there was no sleep last night, what was I thinking.
between the clanging in the halls, my roomies tv, the bright lights in the hallway, my machine beeping its alarm all night long(I guess thats why they infuse while youre awake, so the machines alarm doesnt wake you)
the few patients on the floors screaming for nurses, crying, whatever, I felt bad for them. but sleep was impossible. I guess 5 days of sleep deprivation will really see if my eyes are myasthenic or not.

Can you close your door overnight? That's what I did when I was in the hospital last month for 11 days. I also took some ear plugs with me (the kind you squeeze and when you put them in your ears they expand). This helped greatly in blocking out some, not all, of the noise. I got them at Wal-Mart.

Now that you're finally there, you can count down the days til you get to go home.

Hey Allen,

Glad you're finally there and so far so good. You may find yourself so tired from the stress and lack of sleep, that you'll actually be able to sleep through most of the noise and lights tonight. I hope it continues to go well and you get great results. Hope the foods decent. Keep us posted, we're all pulling for you.

Hugs,
Pat

the nursing staff here is fantastic. they are considerate, respond quickly, and answer any questions or get the answers quickly.
I dont really bother my nurses, other than ring them as they instructed me too if the iv machine starts to beep., seems the ivig soup has a tendency to have tiny bubbles, and the machine is so sensitive, it stops and its alarm goes off when it detects tiny air bubbles.
I tried to get the doctor to infuse my next dose early today, he said hed like to, but the staff wont infuse at least for 6-8 hours after finishing first dose, something like that, so I have to wait, she just informed me 4 pm today it starts.
I feel fine, a bit of stomach upset, not sure if its the ivig, and after bloodwork today, around 6am, I passed out for an hour or so, felt good to sleep.the last 5cc of solution woke me up beeping.
Im just documenting how I feel at the time while im here.

patient relations just came in to make sure everyone was treating me ok, they were impressed I knew all my nurses names on all shifts.
I feel when a nurse is shooting stuff into my viens, its good to know her name.
btw, they also stuck a heparin syringe into my belly this morning so no clots. not as bad as it sounds for any scardey cats. Just the tip under the skin, hardely felt it, sounds so much worse when she says i have to inject this heparin into your belly.
reporting live,hope youre all having a wonderful day.
I didnt eat much, my wife says the food was pretty good.
they off many alternatives to their menu, like cold sandwiches for lunch, mashed, baked instead of what they have on menu. and so on.

I think they gave me heparin in my IV -- or maybe that was with PEX -- can't remember -- I do remember it gave me a nasty taste in my mouth. Isn't somebody (a nurse) sitting with you during the infusion?

I was watched constantly -- with bp taken every 15 minutes. My machine had the bubble problem, too -- the nurse was on a rolling stool -- there were three of us -- she thumped our IVs quite a bit.

You NEED to eat so that you will DRINK. DRINKING is key to NOT getting the headache. If you don't like water, drink SOMETHING -- maybe weak tea!! You also need to keep your kidneys working!!!

Sorry, not trying to be bossy -- just want you to have the BEST chance at a GOOD outcome!!

Hey Allen,

You sound like you are in much better spirits today! Nice to hear you have great nurses too. Don't want to be pushy, but do try to eat. It will not only help you to keep up your strength, but will help prevent you from feeling nauseous. And, drink, drink, drink! You don't want to run the risk of getting one of those nasty headaches others have taked about. I had those shots too when I was in the hospital a few months back. They didn't hurt, but the huge purple bruises they caused took 6 weeks to fade. Hang in there, we're all pulling for you.

Hugs,
Pat

Ohhh I hate getting the heparin shots! I am so glad you got in and your attitude is sounding happier and happier Remember to drink a lot of water. I am enjoying your updates, please keep them coming!

Now try and get some sleep.

A lot means at least 1.5 liter per day...
Maurice.