encephalopathy...so when do we go to the ER?

[Suzi]

Hi folks,

It's been awhile since my last visit....been quite the roller coaster ride since I was here almost two years ago, with lots of detours along the way.

 We were very close to doing live donor transplantation with ME as the donor....but timing was not so good....one minute they were all for it, the next minute they were putting the breaks on things....doctors seemed to be side stepping the why's but a little research took me to Pittsburgh and all the hubbub over transplanting too soon and then it all made sense.  Dan's MELD was around 15 at the time.  then Rochester lost two surgeons and stopped doing live donor all together.  They have just gotten full staffing back, but we have opted out of live donor as a possibility....for family reasons...and there are MANY (those detours I mentioned). 

Anyway, Dan's MELD seems to fluctuate between 20-25 right now.  He was hospitalized for fluid retention and dropped 30 pounds of fluid in 5 days. Prior to that he was like sponge bob....body was just like memory foam!  He had one pariencentisis (spelling) but when they went to do the second one they found no pockets of edema...it was all in the tissues.  that was in July.

 He has continued losing weight and has dropped a little over 60 pounds of fluid.  He is still a bit heavy, but Holy Cow....so much better...now, it seems like I need to make him eat more...afraid of undernourishment.  I'm also guessing that he needs a shift in his meds because of all the changes.  Doc expected him to start putting the pounds on again, but so far hasn't

the past 7 days have been a ride on the wild side at times with the ammonia levels.... a couple of really bad days because of slacking off on meds because of travel and those 'family things"...doubled up on lactalose and all seemed fine again....had a good 3 days or so, religious to the meds, but today he seems to be flagging again...so, here I sit, on a Friday night wondering "What constitutes a trip to the ER?"  I expect these things are going to happen more often.  I know the only treatment is the lactalose, which we're doing...so what does pre-coma look like? 

We have a doctor's appointment on Wednesday...bloodwork two days previous.  I'm hoping he doesn't go real bad again....I can tell when he starts taking the remote apart! But I am curious as to if there are some signs that I should be looking for to not get to the coma-thing.....

any thoughts?

thanks as always,
Suzi

[Hank's mom]

Suzi -

Quite a ride sounds like an understatement - oh my! Lactulose is not the only thing to help - I take senna, because I also take Lactulose, fibrasure, Dicycline, and xifaxin - each is in regard to other mental effects as well as physical - and I am on the TP list - no day at the beach.

As far as the ER goes, if you feel he is in danger, then that is the place he should be, a face mask (for germs, etc. there) wouldn't hurt.  And, I would call the tp docs everyday, several times a day at this stage - he really does seem to be at a very dangerous place. (Please understand - I don't want to frighten you - but that is kinda the way it is.)

And, if you don't feel safe in your decisions about him, then that too is another reason to call for help. Caregiver, is an exhausting job, especially when your caring for someone who is as sick as your husband, and you need to be on top of your game to help him.  It really is an important thing to tend to yourself.

One question - does he have a TP coordinator - mine is the first call I make when I have questions, no matter how small or large.  The docs aren't always available as you can imagine, doing either rounds or surgeries, and probably some well-deserved down time.  My coordinator makes the contacts for me if it is a question she can't answer or something that really needs to be discussed with my doc.  (She does usually double checks with him, and then calls me back as it is.)

I realize I am very lucky to have some of the best doctors in the world watching over my health - in fact they taught me what is important, what isn't, what to watch for, etc., and they act very quickly in emergencies.

All the best, and keep us posted.
Susie

[Suzi]

thanks Susie,
today we're a bit better....reading the swap sheet, looking for a truck....a good thing!  seems like it's up and down...more down's of late.  Has appointment with GP on Monday, Gastro on Wed....I think, as of right now, we'll make it til then.   Takes xifaxan as well as lactalose...both make him sick to stomach...think part of problem is the multitude of dieuretics...should be able to cut those back since he's quite svelt again! 
Our Gastro guy is still pretty much in charge of his case...like him a lot but why do crisis always happen on the weekend?  I sometimes feel like I over react to things....especially, since I know this is the way it'll be for this final stage before TP.
Your right...I should contact coordinator...can always email her...I hate getting put on hold and she's pretty good about calling back after a frantic email. 
thanks,
best wishes to you as well!
Suzi