Another Update!

Well, as most of you know, I started my second round of the IVIG
infusions last week, but after the first day got so sick I had to cancel
the second days infusion. Ended up at my pcp's and he gave me
compazine, antibiotics (for an ear infection) and also an injection of a
large dose of rocephin to try to keep me from getting any sicker. He
also tried to call the immunologist about the side effects I was having
with the infusions, but she wasn't in that day.

Well, I went in for the second day of infusions yesterday and knew
immediately that my pcp had made contact with the immunologist because
as soon as I got back to the infusion room, the nurse started inquiring
as to how I was feeling was I still having trouble with nausea, how long
were the side effects lasting, etc.
They decided that they were doing the infusions too fast and so slowed
that down considerably. They also gave me something called Zofran
before hand to help with the nausea. I am not familiar with this med at
all. They told me they would not be giving me an antihistimine before
hand anymore, as they would instead be giving me something for nausea
that should also kind of act like an antihistimine. They made sure I
drank a lot more fluids while I was there, made sure I had something to
eat while there, and gave me stric instructions to call them today to
let them know if I was having any side effects at all, and if so, what
kind. They also told me there are other things they can try to help
reduce the side effects including trying a different brand of the IVIG
if necessary. They asked why I hadn't said anything about getting so
sick after the infusions. I told them that they had given me the list
of side effects before we started the infusions and I just figured that
this was all part of the game plan. I wasn't even getting the worst of
the listed side effects. They said they always need to know about all
side effects no matter how small they may seem to me.

OK, so had infusion yesterday, I did get the blinding headache again,
but just got a little queasy today, not the constant nausea and throwing
up like last week! Yay!!! Talked to the nurse this morning and she
said they would work harder still at getting the side effects to still
be less for the next round. That sure would be nice.

I'm soooooo thankful for my pcp making that phone call and talking to
the doctor and letting her know just how rough things were getting and
even more thankful that they can do some things to help with the nasty
side effects!!! Woooohoooo!!!! I was about ready to throw in the towel
with these infusions.

Will see how round three goes next month!

..
..
..
..

Donna
..
..
..
..
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......


2.) J.K.M.A.

Thank you for the detailed update,,,,, These doctors are suppose to work
together. I wish they all did as well as yours.
Harv

"Donna G." <DKGBeeker@webtv.net> wrote in message
news:27233-47B3F61B-181@storefull-3111.bay.webtv.net...
>
>
>
> Well, as most of you know, I started my second round of the IVIG
> infusions last week, but after the first day got so sick I had to cancel
> the second days infusion. Ended up at my pcp's and he gave me
> compazine, antibiotics (for an ear infection) and also an injection of a
> large dose of rocephin to try to keep me from getting any sicker. He
> also tried to call the immunologist about the side effects I was having
> with the infusions, but she wasn't in that day.
>
> Well, I went in for the second day of infusions yesterday and knew
> immediately that my pcp had made contact with the immunologist because
> as soon as I got back to the infusion room, the nurse started inquiring
> as to how I was feeling was I still having trouble with nausea, how long
> were the side effects lasting, etc.
> They decided that they were doing the infusions too fast and so slowed
> that down considerably. They also gave me something called Zofran
> before hand to help with the nausea. I am not familiar with this med at
> all. They told me they would not be giving me an antihistimine before
> hand anymore, as they would instead be giving me something for nausea
> that should also kind of act like an antihistimine. They made sure I
> drank a lot more fluids while I was there, made sure I had something to
> eat while there, and gave me stric instructions to call them today to
> let them know if I was having any side effects at all, and if so, what
> kind. They also told me there are other things they can try to help
> reduce the side effects including trying a different brand of the IVIG
> if necessary. They asked why I hadn't said anything about getting so
> sick after the infusions. I told them that they had given me the list
> of side effects before we started the infusions and I just figured that
> this was all part of the game plan. I wasn't even getting the worst of
> the listed side effects. They said they always need to know about all
> side effects no matter how small they may seem to me.
>
> OK, so had infusion yesterday, I did get the blinding headache again,
> but just got a little queasy today, not the constant nausea and throwing
> up like last week! Yay!!! Talked to the nurse this morning and she
> said they would work harder still at getting the side effects to still
> be less for the next round. That sure would be nice.
>
> I'm soooooo thankful for my pcp making that phone call and talking to
> the doctor and letting her know just how rough things were getting and
> even more thankful that they can do some things to help with the nasty
> side effects!!! Woooohoooo!!!! I was about ready to throw in the towel
> with these infusions.
>
> Will see how round three goes next month!
>
> .
> .
> .
> .
>
> Donna
> .
> .
> .
> .
> 1.) ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
>
> 2.) J.K.M.A.
>

thank goodness for small miracles Donna - hopefully they will be even better
next month. Been thinking of you.

