Living with ALS

RavenP99 (Feb 21, 2010 2:22:45 PM)
(This user has entered Living with ALS)

RavenP99 (Feb 21, 2010 2:23:01 PM)
hi jim

Jim_VA (Feb 21, 2010 2:24:46 PM)
hi raven

RavenP99 (Feb 21, 2010 2:25:01 PM)
how are you ?

Jim_VA (Feb 21, 2010 2:26:33 PM)
i am fine ty how are you

RavenP99 (Feb 21, 2010 2:27:06 PM)
not too bad...hanging in there

Jim_VA (Feb 21, 2010 2:31:27 PM)
i'm thinking about the gator nationals

RavenP99 (Feb 21, 2010 2:32:05 PM)
cool I been there a few times

pete46 (Feb 21, 2010 2:33:36 PM)
(This user has entered Living with ALS)

RavenP99 (Feb 21, 2010 2:33:50 PM)
hi pete

pete46 (Feb 21, 2010 2:33:56 PM)
hi raven

pete46 (Feb 21, 2010 2:34:17 PM)
hi jim

pete46 (Feb 21, 2010 2:34:38 PM)
have you been watching olympic hockey raven?

RavenP99 (Feb 21, 2010 2:34:59 PM)
yup

pete46 (Feb 21, 2010 2:35:10 PM)
big game coming up

Jim_VA (Feb 21, 2010 2:35:33 PM)
hi pete

RavenP99 (Feb 21, 2010 2:35:44 PM)
can't wait to watch that one

pete46 (Feb 21, 2010 2:35:57 PM)
who do you think will win?

RavenP99 (Feb 21, 2010 2:37:26 PM)
not too sure

pete46 (Feb 21, 2010 2:37:55 PM)
danika's not doing to well in nascar

RavenP99 (Feb 21, 2010 2:40:10 PM)
well maybe just need more time

pete46 (Feb 21, 2010 2:41:23 PM)
i talked to jim west yesterday jim and he's having a rough time at that hospital

Jim_VA (Feb 21, 2010 2:42:03 PM)
the guy across the won A/G in 63 at The US Nationals

RavenP99 (Feb 21, 2010 2:42:46 PM)
cool

Jim_VA (Feb 21, 2010 2:43:39 PM)
yes i missed him

Jim_VA (Feb 21, 2010 2:45:04 PM)
what's the problem

pete46 (Feb 21, 2010 2:47:04 PM)
lots of problems. once while cleaning him, he had trouble breathing, vent alarm went off, they ignored it until rp came in and fixed it. all the eime jim couldnt breathe.

pete46 (Feb 21, 2010 2:47:52 PM)
another time aides stripped him, left him in bed and forgot about him. he couldnt reach his call button.

pete46 (Feb 21, 2010 2:48:17 PM)
also he found out the reason for his diahrrea was they changed his formule

pete46 (Feb 21, 2010 2:48:45 PM)
formula

Jim_VA (Feb 21, 2010 2:50:50 PM)
i wont leave the ICU because of that

pete46 (Feb 21, 2010 2:52:40 PM)
i guess he's going home soon

pete46 (Feb 21, 2010 2:57:25 PM)
us hockey team has been doing good huh raven

Jim_VA (Feb 21, 2010 2:57:27 PM)
i told him to get everyone in the family and train them

pete46 (Feb 21, 2010 2:58:25 PM)
good idea

RavenP99 (Feb 21, 2010 3:00:48 PM)
(This user has left DigiChat)

Jim_VA (Feb 21, 2010 3:02:30 PM)
i have 7 people that can do trach care

pete46 (Feb 21, 2010 3:02:33 PM)
celtics are getting killed

pete46 (Feb 21, 2010 3:02:41 PM)
thats good jim

Jim_VA (Feb 21, 2010 3:06:11 PM)
and 3 can change the whole tube

pete46 (Feb 21, 2010 3:06:31 PM)
family members or nurses?

Jim_VA (Feb 21, 2010 3:07:46 PM)
family

pete46 (Feb 21, 2010 3:10:25 PM)
celtics gave up 37 to denver in 1st quarter

Jim_VA (Feb 21, 2010 3:13:42 PM)
wife did it yesterday WOW

pete46 (Feb 21, 2010 3:14:15 PM)
thats great jim you have so many involved in your care

Jim_VA (Feb 21, 2010 3:16:22 PM)
they all don't like it}

pete46 (Feb 21, 2010 3:17:50 PM)
does it have to be done often jim?

