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Ammonia Levels

My husband's ammonia level is at 128...as a result of his HepC he has Class IV cirrhosis.  They tell him his liver is too far gone and he's too high a risk for treatment.  He's been "maintaining" for the past two years.  He watches his diet and takes milk thisle.  He's also a type II diabetic and since they've put him on Enulose for two weeks, the boy guy spends all his time in the bathroom...anyway my question is this...is 128 dangerously high?  He is not showing any signs of encepalophy other than he has had some mild swelling.  I also want to add that he spent several days out in the heat roofing right before his blood work...could the heat (which took a lot out of him) mess with his electrolytes and his ammonia levels?  Thank you in advance for any advice.
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Avatar universal
I can't tell you or anyone else what is right for YOU. In my case my kids one is 23 the other 25 Have know a bit about my involment with drugs and such . It was hard for me to be so honest with them in the begining but as time went on they just said dad was an old hippy. When I found out about hep C it was the night before my oldest childs birthday so I did wait a few days to tell the kids, they have been great on the night of my first shot my wife was not at home and the kids took turns sitting and fecting water blankest and so ,they were a great help. Part of letting then in on my young life was so they would be awair of the differnt things drugs do to a person and the fact that there dad was one of those old drugies from the 60ties. That is my story and all I can say to you D is go with your heart, only you can decide what is best for you. You might also think about if things were turned around and your kids did not tell you.  THINK ABOUT IT    J
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Avatar universal
Haley,  It sounds like you are a few steps ahead of me.  I just found out a little over a week ago that I'm positive for Hep C.  I don't have the results back yet for viral load and type.  I hope to hear by Aug. 18.  This is very nerve racking, to say the least.  I have told my mom, daughter and special friend.  I don't know how to handle work about it.  Don't even know if/when treatment will start, although the doc and nurse have already talked to me some about it.  It was suggested I may need to start with AD prior to starting treatment.  This is all speculative now, because it's early in the diagnosis process.  I went to the emergency room for abdominal pain twice in the last 10 mo.  Had gallbladder surgery in April, 4 episodes of chest pain, angioplasty, EGD, ERCP, inflammed stomach and esophagus, post ERCP pancreatitis, weight loss, fatigue, and now this.  I had colon CA in 1979.  A tumor was found during emergency surgery, required blood transfusions.  This is the only thing I can point to as the possible way I got it.  Guess it doesn't really matter now.  I too am happy to have found this forum and will be checking in often to learn and connect with others.
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Avatar universal
http://hcvadvocate.org/gettingdb.htm
http://www.cfids-me.org/disinissues/
http://heppie2000.tripod.com/index-3.html

there are a few of the many sites I have run across regarding benefits.  I am sure there are plenty who need it...and a few who are lucky enough to be getting some help from it.
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Avatar universal
Have you ruled out that your son is not infected?  Do you know exactly how and when you acquired this dragon?  Is there a possibility that you could have passed this to him?  ARE YOU SURE? Is it fair to keep something like this from your son, whom you need his support?

Sorry for the tough questions.....but these are the thoughts that came to my head.

My advice (for what it is worth) is to share the information with your son, ensure that he does not have this dragon and be relieved that he can provide you the support that YOU NEED FROM HIM.

Best wishes,
Lurch
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Avatar universal
I agree with the above remarks to tell your kids.  It's tough to tell them, but they can help you get through this.  Even younger kids may want to know; just be sure to explain that all of the tx effects are temporary, and that however you're acting at the moment, you love them, and want to be around for them.  Informing them well will help them understand that they are not in danger around you.
One more consideration, your son probably needs to be tested to rule out that he has it.  If he tests positive, the sooner he knows, the better his odds of beating it.  But let's hope he tests negative, as most of our kids do; and then think how much YOU, and HE, and ALL your family - can be relieved.  
Maj Neni
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Avatar universal
does anyone get ssi/di for there hcv? I can't work I've lasted  for 10 years now, and can't do it anymore i want to my brain wants to go but my body won't but i'm still tryimg to fight it.
HELPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPPP!!!!!!!!!!!!!!!!!
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Avatar universal
Thank you!
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Avatar universal
I told both of my kids.
21 and 27...
They accepted it and helped me thru it all.
I even told my mom.
I had to let them all know for I did have bad sides.
It used to worry me that they were going thru so much with me but if I hadn't told them..it would have been so much worse.
Be Well,
Lize
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Avatar universal
I waited awhile to tell my 2 daughters. 21 and 22 years old so they could finish there finals in college. It was only a few months so I didn't even tell them I waited. The short wait was good for me to understand this disease. The other thing is they needed to be tested. Both are negative. Both said I would have been sooooo mad if you didn't tell me. They both said how would I feel if it was one of them and they didn't tell me? I  would have been very upset. I have to say when I do feel bad I don't share it to much with them because they feel so bad for me, then but I use the MB. Worrying about telling them was worse than doing it.
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Avatar universal
This may be my soapbox subject. First off, we do not protect others by keeping information to ourselves, we protect ourselves.  

