Hi all,

Ok I'm on my soapbox!

Well I started my IVIG on Monday, that day went great. I felt so much better Monday night, then I went Tuesday, and this is how it went. They started me out at 50 and then went to 100 all within an hour. Then she bumped it up to 150 for the remaining 3 hours. Everything went fine while I was there....but after I got home, things changed quickly. The headache was there with a vengeance and the muscle aches were there too. I drank 150 oz of water too within the 24 hours prior to my ivig.

So today is Wednesday and I had a new RN. I told her I didn't want to go over 100......her comment....well it's going to take a long time....MY THOUGHTS....WHO CARES??????.........I'M THE ONE TO SUFFER NOT YOU! (I didn't say that out loud but I thought it!) Anyway, I refused to let them do it faster and I tolerated it great....So at the very end of my bottle with only about 5 minutes left...she comes in to take my vitals and says..."I'm going to speed this up for this minute to finish out..." SHE SPED IT UP TO 300 ml!!!! When she did that....I could even taste it in my mouth!!! What's up with that....has this ever happened to any of you?

I've got news for those people, heck...I'm the patient and I have rights and you bet tomorrow....I WILL RULE......!

Now I feel better...heehee

So glad the IVIG is helping. I know that I have to medicate myself after the IVIG with pain meds if I feel the slightest headache coming on to combat it. Also I take benadryl the nights I have IVIG to counteract any side effects from the IVIG. I also have issues with nausea and have meds to work with those side effects. You just have to try and catch any side effects before they start when you get home from the IVIG after the treatments. It has worked for me and I hope it works for you. I agree, you have to tell the nurses how you are feeling and take care of yourself first and don't be in any hurry. Each of us is different and don't always fit into a certain schedule for the infusions. Best wishes for your next IVIG.
Hugs,
Simon

Next time don't hold back! Make sure the nurse knows YOU know what is happening and YOU know what is best for you. I don't understand why she was in such a hurry other than maybe she wanted to take a break.

I am glad the IVIG is helping you.

Good to hear it's working for you! Hope it goes somoothly for you today. Take care.

Hugs,
Pat

The infusion clinic I get my IVIG in is very small (4 chairs) and even though they really try to schedule everyone far enough apart, there are times there are people sitting the lobby waiting for their turn.

I can tolerate 200 pretty well, but I know there are others who cannot go over 100. They do schedule extra time for those individuals.

Maybe they'll give you more time in the appointment calendar next time since you can't tolerate it very fast.

Just a suggestion, it helps if you premedicate with benedryl and tylenol (or your pain med of choise)

Good luck - I don't know what I would do without my IVIG - it has been a life saver.

I fully agree with that.

you are the one that will eventually have to deal with it, and they will happily go home at the end of the day, leaving all the diseases in the hospital.

when we were in med. school, there was this saying -"the patient is the one with the disease", which basically meant don't get too much emotionally involved, it is not you that have to suffer.

I now understand the other and more true meaning of this sentence- "the patient is the one with the disease"-the one that lives with it every day, and not only briefly encounters it in his office or reads about it in his book, the one that has to suffer the results of medical errors, the one that will gain from proper treatment, and therefore the one that knows best.

alice

Hey hon! Good for you!

I think it was AWESOME that you spoke up for yourself like that - most people are too afraid - even though it is THEIR body that is being abused!

As for me, I thought that bumping it up (AKA doubling it) every 15 min was the norm. They have always done that to me and I have never had any ill side effects. I was up to 320 @ one point, but Dr. I had them reduce it to 240 MAX from here on out - just to avoid future kidney/liver problems.....

Again - BRAVO! You KNOW your body and have every right to tell them to stick it where the sun don't shine!

Love,
Erin

Thanks all...

Erin....haha....I like your take on things! heehee

Today went really well. They do premed me with tylenol and benedryl but.....I'm not feeling really great right now. I guess sometimes it takes days for this stuff to kick in?????

Jujuan

BTW....I have a great nurse today....a male!!!! He treated me like a queen!

Nurses aren't perfect either. It is your RIGHT as a patient to have it done the way you need it and want it. NO ONE has the right to do something against your will in medicine. Unless there's a "hold" order when you are considered a threat to yourself or others or when there's a court order telling you to have chemo or . . .

Glad it's going better.