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elevated ammonia levels

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Posted 3/31/2009 4:54 AM (GMT 0)

Paris, I'm sorry I didn't have a chance to get back to you until now.  Regarding the lower extremity pain, is it due to the edema?  If so, massaging the feet with the thumbs, pushing the fluid upward and continuing this little by little, all the way to the knee, will offer temporary relief.  The TEDS hose also help a lot, though they're uncomfortable and difficult to put on. 

Do you have any family or friends nearby?  Neighbors?  You are going to get burned out fast if you don't get some respite care so that you can get out by yourself a few hours a week.  You cannot do this all by yourself.

Please let us know how things are going.

Hugs,

Connie

Posted 4/9/2009 2:40 PM (GMT 0)
His legs and feet are not swelling, they are just stiff and hurt.  I massage them all the time.  He seems to be getting worse by the day, sleeps more and his stomach is starting to swell again.....had 7 liters removed last Friday.  I have family to help me, but of course he is more comfortable with me helping me.  The VA furnished a hospital bed with a tempupedic mattress which has helped so much.  He is so depressed and so tired of it all. 

I want to take him to see his sister in New Hampshire if we can possibly make it.  He really wants to see her....she has stage 4 breast cancer.  He has a doctor appt at the VA next week and I am going to ask about taking him.  Hopefully everything will be ok and he will be able to make the trip.

Posted 5/20/2009 7:28 PM (GMT 0)
I just joined this forum because I can relate to you all. Late Dec 2008 my husband was diagnosed with non-alcoholic cirrohsis of the liver. Our lives have been topsy-turvey ever since. His latest lab work showed a high ammonia level and a low sodium level -- we try our best for him to eat and drink properly - but it seems like there are still problems. He is currently seeing a GI dr, but will be seeing a transplant specialist in about a month.

This is SO SCAREY to me. I want to be with him 24/7 - but have to work because he is unable to. He is very down because he feels it is his job to take care of the family - but currently he is unable to.

So much to face - so many decisions - so many unknowns - health, emotional and financial!
Posted 5/20/2009 10:45 PM (GMT 0)

ok_munchkin, welcome to the forum.  I am so sorry that your husband has liver disease.  To make sure that your post gets seen, would you please start a new topic to introduce yourself and your situation?  (Just hit New Topic instead of Reply.)  We don't want you to "slip through the cracks" by being on another person's thread.

Check out the education threads located in Hepatitis Resources.  There is a topic on high ammonia levels/hepatic encephalopathy there.  Is your husband taking Lactulose yet?  I am glad to hear that he will be seeing a specialist.  Primary care docs and GI docs are really not sufficiently educated to deal with the rigors of liver disease.

Read as much as you can to educate yourself about the disease so you will be better prepared to deal with it.  You will also get a lot of support here.

Hugs,

Connie

Posted 7/7/2011 1:47 PM (GMT 0)
I have read all of the posts on this web site my husband is currently in the hospital for high amonia levels...we have been dealing with his illness for almost 3 years and at this point looking for more information on a personal level than the doctors are providing.

 

Posted 7/7/2011 2:54 PM (GMT 0)
Hi Dogwood,

When I was first diagnosed with HE in 2008, my ammonia level was over 400.
I was put on lactulose and Xifaxan. I adjust the amount of lalctulose depending on how I feel daily. Some days I need more than others. My husband will also ask me to take it if he thinks I am acting oddly. More recently, my ammonia level has been stuck around 100, twice normal. My hep team is ok with that number since I seem more with it. I have also reduced the amount of beef I consume and eat more chicken, fish and pork.

Susie
ESLD and Cirrohosis
Meld 15
Posted 7/7/2011 6:58 PM (GMT 0)
Dogwood4, welcome to the forum! As a new member, it is best for you to start a new thread (hit New Topic instead of Reply and copy and paste your above post into it...or rewrite it.) In this way, you will get more replies. You picked up a topic that was over 2 yrs. old and we haven't seen that poster since then.

I'm sure you know that high ammonia levels cause hepatic encephalopathy (HE), which in turn causes memory problems, angry behavior, confusion, etc. Lactulose is the common treatment for HE, removing the ammonia through BMs. Sometimes Xifaxan is also prescribed with the Lactulose.

