked.gif I don't no why I didn't think of that. I will be looking...
I don't have ascites and they were going to do TIPS but after evaluation my liver was not a good candidate. I have too much damage to my liver they said. What did you find out about the growth?...
What is quinoa? and where would I find it? John's making Red beans and rice tonight I just have to pick the meat out it. I haven't had it in a long time but we've been trying to come up with diffrent...
Thanks for the tips. Connie when he said no animal protein I thought that meant fish too? We like to eat fresh fish (advantage of living in FL. /community/emoticons/wink.gif When referring to beans...
I was told that no matter what I had to take the lactulose otherwise ammonia builds up then it's back to the hospital,even with the explosive diarrhea that comes with it sometimes and I need at least...
My Dr. is telling me I need more protein but not animal protein. I've become a vegetarian. I eat a lot of fruit,I also eat vegetables I think green ones have more protein in them,beans and I...
Thank you Connie. I appreciate the info. How do you know so much? Your post have helped me a lot....
I hope the questions I ask are not stupid. I'm trying to learn as much as I can but all I can talk about is what I have experienced in my own treatment. Connie you are so knowledgeable on the subject...
I'm sorry to hear your Dad is getting worse. I'm having what John(husband/caregiver) calls a good day. I never knew that I was doing stuff like your Dad until he told me on a "good" day. I guess my...
Charlie92 I was told never to use electric blankets. I'm not sure why. Dr. had a real problem when I said I using electric blankets. Wish I could give the reason why. Hopefully someone else will...
I was dx'd 5 years ago but didn't have any symptoms until 6 months ago. When they came on they came hard and fast everything at once. Constipation-lactulose does wonders and works quickly. The ear...
I went thru the not eating phase also. First it easy because I was on a liquid diet (alcohol) then when I quit drinking my stomach was nauseated all the time. Just looking at food made me want to...
Puzzledbyitall I'm not sure if it's hereditory or not. In all my readings I never came across that. I know other auto-immune diseases are hereditory like psorisis. What is physio? It is a disability,...
I don't post very often but I'm here every day learning and to see how everyone's doing but this hit a cord with me. I have been very cold for last couple of years even before I was dx'd. Even in the...
Thanks Connie. I spelt it wrong and just corrected it(oops!) My Dr. called the rep. and tried to get coupons or any kind of help for the cost and they wouldn't help. My Dr. is going to give me...
I was just put on this new med. Xifaxan. It is only for HE. Has anyone else heard of it or used it? It suppose to clear the brain of toxins. It's very expensive (1,400/month) and does not come in...
I too am all of the above. At my last GI visit the Dr. put me on this new medicine Xifaxan it is strickly for HE. It clears the brain of toxins plus I take lactolose. I'm still trying to find out...
S.S is a moisture seeking disease that's why you get dry eyes,skin,mouth,nose and ears. I started suffering heavy nose bleeds 3-4 times a day. I went to an ENT and he gave a saline rinse followed by...
SD, I also have ESLD and was put on O2 24/7 this week. I went to Shands/Gainesville for a consultation to see if they would evaluate me for a liver transplant. One of the test they did was a blood...
My PCP finally got me a new liver Dr. not under the Shands umbrella. I hadn't had a liver Dr. in 2 months (since Mayo had turned me down for a transplant). I brought him all my records from Mayo and...
Hep93- thanks for the website. It said my meld score is 11. Is it common for it to drop a few points? I was originally under Shands care. All my Dr. were/are working for Shands and I liked that...
Connie-I'm glad you had such a good turn out at Mayo. I really had my hopes up when they set up an evaluation. I've read thru each Dr. evaluations and they all said "Good Candidate for transplant" It...
I started reading this forum back in 2008 when I had my first liver failure.( I quit drinking and taking anything with Tylenol in it that same day) I went to get up from the couch and my legs went...