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-   -   need information am scared of what might come (https://www.healthboards.com/boards/liver-pancreas-disorders/611517-need-information-am-scared-what-might-come.html)

metco89 06-20-2008 08:33 PM

need information am scared of what might come
 
hello everyone. I am hoping to get some information to help me understand what to expect. First I want to say I realize I am powerless over all this. I recently started dating a man I have known for sometime thru a recovery program, AA. well since we have been seeing each other of course we are getting to know more intimate details about each other. I noticed about a week ago he was acting different, forgetful, tired all the time, crabby, all the things he was not when we first met and then stated seeing each other. Well he told me he had liver problems from the alcoholism which I know about. Then he told me about having high ammonia levels and I know that is liver related. I didn't know about it causing confusion etc which he is experiencing to a subtle degree right now. still at stage where he doesn't think he is forgetful ie: will say something and then later if I bring it up he says he didn't say that and doesn't know what I am talking about.His whole personality is different and I thought he was just being a jerk until I read post here. anyway he has to have bands put on his esophagus for esophageal varicies with bleeding. What is that all about?:confused:

metco89 06-20-2008 08:37 PM

Re: need information am scared of what might come
 
sorry I know this very long but it is still me. I think things are alot worse than he is telling me. Just tonight he told me that he has to see a specialist about getting on a transplant list. I am so lost he is only 43. Something tells me I have a long road ahead. I am glad to have found you all and hope you can give me some insight on what to expect. thank you all for allowing me to get this out. I look forward to hearing from some of you who have been there Thanks again

feelbad 06-22-2008 07:25 AM

Re: need information am scared of what might come
 
sorry for what you are dealig with but glad he has someone there for him. you must be a very caring woman. he is lucky to have you in his life right now. there IS another option to the ongoing dragged out banding procedures that really don;t 'hit' on that underlying problem that is actually casuing those vessels to break and bleed. it is called the TIPS procedure? this is where they create kind of a temporary portal vein for him in his liver since his is not flowing anymore or must be very impaired if the ammonia is becomming an issue too. my son was 12 at the time he was going thru liver failure. that TIPS really saved his life and it also took away the repeated bandings and also the underlying portal hypertension that is the actual casue of the bleeding in the first place. tho the ammonia issue is still there,there are other things he can do to keep it down as low as possible til he can obtain that transplant. no protien or very little,also having a weekly ammonia blood draw will be needed once the TIPS is placed. it really IS an amazing procedure when you condider what it actually does for the patient. it takes away alot of different issues. just something he may want to check into if the bandings are either not working well or he is simply sickof having to keep going back for these to be done. that wouldall go away withthat TIPS being placed. it is all done thru the jugular vein in the neck? they just slide it thru that vein til they find a suitable vein to place a stent in,then that stent becomes the new portal vein. it just wont clear the ammonia like the P vein used to do,so the ammonia will always be an issue that just comes along with the territory he is dealing with. but it really made a huge difference in my sons quality of life til he needed transplant later in 2000. just being able to relieve that portal hypertension takes away alot of other issues that he will continue to deal with with only obtaining bandings.

i would most definitely speak to him about this procedure thn have him discuss it with whoever is actually managing his care right now. this particular stage of cirrhosis,prior to the TIPS being invented,was the stage that used to actually cause alot of patients deaths. there just was no other options availiable that actually kind of 'took away" that underlying big issue,the portal hypertension til that TIPS was created.

good luck to you both and please keep me posted,Marcia

lori1216 06-24-2008 06:24 PM

Re: need information am scared of what might come
 
I can tell you I just went thru it with my hubby. When his ammonia level is up over 40 he can become confused. My husband went to a ammonia level of 290 and ended up in a hepatic coma for 8 days on a ventilator in the ICU. Watch all the meats you eat limit it to 40 gm per day if any. Drink alot of water and absolutely no alcohol even mouthwash. He takes lactulose 4 times a day to clean all the toxins out of his body, he also takes 6 different meds to keep him going. Get a good GI doctor and followup weekly. We are now working to get him on the transplant list but it is alot of paperwork and time to get started. I wrote to our Senator and the congressman for help. he is totally disabled. He was never sick but one night he threw up blood and alot of it and we were told he has varices and was in liver failure. He is not a drinker of hard liquor maybe 3 beers every few nites but it was the HEp c you never know you have. It is a dormant disease for yrs. No more alcohol ever for a person with Varices it can hurt you bad. I have researched and wrote and learned alot. It is a long term process and for a 45 y/o man that I love it is well worth it.


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