Jim_VA (Feb 21, 2010 3:20:52 PM)
when i go to the ICU the nurses want to watch my wife

pete46 (Feb 21, 2010 3:24:23 PM)
they learn from her?

Jim_VA (Feb 21, 2010 3:28:30 PM)
we change every 6 weeks

pete46 (Feb 21, 2010 3:29:01 PM)
change what?

Jim_VA (Feb 21, 2010 3:31:32 PM)
the whole tube

pete46 (Feb 21, 2010 3:31:53 PM)
do you need to go to icu to do it?

pete46 (Feb 21, 2010 3:33:53 PM)
celtics are battling back, down by 9 now

pete46 (Feb 21, 2010 3:44:43 PM)
celtics were down by 20, cut it to 7 at the half

Jim_VA (Feb 21, 2010 3:46:19 PM)
no we do it at home

Jim_VA (Feb 21, 2010 3:47:22 PM)
great

Jim_VA (Feb 21, 2010 3:50:55 PM)
i wouldn't advise jim to try it

pete46 (Feb 21, 2010 3:51:48 PM)
he is getting home health personnel from an agency of some sort

pete46 (Feb 21, 2010 3:54:03 PM)
covered by insurance

Jim_VA (Feb 21, 2010 3:56:46 PM)
my ENT did it the first few times

pete46 (Feb 21, 2010 3:58:26 PM)
til the wife got the hang of it?

Jim_VA (Feb 21, 2010 4:00:15 PM)
very hard and bloody

pete46 (Feb 21, 2010 4:00:31 PM)
oh, hard to learn?

Jim_VA (Feb 21, 2010 4:04:05 PM)
she watched until it loosened up

westjlittle (Feb 21, 2010 4:06:44 PM)
(This user has entered Living with ALS)

pete46 (Feb 21, 2010 4:06:53 PM)
hi jim

westjlittle (Feb 21, 2010 4:07:15 PM)
hi guys

pete46 (Feb 21, 2010 4:08:01 PM)
how was your night? uneventful i hope

Jim_VA (Feb 21, 2010 4:08:21 PM)
hi jim

westjlittle (Feb 21, 2010 4:08:54 PM)
sleept fine till 5am

pete46 (Feb 21, 2010 4:09:04 PM)
thats good

westjlittle (Feb 21, 2010 4:10:00 PM)
then vitals, blood draw, feeding, docter...

pete46 (Feb 21, 2010 4:10:22 PM)
i told jim about some of the problems you had at that place

westjlittle (Feb 21, 2010 4:11:05 PM)
should i post my version?

pete46 (Feb 21, 2010 4:11:13 PM)
definitely

westjlittle (Feb 21, 2010 4:11:51 PM)
Last night I had to use the bedpan . I had finished and Christiana (nurse) and Veseline (CAN) lowered the bed . I immediately felt that something was wrong . They rolled me over to clean but when I rolled left it got worse . I could not breathe. I hit Christianas hand and tried to motion that something was wrong . She said I have wait while they changed sheets . My body decided that I was dying and I lost control of bowels . They then rolled me again. It got worse . At this point the vent alarmed . The alarm was the same alarm as being disconnected . It alarmed 4 times in a row but they seemed unconcerned . I still felt like I could not breathe . Finally Monica came in and said hurry up his oxygen level is 86 . They got me upright but I still felt that I could not breathe . They called the RT, he had a look and said the trach was loose and was probably blocked . He adjusted the trach and I felt better within a few minutes . They are either incompetent or indifferent to suffering . I don't want the

westjlittle (Feb 21, 2010 4:13:48 PM)
2 days later

Jim_VA (Feb 21, 2010 4:13:55 PM)
can you move your arms

westjlittle (Feb 21, 2010 4:14:03 PM)
Last night was really bad I had diarrhea all night Bob forgot about me last night as I was being cleaned and I asked him to burp my peg then he left room to get Ray. I was laying on the bed with no sheet and no call light -- that was at 10 to 1 AM -- I needed to pee at 1:15 but had no call light so peed self at 1:30 I had to use bedpan but no call light -- I had been sitting with the light on and no covers the whole time -- I had to soil self -- finally at 2:15 Ray came in to take blood. God only knows how long it would have been otherwise

westjlittle (Feb 21, 2010 4:15:13 PM)
loosing strentgh in hospital

pete46 (Feb 21, 2010 4:15:26 PM)
i can see why!

