Encephalopathy Education

Mrs O, I can totally understand your frustration with hospitals. For years everytime my hubby went to the local hospital they got an instant look of fear and just stabilized him for transport to Boston. Weeelllll didnt I get tired of that!! It was to much for him 6-8hrs there then do an ER to ER transfer for another 6-8hrs there just to get him in a room to treat ammonia levels or an infection. Idiots.... so instead of telling them they were an embaressment to their profession and a few other choice descrptive words for "sissy's" I started to establish a relationship with nurses first then the Dr's.... it worked. Now when he is taken in (usually by ambulance) they get right in action..... labs..... NG tube to give lactulose and admitted to a room. They call our transplant coordinator and see if they need different labs done. I wait 30-60 minutes before I get there and get a full report. It has been a wonderfull thing to see the changes, I also have educated the nurses on transplant info.... how the meld score works etc... they said they see a fair amount of people that come in with liver issues and arent aware yet of the severity, so they feel we have taught them in ways to help other patients. Plus they like ME better when I am not acting as crazy as my honey! I can be scary I will admit..... especially when I forget my meds...... There are a few Dr's in boston that would prefer to not see me..... hehehe. got to get rid of pent up frustration. I only threaten to give out doses of lactulose with a turkey baster and tubing.... rectaly of course. Sue

PG,, hehehe some of the interns are still chuckling over that one, come to find out he is one of the top Dr's at BI hospital. I keep wanted to send a card of apology.... but hhmm nahhhh. One day I tossed a slew of josilin Dr's out too. Doug said he even wanted to leave with them..... hehehe!! He reminds me how happy he is not to be on the recieving end of my wrath. I stormed around 2 campuses of Beth Isreal hospitals and the medical center like a tornado with grey hair....... but in less than a half hour I had charge nurses, social workers and Dr's making calls to find me help and refused to take Doug home till they found it oh and I fired a few dr"s too. I have an attendant for 24hrs a week( all paid for), I have a tele med machine for vitals, med alert installed and pd for and all appointments only scheduled on my days off and no discharges from the hospital during my work hours unless they provide transportation and give me time to have someone here when he arrives. Not bad huh?
Sue

Bumping for new members.

Sue

Man do I need you in my corner.  My husband is in the hospital right now with high amonia levels.  After an 8 hr wait in the ER his levels got even highter.  They were only 185 but by the second even though they went down his metal status did not change.  The admitting Dr. and I got his levels to a normal range backed off on the Lactalose to 3 doses a day and his amonia spiked back up.  Its now back in the 80's.  The strange thing his metal status NEVER got better.  He knows where he is but doesn't know all the rest like who the Pres is etc.  I'm getting scared.  We are now on day 5.  No imporvement on metal status.  I will not know the new numbers until Tues AM.  He's eating some but is so limited because of protein limits.  He has not had amonia problems for at least a year.  Its just crazy.  His MELD is only a 14!  I'm going to try and get some sleep in my own bed.  I'm so tired.  Those hospital chairs are horrible.  Anyone have any suggestions????

JoAnn

Hi All, I am new to the site but my husband is in hospital at the moment with encephalopathy. It is the third time he has had it in the last 8 months but this time it came on very sudden with no warning and he is 20 times worse than previous times. This time he was totally on another planet and didnt even know he needed the toilet, what country he lived in or his childrens names. The only thing he ever seems to remeber is his date of birth for some reason. He is waiting for a liver transplant. I was not aware that proteins in food made it worse till I read this site. I would also like to know, if anyone can help, can I expect this to get more frequent and worse each time it happens. This time has been so distressing for me and my children. My partner is only 48, so this is really hard to see him go through this, would still be hard no matter what his age, even though when he is better he cant remeber any of it. If anyone has any advise for me, it would be much appreciated.

I now watch him constantly for any signs, it is going to come on or any strange behaviour, which can also put a strain on the relationship, cause all he ever says is he is fine, even when he cant remeber his own name.

Bump

bump for Laura

I'm glad you found it helpful. You know how I feel....education is the key to better health and better choices. GOD Bless