Hugs,
Connie
Posted 8/2/2011 4:05 AM (GMT 0)
I just found you guys and already you have been a great help to me.  My 52 year old daughter has been drinking since she was in her twenty's and it has cought up with her.  Two days in ICU and two more on the reg floor with high ammonia levels, problems walking, confusion, and sleeping all the time lead me to take her to the ER.  Never though I would see this girl looking like a zombie, but here she is and I though this is how it is going to be for the rest of her life.  I am 75 and not able to get around very well myself, lost my husband to cancer in May, which really set my daughter off on a long drinking bout.  What I have read here, tells me it will be rough, but it can get better then it is now.  I have to think about what will happen to her when I am gone and what you folks have said has already helped me to think somewhat stright.  Thank you for being there and letting me know I am not alone.
Posted 10/14/2011 8:37 PM (GMT 0)

Hello

I know what you're going thru,,I was hospitalized three times for high levels of ammonia

It is very dangerous not to get the count down to a 30 or 40, the last time I checked it, it was down to 16

I take lactalose several times a day,  if I didn't,  it will escalate to a dangerous level

Hope you get it under control !!! turn

Posted 10/15/2011 1:26 PM (GMT 0)
Thanks Snowman

Yes things are going well and her last count was 25.  She working the program and not drinking.  Hopefull this has scared her enough to keep her clean.  The lactalose was the thing that helped the most.  Only God and time will tell where this will go.

Perquimangal 

Posted 10/15/2011 6:05 PM (GMT 0)

That's great news, P!  So glad she is working the program and that the Lactulose is helping.  You can increase the amount she is taking, if necessary.

Hugs,

Connie


Posted 10/15/2011 7:01 PM (GMT 0)
Amonia level was 25 yesterday, it was 40 the last time and I don't know what it was when she ended up in the hospial.
Perquimansgal

By the way Perquimans is the river that runs behind our house and in American Indian it means "land of beautiful woman" and that is what my daugher is, inside and out
Posted 10/16/2011 6:11 AM (GMT 0)
Perquimansgal-that's good news that your daughter is working the program and that her amonia levels have decreased. I believe that 25 is within normal range. Praying that she keeps with the program.

Emma
Posted 10/16/2011 1:46 PM (GMT 0)
When I called 911 in august ....my husband seemed fairly normal and then slept all that day and by night time was really confused and couldn't walk ..I had to call ems because I couldn't handle him ...when we got to er his amonia level ......was 180 .....laculose is a lifesaver
Posted 8/13/2012 7:01 AM (GMT 0)
I do hope this thought helps.I had with a family member with very elevated ammonia levels in their blood,not due to liver failure but due to the progression of cancer.At first the doctors would not believe me that their behavior had changed but my pushing caused the hospital to look into blood counts and find that I was correct...the means in which they resolved the issue was through the drug Lactulose.It draws out the ammonia from the blood stream/mind and is a Good send.
Before giving the drug which comes in a liquide form my family member called the police to inform them I was trying to kill them(they were in the hospital at the time)and so I had 3 police cars,an ambulance and my minister break into my house to save stop a murder.Needless to say no one was in any danger but after that I went on a mission to find what was causing the sudden mental issues.
Posted 8/13/2012 11:52 AM (GMT 0)
Toniette, you picked up on a thread that is 10 mos. old. If you or a friend or family member currently has liver disease, please start another thread by clicking on New Topic instead of Reply.

Thanks!
Connie
Posted 8/13/2012 1:02 PM (GMT 0)
ok, i'm not sure where to start because i'm still a little confused about this. But my aunt had some more tests done and her ammonia levels were 150, which i'm told and from reading have learned thats 2x what it should be. She sent me a text saying to not pray for the donor list, but i'm not entirely sure she would even make it, because she is a long time drug and alcohol user. And when my ex husbands father passed away from a liver diease they wouldnt put him on there because of his alcohol abuse and diabetes. She is still waiting for her apt with the liver Dr. and i supose we will go from there, but even though i am 27years old my parents still feel the need to shelter me so i dont know how bad things are. i hate asking this question, because i'm not sure i want to know the answer, but should i be preparing to lose her?
Posted 8/13/2012 2:15 PM (GMT 0)
Khaos77, welcome to the forum. As I told other posters on this thread, as a new member you should start a new thread of your own by clicking on New Topic instead of Reply. You can copy your post here and post it into your new thread. You may want to consider reregistering under a differnt user name, as there is another poster here with a very similar name. Meanwhile...if your aunt is still drinking, she will not be eligible for a liver transplant. She will need 6 mos. of DOCUMENTED sobriety, usually in AA. If she continues drinking, she WILL die and it will not be an easy death. Just when is anybody's guess, as everyone is different.

Hugs,
Connie
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