Kelly

"Donna G." <DKGBeeker@webtv.net> wrote in message
news:27233-47B3F61B-181@storefull-3111.bay.webtv.net...
>
>
>
> Well, as most of you know, I started my second round of the IVIG
> infusions last week, but after the first day got so sick I had to cancel
> the second days infusion. Ended up at my pcp's and he gave me
> compazine, antibiotics (for an ear infection) and also an injection of a
> large dose of rocephin to try to keep me from getting any sicker. He
> also tried to call the immunologist about the side effects I was having
> with the infusions, but she wasn't in that day.
>
> Well, I went in for the second day of infusions yesterday and knew
> immediately that my pcp had made contact with the immunologist because
> as soon as I got back to the infusion room, the nurse started inquiring
> as to how I was feeling was I still having trouble with nausea, how long
> were the side effects lasting, etc.
> They decided that they were doing the infusions too fast and so slowed
> that down considerably. They also gave me something called Zofran
> before hand to help with the nausea. I am not familiar with this med at
> all. They told me they would not be giving me an antihistimine before
> hand anymore, as they would instead be giving me something for nausea
> that should also kind of act like an antihistimine. They made sure I
> drank a lot more fluids while I was there, made sure I had something to
> eat while there, and gave me stric instructions to call them today to
> let them know if I was having any side effects at all, and if so, what
> kind. They also told me there are other things they can try to help
> reduce the side effects including trying a different brand of the IVIG
> if necessary. They asked why I hadn't said anything about getting so
> sick after the infusions. I told them that they had given me the list
> of side effects before we started the infusions and I just figured that
> this was all part of the game plan. I wasn't even getting the worst of
> the listed side effects. They said they always need to know about all
> side effects no matter how small they may seem to me.
>
> OK, so had infusion yesterday, I did get the blinding headache again,
> but just got a little queasy today, not the constant nausea and throwing
> up like last week! Yay!!! Talked to the nurse this morning and she
> said they would work harder still at getting the side effects to still
> be less for the next round. That sure would be nice.
>
> I'm soooooo thankful for my pcp making that phone call and talking to
> the doctor and letting her know just how rough things were getting and
> even more thankful that they can do some things to help with the nasty
> side effects!!! Woooohoooo!!!! I was about ready to throw in the towel
> with these infusions.
>
> Will see how round three goes next month!
>
> .
> .
> .
> .
>
> Donna
> .
> .
> .
> .
> 1.) ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......
>
>
> 2.) J.K.M.A.
>

you sure are a good sport, donna.
hang in there,

diane

Good to hear they are taking the side effects seriously and helping you with
that Donna.

I hope all works better for the third one. Keeping you in my thoughts.