My big point is that as long as we treat Hep C as "something not to talk about" or are ashamed to have this disease, then we perpetuate all of the stereotypes that have stuck to it over the years.  Respond to Hep C as if it were any other serious illness you could get.  One to fight.  Learn all you can and educate everyone you can.  

I don't shout "I'm a hepper" from the rooftops, but I wouldn't if I had cancer, or MS.  At the same time, if people in my life ask how I'm doing, I tell them.  You will receive some negative responses, but you'll be amazed at how many are aware of Hep C already.  I am not proud that I have Hep, nor am I ashamed.  I'm ticked off and I'm going to fight and make it go away.  It's much easier with family support and you will not rob thyem of the chance to be aware.

Kim
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Avatar universal
I told everyone that I was doing tx, including my 83 year old mother. I didn't feel like visiting her very much during those months and she would have wondered why. She has been amazingly supportive, as were all my colleagues, friends etc. I think that is what helped me get through tx so easily without the help of any anti-depressants - having so much personal support. This board is great, but it is no substitute for the support of friends and family. A friend of mine, recently diagnosed, is so scared about telling people that she has not even told her husband and I can see how stressed she is as she keeps getting caught out in white lies about doctor's appointments etc. Your son sounds as if he is strong enough to take this news. I would advise you to tell him at the earliest opportunity.
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Avatar universal
If you are not telling your son because you want more information on the illness, that is a one week maybe two week delay. I think you should tell him reqardless of the amount of infromation you have. He may want to share this with you. I tend to be  a private person and didn't want any one to know. When my sister found out she was upset that I didn't tell her. Then the same with my bother, THey have all been very supportive. Be generous- tell him. Doodle Bug
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Avatar universal
Hi, Im new here and have not started treatment yet.I have told my immediate family,my sister my two sons and their wives and my boyfriend. They have all been very supportive. And we have all at points been scared by this.Man am i glad i found this forum...i already feel better about starting.My younger son was told after my older son and was a little miffed i waited to tell him....it was nothing except when i saw them first..if i had it to do over i would get all together and tell them all at once.
Anyhow...i was feeling pretty alone until i found this board...I plan on staring peg intron shots once a week first week of sept. and rebetol 2 pills in am 3 in pm.....i have a high viral load and biopsy showed slight inflamation.my white count is low now neutraphils....
these days i have felt kind of nauseated and light headed ...is this just my normal "dizziness" or are these symptoms???
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Avatar universal
I didn't tell my kids (25 + 22) until just before I started tx (9 months after dx).  I was so freaked out, that I decided to get a handle on things for myself so that I could properly explain what was going on.  I would have scared them to death if I had confided right away.  My daughter was mad for me keeping quiet but only for a minute.  They understood that I had to come to terms a little first.  I told my best friend, my brother and my Mom and that's it (and of course hubby).  I have many close friends who don't even know I am going through this.  I just like to maintain some normalcy and not have anyone treat me like the "sick" person, although they surely must wonder why I no longer enjoy a drink with them anymore and getting kind of skinny looking.
I found it to be a tough decision.  They'll forgive you.  
ambush :)
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Avatar universal
I would also be very upset with my parents if they didn't tell me.
I chose not to tell my mom and dad against everyone else's advice because my parents are 80 and 81 years old. I couldn't see telling them about this because I knew that it would just break their hearts, and they would feel helpless, like most parents do when they can't help their children. At their age I felt that telling them wouldn't accomplish anything.
However, your son is a younger man and I believe he would be able to handle this a lot better than you think. At first my daughter was very upset, but she eventually was able to deal with it, and has been a great source of support for me. :)
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Avatar universal
Hi - I agree with Galen, that as a daughter, I would want to know if my mom was suffering from this, or any other illness... but, as a mom, I understand your desire to protect your son.  I have a 20 year old at Boulder (we are in Denver), so I see him frequently and had to tell him something.  But, it was difficult and I have tried to be as normal as possible when he is around and to downplay (I've told him the truth, but I don't get excited or let him see me worry) the severity of the disease and treatment so he doesn't worry too much.  I bet your son will be glad to know so he can be supportive and love you.
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Avatar universal
I went into complete liver failure before I was even tested for hepc.  Altho ESLD, I did 24wks of tx, cl@4wks, now post tx 9mo, still SVR.  The quality of life is so much better, there is no comparison.  Dr's now treat patients like your husband.  I would urge you to get another opion ASAP!!  Tx will improve and extend life.  (2b, 24wk)
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Avatar universal
All I can tell you is that I would be really upset if my mother kept such a thing from me.  When you don't let your loved ones in and accept their help, worry, and love, then you shortchange them as well as yourself.
As to how to tell him, you could start the conversation by asking him if he has a while to talk as you have something important to tell him.  Then tell him the truth.  Be prepared for a little anger for holding out.  I know my first reaction would be to smack you then hug and never let go.  Please don't let this chance for you son and family to love you go by any longer.
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Avatar universal
Hi - I don't know if this at all helpful, but my perspective is that I'm a different person, living on a different planet, than I was before I started tx. Giving  the important people in my life a clue that I've gone off to some another, weird, world for a year seemed  natural ( not to mention that I couldn't find the energy to pretend to be normal for more than a couple of minutes).
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Avatar universal
Hello everyone ~
I'm on treatment and in my 15th week. Sides haven't been bad other than a few weeks ago when my hgb level went drastically down and I started on Procrit.  That was a tough couple of weeks until the Procrit could start assisting. I'm feeling better now and proceeding full speed ahead.

