dads ammonia levels are 400!!!!

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nyrican
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/22/2009 3:35 PM (GMT -6)   
my dads levels are at 400 today. he was fine last night, laying tile and painting a dresser, this morning he had to be rushed to the emergancy room.  Other times the levels were 200...always in intensive care, yet not this time. My question is how did it go up so fast and affect him like that? He used to be a very active person, bodybuilding and handy man stuff...now he is a COMPLETLY different man.   The DR.s say there was no brain damage (he goes to the ER about every 2 weeks for high ammonia).  He takes meds 4 times a day...
Questions:
1.  we have amny people who want to be tested for match. can we do that or does he have to get on the list no matter what?
2. his DR said he can't get on the list yet....why?? i don't really know. What are the critera for that? how do they determine who gets on and who does not?
3.  why did he go from being fine to being intubated in the ER overnight?
4.  is he in a COMA???? do people usually pull out of this?
 
he is only 58 years old, takes care of himself and eats propperly.

nyrican
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/22/2009 3:52 PM (GMT -6)   
I forgot to say he has cirrosis of the liver, with no drinking or drugs in his past. he also tested negative for hep C, but that was 10 years ago when he was first diagnosed with cirrosis.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/22/2009 6:23 PM (GMT -6)   

Hi, NYrican and welcome.  I'm so sorry that your dad is going through such a hard time.  It sounds as though he has cirrhosis from autoimmune hepatitis or possibly from a fatty liver.  Sometimes (rarely) there is no known cause.  You say that he is on meds, but don't specify which ones.  Is Lactulose one of them (used to control encephalopathy from high ammonia, and brings the ammonia level down through bowel movements.)  I have no personal experience with high ammonia, but many others here do.  I'm sure someone can give you more input than I.  It could be that your father overdid it with the laying tile and painting.  Whether this would raise his ammonia level, I don't know.

My prayers will be with your you and your father and family.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


myfather
Regular Member


Date Joined Dec 2006
Total Posts : 87
   Posted 1/22/2009 6:35 PM (GMT -6)   

 hi nyrican, there r a lot more people here that can help u more than i, but i will tell u  that ammonia levels can go up in a matter of just an hour or less it could have been something he ate or if he didnt have enough bowel movements that day, that is so inportant and diet, my father also had the same thing but was much older and didnt stand a chance. i will tell u it is like a roller coaster ride day in and day out. the coma ur talking about no brain damage in my father eighter he was out about 4 times depends how fast they get him cleaned out. nobody gets used to it  as a caregiver it will take all u have and more to deal with this horrible disease. good luck my friend.

my prayers r with u and your dad.

 there r many people who can help u with the rest of the questions.

 myfathers child

 Annette


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/22/2009 7:14 PM (GMT -6)   
Welcome to the forum Nyrican. My husband has cirrhosis and hep C. He has also been told that he is not sick enough to be listed yet. We were told that when his meld score reached 15 and stayed there or above for awhile they would then do the work up to get him on the list. He has had trouble with his ammonia level but never bad enough to be hospitalized. He takes lactulose and that seems to keep it under control. I think maybe each facility has different rules for getting someone listed. I have heard of several people with MELD scores of less than 15 and being listed. I'm sorry that your dad suffers with this horrible disease. You have probably already begun to realize what a rollercoaster ride it can be. I am glad you found us. There are many people here that understand what you are going through. It really helps being able to talk to others that understand. I'll be praying for you both.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/22/2009 9:17 PM (GMT -6)   
Hello Nyrican and welcome to HealingWell. As you see you have found a very compassionate, diverse group here.........

I just wanted to add that sometimes infection can cause the ammonia levels to rise quickly also.........Just check his temp. If it is above his normal .....look for any skins abrasions that may be infected........My husband's lower legs would get infected frequently......I guess from the swelling they would turn red and be hot to the touch. Some patients need to be on antibiotics for long term to help keep their encephalopathy in check. At least my husband was.....

Do you go with him to his appointments? Or are you getting the information second hand..........If you can, go with your dad and mom to an appointment and ask the doctor any question that you want....I'd get his and your mom's permission first..........

Each transplant center does have their own hoops that they expect their patients to jump through.......Go on the transplant center's website that would be handling your father and see what theirs are....... If fact go on several that maybe in his area......Compare them.

Hang in there........thoughts and prayers...........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 1/23/2009 12:03 AM (GMT -6)   

Nyrcin

I agree with PG about the high ammonia.  My husbands ammonia did go up a few times for no apparent reason.  Once he started taking Neomycin every day it stopped it.  Also if his blood got low it would make his ammonia go up.  So there are other things that make the ammonia go up.  Just keep reading and reading and reading about the disease.  I'm here to tell you there are not enough hours in the day or days in the week to learn it all.  But the more you know the more empowering you become.  Hang in there.

 

JoAnn

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