You must be feeling better! I've never had IVIG, but have been following your posts from the hospital and have appreciated you sharing your experiences. Have to say that it has taken the fear out of the process if I ever have to have it. I've had plasmapheresis though.

What would you have done without your computer to stay connected? Probably climbed the walls more than you already were.

Bon voyage on your escape later today to your home sweet home.

[QUOTE=allen
and then my nurse came into me at 11:30 and informed me the pharmacy ran out of ivig. Hello? HELLO?
its not like they didnt know its a 5 day therapy
eh, Im back to being disgusted, lets see how much they hang me now and how long it takes them to borrow some from a nearby hospital. why couldnt they borrow it last night or this morning?
disgusted level 10 out of 10[/QUOTE

Hi Allen, Thanks for filling folks in on how things like your tx really can go. The good with the horrible. Reminds me of waking up the first morning after complicated major abdominal surgery with the tech telling me they had run out of the morphine for the pump until the pharmacy opened. Un-fricking believable!

I have a bag packed at all times with the most necessary items for hospital stays. Earplugs are essential. Next is a sleep mask to throw over my eyes when the lab vampires turn on the lights at 4 Am. Throw out the arm and stay asleep after awhile. The most important is the disinfecting wipes for every surface touched regularly by myself and staff. Especially the bedside table where the lab tech often wants to put her caddy. Becomes a visiting petri soup, sharing more than a "hello good morning, can I suck up some of your blood"! Those little invisible visitors scare me. The big item is a large lightweight blanket of cotton flannel, enough to wrap around the gown toga fashion and afford some color and privacy. No sleeves to get in the way of IV lines either. If you do want to walk a bit, you want to look good too! Maybe it does not matter for guys. But a nice colored toga has a cheering effect overall. Gotta walk with attitude of course!

Sounds like you are tolerating things appropriately. Level 10 disgust is relatively normal for any tx protocol. Cannot recall any time the hospital was not fraught with the human errors and ludicrous situations. Often wondered if it was secretly part of a reality show or something. Next time you will know what to expect and it won't trigger you so much. I agree, knowing the nurses name is the best strategy. I used to greet them every time as if they were long lost friends. It was a lovely way to pretend for awhile that things were better than they actually were. And for those few moments of generosity, they were better and so was I. I guess the point is if we care about the staff, they tend to care more about us. They try harder to get it right and to please.

Sounds like you have a good sense of humor and that is always welcome. Anyway, your story is a great lesson in facing the broken system and coming out sleep deprived but better, and certainly wiser. Good for you! Good luck with everything. Maybe the patience you practiced with bring more of same once you are home. Tends to work that way. Best Wishes TT

I know Ill be home in time to watch peyton show the world why hes probably the best quarterback in nfl history.
I never would have made it without my laptop.
I didnt know they allow them until I read a post by erin when she went in for ivig, so thats when I thought about it.
I hope you all are feeling well.

[QUOTE=tinglytoes;611128][QUOTE=allen
and then my nurse came into me at 11:30 and informed me the pharmacy ran out of ivig. Hello? HELLO?
its not like they didnt know its a 5 day therapy
eh, Im back to being disgusted, lets see how much they hang me now and how long it takes them to borrow some from a nearby hospital. why couldnt they borrow it last night or this morning?
disgusted level 10 out of 10[/QUOTE

Hi Allen, Thanks for filling folks in on how things like your tx really can go. The good with the horrible. Reminds me of waking up the first morning after complicated major abdominal surgery with the tech telling me they had run out of the morphine for the pump until the pharmacy opened. Un-fricking believable!