pete46 (Feb 21, 2010 4:15:50 PM)
the way youre being treated, and cared for

Jim_VA (Feb 21, 2010 4:17:50 PM)
is that a vent unit

westjlittle (Feb 21, 2010 4:18:37 PM)
brb nurse here

pete46 (Feb 21, 2010 4:18:45 PM)
ok

pete46 (Feb 21, 2010 4:19:14 PM)
he certainly had a couple rough nites

Jim_VA (Feb 21, 2010 4:19:56 PM)
yes

pete46 (Feb 21, 2010 4:20:39 PM)
that place sounds like something from years ago

Jim_VA (Feb 21, 2010 4:25:09 PM)
they brought the charge nurse in to talk to me "

pete46 (Feb 21, 2010 4:25:29 PM)
about what

Jim_VA (Feb 21, 2010 4:29:21 PM)
about going to the vent unit

pete46 (Feb 21, 2010 4:30:04 PM)
all hospitals have those?

westjlittle (Feb 21, 2010 4:30:06 PM)
i have filled two grevinces

pete46 (Feb 21, 2010 4:30:17 PM)
good for you jim

pete46 (Feb 21, 2010 4:30:27 PM)
smart to have it all documented

pete46 (Feb 21, 2010 4:30:49 PM)
i still think you should sue their ass

Jim_VA (Feb 21, 2010 4:35:02 PM)
some hospitals call them step-down units

pete46 (Feb 21, 2010 4:35:43 PM)
where you go after getting vented?

CRIS (Feb 21, 2010 4:35:58 PM)
(This user has entered Living with ALS)

pete46 (Feb 21, 2010 4:36:06 PM)
hi cris

CRIS (Feb 21, 2010 4:36:23 PM)
hi everyone....how is the gang today?

pete46 (Feb 21, 2010 4:36:44 PM)
good thanks

westjlittle (Feb 21, 2010 4:37:14 PM)
still alive

Jim_VA (Feb 21, 2010 4:37:45 PM)
hi cris

CRIS (Feb 21, 2010 4:37:57 PM)
I heard they solved the infection problem....are you feeling better, jim?

westjlittle (Feb 21, 2010 4:39:04 PM)
a little but issues with staff/treatment

pete46 (Feb 21, 2010 4:39:31 PM)
denver is pulling away again up by 9 after celtics had cut it to 3

westjlittle (Feb 21, 2010 4:40:26 PM)
seeprivteim

Jim_VA (Feb 21, 2010 4:41:45 PM)
supposed to be twice as many rt

westjlittle (Feb 21, 2010 4:41:45 PM)
stuck onolympics

pete46 (Feb 21, 2010 4:42:16 PM)
watch the us womens curling get spanked by canada today?

CRIS (Feb 21, 2010 4:42:29 PM)
give them heck, jim

pete46 (Feb 21, 2010 4:42:45 PM)
oh i forgot, you dont get that channel

westjlittle (Feb 21, 2010 4:42:59 PM)
russia-check hockey

pete46 (Feb 21, 2010 4:43:35 PM)
us canada hockey coming up

pete46 (Feb 21, 2010 4:43:45 PM)
should be a good one

westjlittle (Feb 21, 2010 4:43:48 PM)
yes

pete46 (Feb 21, 2010 4:44:37 PM)
i think the us mens curling is tonite too

westjlittle (Feb 21, 2010 4:44:46 PM)
bad diarreaha today

pete46 (Feb 21, 2010 4:45:03 PM)
still?

pete46 (Feb 21, 2010 4:45:07 PM)
from meds?

westjlittle (Feb 21, 2010 4:45:32 PM)
antibiotics

pete46 (Feb 21, 2010 4:45:53 PM)
do you still need the antibiotics?

westjlittle (Feb 21, 2010 4:46:43 PM)
have to finish course

pete46 (Feb 21, 2010 4:46:53 PM)
much longer?

