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10/13/2011 09:41 PM

Ammonia Level

rpooo
rpooo  
Posts: 103
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My last blood test revealed my ammonia level at 90. I had a discussion with my Gastrologist and he asked me if I was drinking still? I was offened but answered quickly that I have not drank since my diagnosis.

03-23-10. I think I was insulted that he would think I have such a small reguard for my life. I think his concerns should be what else then could be causing my level to be so high.

I have taken further steps since to try and bring it down. Such as an even heathier diet. No red meats. Tread mill every morning. V8 juice once a day. Lactulose twice daily and Xifaxan 550mg 2x daily. B-complex and multi-vitamin. Oh yeah, I forgot to mention I have alcoholic cirr-hosis. ha ha Dizzy

Have I covered everything?

Since my doctor kind of surprised me there with his question I plan to have a chat with him about it. Am I wrong for feeling this way or do I just go ahead and help him understand who he is treating. Do not treat me like everyone else. We are all different!

Randy

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10/13/2011 10:52 PM
mpmom
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Randy,

I have mixed feeling about this. In one way I find it insulting. I have never drank , but you'd be surprised how many people ask. (including people that know me)

As a Dr he has to make certain he covers ALL possible causes. If he tries to find ways to help you I'd let it go.


10/14/2011 02:45 AM
kimmerz
kimmerz  
Posts: 441
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mpmom

I would have to agree with you on how many people ask you that question... and that is the first thing they say....I had to go to the er a couple of days ago they did a ct scan and found a spot on the liver and the first thing that came out of his mouth was how much do you drink and do you drink everyday I looked at him and replied excuse me dr. but number one I do not drink and yes I do have cirrhosis but everyone that has this condition does not drink so I would appreciate it if all of you would ask the right questions instead assumimg that everyone that has cirrhosis drinks then i said if you would look at the charts that u have you would know that it is caused by autoammune disease and not by drinking .... he didnt know what to say.... he walked out of the room then came back in a few minutes later and said I am so sorry I guess me as a professional should of asked why or how did u get it by assuming I am so sorry...then he said I just made myself look like a fool didnt I lol I said no but it just gets tiresome being the first thing that comes out the mouth before thinkin it could actually be caused by something else... so yes i do agree I will get off the subject as u can tell it gets to me too lol

have a great night all

Kim and sry for rambling lol


10/14/2011 04:00 AM
dmanflan
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Hey rpooo!

Even tho my cirrhosis was caused by ALD, given the amount of time that you have been clean, I would be somewhat offended by the question as well. However, I would also have a frank discussion with my doctor about where my mindset was at the current time. I, like you, was also doing everything that I could to stay as healthy as possible while enduring the trials and tribulations of ELD, waiting for an organ to become available while my MELD crept up. If I wasn't satisfied with the discussion, I would think about changing doctors. Luckily I didn't have to face this issue, but my mandatory (due to having ALD in the first place) appointments with my psychologist every two weeks certainly help me with my continuing recovery and kept my hep informed.

Hope this helps!

Dennis


10/14/2011 04:52 AM
rpooo
rpooo  
Posts: 103
Member

Thank you everyone for the advice! I'll just have to let it go. He has been taking really good care of me and he has a lot of experience. I can imagine this is something he has seen many times and since it was alcohol that got me in this mess it's understandable why he would question it. Still aggrevating though, Another concern I have is that to be considered for transplant you must not have drank for 6 months, but what if they think I did and how can I prove I don't?

Dennis I too am getting started with mandatory sessions with a psychologist. These appointments and seeing my neurologist I am hoping to be able to provide adequate proof of Hepatic Encephalopathy for disability. It would seem that a guy my age (39) isn't eligible with ESLD alone.


10/14/2011 05:47 AM
mikealpha1
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The transplant centers verify by random drug and alcohol testing.

10/14/2011 06:52 AM
dachsiefan
dachsiefan  
Posts: 595
Senior Member

I get t he alcohol question or infectious hepatitis question all the time from uninformed medical professionals. I was never a drinker, did not do drugs, and did not have a blood transfusion before being diagnosed. I have a rare type of giant cell hepatitis which is normally seen in infants and not adults. I am the only person my transplant team has treated with this condition. Imagine explaining this over and over again.

As to ammonia, normal is 50, however people can function differently at different levels. My ammonia was over 400 when I was diagnosed with HE and I was not in a coma. I have heard others have terrible HE symptoms at 60-80. With two doses of lactulose a day and 1200mg of Xifaxan a day, my ammonia averages between 100-150. I have problems with my short term memory and word finding. If I feel out of it, I take an additional dose of lactulose.Angry


10/14/2011 07:58 AM
mpmom
mpmom  
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Randy,

That is why you must have documented proof of abstinence for 6 months.

Transplant centers as Mike say usually do random testing. I have also seen patients

called at home and given a time frame in which to be at their family Dr for drug testing.Especially if they live a good distance from the Center. Most patients can be referred to a center before they reach the 6 months and the Center will handle the testing and most centers often require some type of formal counseling.

Susie is right about the Ammonia Level not always causing Encephalopathy symptoms I can function pretty well with levels around 100, But if I get a UTI or have to have a narcotic for some reason. I'm really bad. My short term memory is bad all the time also.


10/14/2011 12:04 PM
TamieJP
TamieJPPosts: 2322
Senior Member

Our local 'normal ammonia' level is 0-33. (Just so you know that some lab values differ. You need to know what is the norm at your lab.)

10/14/2011 02:11 PM
dmanflan
dmanflan  
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I wish I could blame my short term memory issues on ammonia levels! I think of mine as "senior moments" even if I'm not such a senior!
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