--
Love and Hugs to all
Jo the squirrely one
I am nuts about you.
>
> Well, as most of you know, I started my second round of the IVIG
> infusions last week, but after the first day got so sick I had to cancel
> the second days infusion. Ended up at my pcp's and he gave me
> compazine, antibiotics (for an ear infection) and also an injection of a
> large dose of rocephin to try to keep me from getting any sicker. He
> also tried to call the immunologist about the side effects I was having
> with the infusions, but she wasn't in that day.
>
> Well, I went in for the second day of infusions yesterday and knew
> immediately that my pcp had made contact with the immunologist because
> as soon as I got back to the infusion room, the nurse started inquiring
> as to how I was feeling was I still having trouble with nausea, how long
> were the side effects lasting, etc.
> They decided that they were doing the infusions too fast and so slowed
> that down considerably. They also gave me something called Zofran
> before hand to help with the nausea. I am not familiar with this med at
> all. They told me they would not be giving me an antihistimine before
> hand anymore, as they would instead be giving me something for nausea
> that should also kind of act like an antihistimine. They made sure I
> drank a lot more fluids while I was there, made sure I had something to
> eat while there, and gave me stric instructions to call them today to
> let them know if I was having any side effects at all, and if so, what
> kind. They also told me there are other things they can try to help
> reduce the side effects including trying a different brand of the IVIG
> if necessary. They asked why I hadn't said anything about getting so
> sick after the infusions. I told them that they had given me the list
> of side effects before we started the infusions and I just figured that
> this was all part of the game plan. I wasn't even getting the worst of
> the listed side effects. They said they always need to know about all
> side effects no matter how small they may seem to me.
>
> OK, so had infusion yesterday, I did get the blinding headache again,
> but just got a little queasy today, not the constant nausea and throwing
> up like last week! Yay!!! Talked to the nurse this morning and she
> said they would work harder still at getting the side effects to still
> be less for the next round. That sure would be nice.
>
> I'm soooooo thankful for my pcp making that phone call and talking to
> the doctor and letting her know just how rough things were getting and
> even more thankful that they can do some things to help with the nasty
> side effects!!! Woooohoooo!!!! I was about ready to throw in the towel
> with these infusions.
>
> Will see how round three goes next month!
>
>
> Donna

Diane,


Don't know that I'm much of a good sport. I had told my pcp last week,
that I didn't know if I could deal with these infusions for the rest of
my life and the side effects. Told him I'd rather take the chance of
getting sick more often than dealing with these infusions and such. I
am very blessed though to have great doctors who really do care and who
work well with each other and don't have a problem calling one another.
I am soooooo thankful beyond words to my pcp for making that phone call
and letting the immunologist know just how sick I was getting---he
certainly saw with his own eyes last week when I was sitting in his
office looking like death warmed over. God bless my pcp and all truly
caring and compassionate doctors!!! That is one area I am more than
blessed with!!!

..
..
..
..

Donna
..
..
..
..
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......


2.) J.K.M.A.

"Donna G." <DKGBeeker@webtv.net> wrote in message
news:16561-47B4CF0D-296@storefull-3116.bay.webtv.net...



Diane,


Don't know that I'm much of a good sport. I had told my pcp last week,
that I didn't know if I could deal with these infusions for the rest of
my life and the side effects. Told him I'd rather take the chance of
getting sick more often than dealing with these infusions and such. I
am very blessed though to have great doctors who really do care and who
work well with each other and don't have a problem calling one another.
I am soooooo thankful beyond words to my pcp for making that phone call
and letting the immunologist know just how sick I was getting---he
certainly saw with his own eyes last week when I was sitting in his
office looking like death warmed over. God bless my pcp and all truly
caring and compassionate doctors!!! That is one area I am more than
blessed with!!!

you are blest, but then, you are also a blessing. i'm so glad that your
doctors take such good care of you (interface and integrate) and care about
you. it's a tough road you are on, sweetie. but you travel it with so
much grace, my friend.

kate

..
..
..
..

Donna
..
..
..
..
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......


2.) J.K.M.A.

Donna,
I'm glad to hear things are looking better for you and that your doctors
are working together to get a handle on how to treat you.
That nausea and vomiting is something that just can't go on because it
lays you low.
Prayers will continue that the infusions become easier.
Ann

On Thu, 14 Feb 2008 3:04:43 -0500, Donna G. wrote
(in message <27233-47B3F61B-181@storefull-3111.bay.webtv.net>):

> 1.) ANGELS EXIST, but some times, since they don't all have wings, we
> call them FRIENDS......

and in your case, sometimes they are your doctors!

i think it's such a common problem with those of us who have chronic
illnesses to not complain about side effects until they become unbearable.
we are just too accustomed to feeling lousy and to just sucking it up! your
sory reminds us all to report everything, even when we think it is normal.
now, i'm praying they eliminate that headache next time. when is your next
roud of infusions?

--
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Hi Nann,


Next round of infusions is the first week of march, and I am already
dreading them. Ugggh, I hope they can get things bettered controlled
as I don't want to go through this every single month.

..
..
..
..

Donna
..
..
..
..
1.) ANGELS EXIST, but some times, since they don't all have wings, we
call them FRIENDS......


2.) J.K.M.A.