CRIS (Feb 21, 2010 4:47:13 PM)
I am on oxygen, jim.....they panic when my oxygen level in 74...run to get the tank and about to give me a trach....oh brother

westjlittle (Feb 21, 2010 4:47:41 PM)
no one can tell me

pete46 (Feb 21, 2010 4:47:59 PM)
dr can't?

pete46 (Feb 21, 2010 4:49:10 PM)
brb

westjlittle (Feb 21, 2010 4:52:04 PM)
The infection control doctor decides the nurse does not know I will be graced with her presence on monday

westjlittle (Feb 21, 2010 4:53:17 PM)
depends on white count too

Jim_VA (Feb 21, 2010 4:53:26 PM)
'they had me on 8% o2 always 100%

pete46 (Feb 21, 2010 4:55:30 PM)
back

westjlittle (Feb 21, 2010 4:55:47 PM)
jim are you on any oxygen?

CRIS (Feb 21, 2010 4:56:10 PM)
when do you see the infection doctor?

westjlittle (Feb 21, 2010 4:56:26 PM)
monday

Jim_VA (Feb 21, 2010 4:56:27 PM)
weaned me before i went home

pete46 (Feb 21, 2010 4:56:58 PM)
celtics are down 15 now :(

Jim_VA (Feb 21, 2010 4:57:17 PM)
no i blow 98/99

CRIS (Feb 21, 2010 4:58:16 PM)
mine varies....when I went to primary care physician, it was at 95...go figure

westjlittle (Feb 21, 2010 4:58:28 PM)
they have me on30%

westjlittle (Feb 21, 2010 4:59:36 PM)
i stay at 94% but mile high here

Jim_VA (Feb 21, 2010 5:01:25 PM)
i have a big oxygen tank in arlington

CRIS (Feb 21, 2010 5:01:49 PM)
right now I have an oximeter on and it is at 92

Jim_VA (Feb 21, 2010 5:03:05 PM)
/for emergencies

Jim_VA (Feb 21, 2010 5:03:58 PM)
wow low

westjlittle (Feb 21, 2010 5:05:10 PM)
seems ok for here...

CRIS (Feb 21, 2010 5:06:58 PM)
I am at 3200 feet

pete46 (Feb 21, 2010 5:07:34 PM)
well everybody, i am going to go eat dinner and watch us mens curling vs breat briton,

pete46 (Feb 21, 2010 5:07:52 PM)
good luck jim, i hope you get home soon.

westjlittle (Feb 21, 2010 5:07:55 PM)
bye

Jim_VA (Feb 21, 2010 5:08:03 PM)
gets dangerous at 88

pete46 (Feb 21, 2010 5:08:26 PM)
did you tell jim and cris how they switched your food and it added to the diahrrea problem?

CRIS (Feb 21, 2010 5:08:26 PM)
good nite all...enjoy your sports

pete46 (Feb 21, 2010 5:08:35 PM)
bye

westjlittle (Feb 21, 2010 5:09:18 PM)
no but true

Jim_VA (Feb 21, 2010 5:10:34 PM)
] that could make a difference

westjlittle (Feb 21, 2010 5:10:44 PM)
they put me on peptamen

Jim_VA (Feb 21, 2010 5:11:45 PM)
bye pete]

CRIS (Feb 21, 2010 5:11:47 PM)
hope you feel better, jim....take care jim...VA

CRIS (Feb 21, 2010 5:11:54 PM)
(This user has left DigiChat)

westjlittle (Feb 21, 2010 5:12:59 PM)
fewer episodes now that i am back on ensure

Jim_VA (Feb 21, 2010 5:17:09 PM)
that is good

Jim_VA (Feb 21, 2010 5:19:35 PM)
what are your vent settings

westjlittle (Feb 21, 2010 5:20:51 PM)
i need bedpan gotta go

westjlittle (Feb 21, 2010 5:21:45 PM)
im later on yahoo

westjlittle (Feb 21, 2010 5:21:48 PM)
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Jim_VA (Feb 21, 2010 5:22:09 PM)
that could make k

Jim_VA (Feb 21, 2010 5:22:23 PM)
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pete46 (Feb 21, 2010 5:43:34 PM)
(This user has moved to Young Adults with MD)