Re: What can you tell me about high ammonia levels?

[Guest guest]

Bobbi:

Just happened to be near the computer this morning soon after you posted and I

wanted to give you some support and hope and most of all just be here to vent on

if need be.

Scary, yes and most of the advocation is on your shoulders when they PSC patient

gets into crisis. Ammonia levels can be one of the scariest and someone with

the experience of dealing with it will get to you soon. But in the mean time

you can call on the hospital staff to help. Ask the nurse or even better call

the hospital and ask for assistance in getting and understanding the labs.

Weekends are the lowest sfaffing times so be proactive and if all else fails

demand you get some help, don't let them put you off.

Get copies and keep a daily diary, it will be so much easier when the crisis'

happen to relay past and present labs, tests, admittances, meds, doctors names,

etc. I found it was my saving grace when Bob was so sick. Barb H. deals the

most efficienctly of anyone I know besides maybe Ami F. They both could

probably sit for the MD exam and pass. There are many others who are also here

for you so as away.

If you can't navigate the archieves or any other computer need, Ian is the man

on board almost 24/7 just ask him and he will make the easiers path for you.,

Right Ian?

Hugs and kisses to you Bobbi(hubby too) and rest assured some of the gurus will

get to you soon. This group is one of the most amazing support groups I have

ever seen.

Fondly, Keep on Keepin Girlfriend.

Dee wife of Bob, ileo, psc, Miniers Disease, Arthritis

[Guest guest]

Thanks Dee!

said he talked to one of the doctors at the hospital about his ammonia

level and the

doctor said it varies from person to person. What might be high for one patient

isn't

necessarily for another. The dr isn't concerned about his ammonia level and so

far he has no

symptoms of hepatic encephalopathy so that was good news!

He's having am MRCP tomorrow and possibly a pericentisis. He still needs a

cardiac stress

test and EGD to be listed so they're hoping to get those done while he's in the

hospital.

Everyone seems like they really want to get him listed soon.

He asked me tonight to help him write something for our baby that is due in July

in case he

doesn't make it. After I hit him with a pillow and told him he was going to

be fine, I told

him that if it would make him feel better, I would be happy to help him write

anything for

the baby he wants.

He's having a pretty hard time emotionally right now. And they still don't know

what's

causing the darn fever! Hopefully they'll have the results of the cultures back

by the time the

docs are in to see him in the morning.