Here is my deal. I would like some opinions, suggestions and comments, please. I have one son, daughter in law and 2 grandchildren.  They live in a different state than I do and we see each other about every 3 months.

My son doesn't know that I am treating for hepC nor does he know that I even have this. Somewhere along the line when I found out that I had it, (3 years ago) I didn't tell him and just made a deal with myself to gather as much info as possible and wait to tell him so I would really know how to answer his questions.  When I decided to take the meds and go on treatment a few months ago, I didn't tell him then either.

I have it in my mind that I wanted to wait until after my treatment, or at least the last part of my treatment to tell him.  At that time I could tell him that I have HepC and that I choose the proper procedure and medicines to treat the virus and I still have it.  Or I would be able to tell him, I had hepC and that I choose the proper procedure and medicines to treat and it is out of my system.

I am now and have had for a while feeling that this isn't right of me not to be honest and up front with my son.  It really breaks my heart and makes me have second thoughts that when he does know that this will possibly and probably be the very first thing that he thinks of, as he starts off his day; worrying constantly about Mom.  I don't want to put this pain and burden on him right now.  He is so successful with his career, and he and his wife are extremely successful with their marriage and raising his children. I feel like they don't need this extra worrying right now.

I now have enough solid information about hepC and treatment that I could really explain it to him properly.  I just don't know how to start off the conversation.

My mother, my husband and my doctors know and of course, all of you on this forum who have supported me and given me a sense of hope, direction and encouragement.  That's it.  Comments?

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Avatar universal
The site you sent me to was very informative.  Thank you so much.
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Avatar universal
http://my.webmd.com/content/healthwise/149/37057?UID=%7B941B2BBF-610E-4CF8-A58F-169D2D8B2301%7D

This site has a table about 1/2 way down that indicates what normal ammonia levels are at various ages.

A little bit further down the article explains that ammonia levels do not necessarily correlate with the symptoms of encepalophy.

I hope this helps.

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