I have a bag packed at all times with the most necessary items for hospital stays. Earplugs are essential. Next is a sleep mask to throw over my eyes when the lab vampires turn on the lights at 4 Am. Throw out the arm and stay asleep after awhile. The most important is the disinfecting wipes for every surface touched regularly by myself and staff. Especially the bedside table where the lab tech often wants to put her caddy. Becomes a visiting petri soup, sharing more than a "hello good morning, can I suck up some of your blood"! Those little invisible visitors scare me. The big item is a large lightweight blanket of cotton flannel, enough to wrap around the gown toga fashion and afford some color and privacy. No sleeves to get in the way of IV lines either. If you do want to walk a bit, you want to look good too! Maybe it does not matter for guys. But a nice colored toga has a cheering effect overall. Gotta walk with attitude of course!

Sounds like you are tolerating things appropriately. Level 10 disgust is relatively normal for any tx protocol. Cannot recall any time the hospital was not fraught with the human errors and ludicrous situations. Often wondered if it was secretly part of a reality show or something. Next time you will know what to expect and it won't trigger you so much. I agree, knowing the nurses name is the best strategy. I used to greet them every time as if they were long lost friends. It was a lovely way to pretend for awhile that things were better than they actually were. And for those few moments of generosity, they were better and so was I. I guess the point is if we care about the staff, they tend to care more about us. They try harder to get it right and to please.

Sounds like you have a good sense of humor and that is always welcome. Anyway, your story is a great lesson in facing the broken system and coming out sleep deprived but better, and certainly wiser. Good for you! Good luck with everything. Maybe the patience you practiced with bring more of same once you are home. Tends to work that way. Best Wishes TT[/QUOTE]

its amazing how patients here dont take showers. alot of these people are here for weeks, and unless the staff takes them into bath or bed bathes them, they wont. Me, Im so self conscience, I have wipeys for everything.
I wont use the hospital toilet paper or touch the roll even.
I made the cleaning staff go in front of my eyes and clean my shower stall out with detergent, even though I walked in with flipflops.
You need a doctors order as Im sure you know to shower.
You need a doctors order for anything except a dukie.
dukies are allowed and encouraged.

Last night, without any lines connecting me finally, since I finished at around 10, and wouldnt start again till 5 am, I slept like a baby, woke up once with fire alarsm but went back to sleep till I was woken up for blood and my iv line at 4:30

I hate to give myself a canary but Im down to less than 220 cc to go, at 80cc per hour(hospitals max), and Im feeling very good, almost scary good.
dont know if its my excited stage since IM leaving, or if I had a good nights sleep, cause i doubt its the ivig.

btw, I walk around in kid style NY yankee sleep pants, superman pants, batman pants, the staff gets a good chuckle.Ihave my wife bring me 2 new sets of clothes each day in case I need them, hey, ya never know.
I wont wear hospital clothes.

Im sure the young nieces visiting the elderly gentleman next to would be scarred for life if I got up in a hospital gown and my tucus was hanging out for the world to see.

5:15, Im home, took a shower in my own shower, and just a bit tired, but happy as hec.

Congrats to you and welcome to your own space and wonderful bed once again. Clean and well rested will never be taken for granted again Enjoy Allen- you preservered. Big pat on the back deserved. Thanks for sharing the tale of woe and all. Best Wishes TT

OMG.. I so needed that laugh! You are the best and I am glad to see you made it home!

Allen,

Thanks for sharing your experience. I hope it was helpful.

9 hours since it came out, no difference but I am tired. and worn out,

last dose finished at 4:13 pm yesterday. I was home and showered by 5:15.
I had some company last night, did not rest, but drank a ton of water, and watched football, nothing strenous.
Now for the bad news. I woke up after a great nights sleep, feeling like I just worked 4 16 hour days in a row. Im worn out, very exhausted. Almost like I cant get out of bed, and havent left my bedroom yet. Its 9 am. I slept for 8 hours, thats pretty darn good for an insomniac like me.A good sleep.
I tried to push the limit last night, and I failed to function, maybe second time in my life, but I did feel like I had finished a marathan, and my body was just wasted.
Im pretty sure this feeling of totally washed out is normal, and I also notice a tiny slight back ache, nothing to warrant meds, just like a cramp that will go away.
Wanted to keep everyone informed, nothing bad, just like I need to spend the day resting, and I will.