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Elevated ammonia levels
I want to know what number is considered a high ammonia level. I just had a test done and l was told my number was 59. The nurse called and said ammonia levels were elevated. I had the test done because when l went shopping l couldn't walk and l was so dizzy. I try to pretend everything was ok because l get so embarrassed when l fall. Then when l got out the store l.had a hard time walking so l didn't want to drive right away so l waited and then l drove home. When l got home l had a hard time walking to the house but if l fell at home it would be ok. No one would be looking. I hurried up to get something to eat and drink but l didn't think l was dehydrated because before l left l had ate and drank. Then l went to sleep which always happen when l get like that. When l told the doctor that is when l asked to have my ammonia levels checked since a hepatologist doctor told me to discontinue my lactulose now my doctor has put me back on it. And now my upper stomach under my rib cage is hurting, l feel like l am going to threw up and my upper and lower stomach is swollen so l just want to know if anyone had that problem and if it means your levels are high. I just started back on my lactulose. So if anyone had or have that problem will you please tell me your experience.
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@kanaazpereira I don't know much about the use of lactulose. It came up for discussion with my son's doctor in January for prevention of hepatic encephalopathy. My son who has PSC has not presented with HE symptoms. His doctor brought up lactulose as a possible treatment down the road in the event he should begin to have HE episodes. I would be very interested to hear what the others have to say about it's use & side effects.
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2 Reactions@chrissey My cirrhosis was caused by NASH -- nonalcoholic steatohepatitis, which happens if fatty liver is not treated. With the diet in our country, this is getting more and more common and has not generally been tested for. I know that it is advised now that if a person has any risk factors -- overweight, diabetes -- they do testing. As it was, by the time I was diagnosed my hepatologist said I probably had cirrhosis for 10 years. Its symptoms start out vague.
I did take xifaxan and did hit the donut hole. When the hepatologist first put me on it I thought I would just take it on months when I really had to be OK, for instance when we might be vacationing or something, but my husband wanted me on it all the time. It was worth the sacrifice, it kept the HE episodes away for about 10 months. When I finally had an episode again I had to add lactulose back into the mix.
I had a liver transplant in September 2016. Hallelujah! When I was hurting in the hospital my husband would joyously remind me
"no more lactulose!" I hated that stuff.
So does your husband have cirrhosis, and is he a transplant candidate?
@stella25 As I mentioned above, it does work, but not nearly as well as xifaxan. I am not familiar with the newer drug that chrissey mentioned. Lactulose makes most people a bit nauseated for a while after taking it, but it helps if you take it in some juice, like cranberry, or soda water which was what I used.
Please feel free to ask me anything else about it... been there.
JK
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1 ReactionThank you @contentandwell. I remember you posting not long ago about your extreme dislike of lactulose:-( I'm glad you mentioned xifaxan. That was the other medication my son's doctor told us about. She did say that would be her first choice to treat HE if needed. Congratulations on a successful liver transplant! My son is stage 4 cirrhosis. He completed his evaluation for transplant a little over a week ago. Not sure if & when he'll be put on the list as is the case with PSC patients his MELD fluctuates.
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1 Reaction@stella1 It must be a huge relief to you and to him that he is now a candidate for transplant. What is his MELD now? I think when they put me on the list I was at 18. I was at 11 when I first went to the hepatologist but it quickly went up. I was on the list for about 16 months, maybe a little less.
My hospital is in Region 1 and I was told right up-front that other regions may be able to offer a transplant at a lower MELD. I was ready to list at Mayo, I had spoken to them and they felt they would be transplanting me at MELD 28, but my hospital (Massachusetts General) came through when I was at 28. At that time they were usually transplanting at MELDs in the low 30s. I think being blood type B helped.
I sincerely hope your son never has to deal with HE. Not everyone does. Even though I went a long time without an episode, I woke up every morning praying that I would get through the day without one. It was actually HE episodes that caused my doctors to diagnose cirrhosis. It took them almost a year and a half, but they weren't putting all my symptoms together very well. I know now to not stick around here with no diagnosis, to head right to Boston. What led your son's doctor to diagnose cirrhosis? It sounds as if he was pretty lucky for it to have been diagnosed.
JK
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1 Reaction@contentandwell My son was diagnosed with Primary Sclerosing Cholangitis a little over a year ago. At the time they did MRCP, ultrasound, fibroscan, etc. which indicated he was stage 4 cirrhosis. They removed his gb last October and did a liver biopsy at the same time. Biopsy confirmed the stage 4 diagnosis. He decompensated shortly after the cholecystectomy. During the holidays he was in the hospital twice. He had a blocked bile duct and an infection. At the time his MELD was 34. After 2 ERCPs and a couple rounds of antibiotics he stabilized. His MELD right now is 17. He'll be transplanted at the University of Utah. He's blood type A so a little bit of a disadvantage. His weight was down quite a bit. The transplant team has him eating frequently throughout the day to gain weight which he has put on about 18 pounds in the past month. Plus they want him taking in 100 grams of protein a day. Believer it or not, it's not that easy. I'm sorry you had to go through the HE episodes. Must have been extremely scary for you & your family. Hopefully we don't have to face those. Thank you for sharing your story. I'm sure I will have more questions for you as we continue our journey. I wish you blessings and continued good health:-)
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1 Reaction@stella25 Thanks for your good wishes, I am doing very well now.
I was under the impression that blood type A was also an advantage. I thought any blood types other than O tend to get transplanted more quickly than O because O can go to anyone, whereas the other blood types have to go to a person with the same blood type
In those 100 grams of protein, do they make a distinction between plant protein and meat protein?
I hope your son will continue to manage his condition well and that when it does go downhill he will quickly get the magical call.
I will be thinking of him, please keep us up to date.
JK
Please help. My husband in Oct was found at the side of the road not knowing who or where he was. His ammonia level was 176. He has been on lactose since then waiting to get into a liver Dr at KU. He said that he does not have liver disease. Today I took him off his lactose per the liver dr. at KU. He feels a little nauseated and weak. Dr. said a channel could have formed in his body to go past the liver. The test that he looked at was from Oct. Does your body form channels in a short period of time?
TKA
@jk
I am very glad that you got a liver transplant. My husband was told that he was not moble enough and was rejected. Don't know what to do now. His ammonia runs high even with the lactulose and rifaxan. I guess they just want him to die.
@chrissey Chrissey, that is so disheartening. I am so sorry for you and your husband. Have you tried going to a different transplant center? Rules can vary with different centers. When I was first diagnosed and became a transplant candidate the hospital I was using told me I might want to dual list because other regions could probably transplant me sooner. In investigating that I discovered that some had age restrictions, and some had BMI restrictions. My BMI was over 30 and some centers would not transplant patients with that BMI so I lost weight. My center did not have that restriction but I did not want that to be a problem if I needed to get a transplant from a center where it was a restriction.
I would definitely look into other centers. There is a great database of transplant centers that you could use to find transplant centers that are closest to you, and which have had good results. It's SRTR.org -- The Scientific Registry of Transplant Recipients. There is also a business that helps people looking for transplant centers. They post a lot on Facebook for free but I presume they must charge for individual consultation. It's Compare Transplant Centers.
I hope you can find a solution to this. How old is your husband?
JK