Allen,

Let it out.. thats what we are here for. I remember when I was going to have my thymectomy they did the same thing, sit by the phone and wait!

We know how stressful it can be, but I hope when they do call the IVIG helps you.

Please continue to keep us updated

Its obvious myasthenia and IVIG treatment are not regarded as any type of priority in a hospital setting.
Im a bit turned off knowing this before I go in, since I cant imagine any of the nursing staff or other staff having much regard for this type of thing either, since patients are given last priority on admittance.
Im now discouraged as to the care and respect I will receive as a patient, and trust me, I need very little of either to make me feel welcome.

Hi Allen,

I kind of know what you mean, when I questioned the chair I would have to sit in all day, as I was only a day patient, they said "well it lays right back"
I just said "uh hu" they obviously have never known anyone with mg, cos sitting in a chair can be very tiring. I did try to explain this but to no avail.
The nurse who looked after me was however very nice and caring, couldn't fault her at all, and she did understand when I explained, but said she was powerless.
If I have medical insurance however, I'm sure in a private hospital I would get a bed!

I hope your experience is better than what you expect.

I have not heard anything yet, its 11:40 am, just posting the update.

tick tock, tick tock, 1:30 pm and I know they realize they are in the highest volume traffic area in the NE. In 30 minutes, traffic could take me over 2 hours to get there, Im sure they realize this.
Im uptight and uncomfortable, not good to go in for this kinda stuff.

Allen

As I said before I understand your frustration, just remember the madder you get the worse it is for you. I know it is stressful but try and look at is as a mini vacation {dumb I know} but it works for me

I hope they call soon.

got here at around half past 3
had some issues with the ekg, actually still wearing the pads
didnt start ivig until almost half past 9
I cant see my keyboard, Im typing in the dark and Im not that good, so please understand no colons or semicolons, dont know where the key is.
about 45 minutes of infusion, not feeling anything, so I guess that is good.
pre medicated with tylenol and benadryl, but the hospital does not stock my other medications, so its a good thing I brought my own, the nurse got it approved.
other than that, its very loanly. I pursuaded my family not to bother coming up today other than my wife tkaing me here. I dont want to burden anyone.
joanmarie, vacation..........not for me, this is more like a prison sentence.
Im hoping this works, cause I know this will be torture for me for 5 days.
Ill report if anything gets icky.
other than that, it seems pretty easy so far.

Hey Allen,

I'm glad that the IViG isn't too bad...Make sure that they don't run the infusion too quickly...200 is too fast...I passed out from the benedryl a couple of times, and woke up to see that they were running it @ 300 at one point...I got the mother of all headaches after...

It is lonely...Do they have those little tvs with movies? The place I go to has those, and they definately help to pass the time...

Keep us posted on your progress!

Nicky

the rate states 40, orginally was aet 30
thankgod I can use my laptop, and say hi to all my friends.hour and half in, nothing, feeling good, sleeping pill starting to kick in, maybe Ill give sleep a shot.my son put 6 movies onto my laptop and gave me his sony soundproof headset, hes a good kid.I have some books with me when My eyes feel strong.

Allen, I'm glad you finally got in. I understand your trepidation. I've never had IVIG but it seems like sausages to me - I really wouldn't want to think too much about what's in it. And it's scary to have anything done or put into your body. And then there's the needles. Ugh.

But I have seen people rave about the results, so I'm crosssing my fingers and hoping that you get great results and no bad side effects.


Ally