Thursday, August 27, 2009

3rd IVIG "Are you getting better yet?"

Well, here it is Thurday and I'm finally up to posting about Sunday. Honestly, it's been a very hard week. Friends are starting to ask, "Are the IVs working yet?" and I'm just not sure how to answer that. I've only had 3 out of 12-24 so far. The IVs themselves have been pretty rough and my arms look like bruised hamberger since it's taking 2-3 nurses nearly half an hour each week to find a good vein that will accept a needle and not end up bursting once the needle is in. (I ususally am complimented by lab techs on my great veins and easy pokes, so this is really strange.) They have ordered a PICC line (sort of a deep-vein IV administered via local anestesia and ultrasound and kept in until the whole course of treatment is finished) before Sunday's treatment but we are waiting to see if the insurance approval and scheduling all come through on time.

I had a bit of a reaction to last week's IV - tight chest, burning throat, hurting and slightly swelling tongue on top of the normal nausia and general sense of "icky" I feel during a treatment - but will be taking benadryl with each treatment from now on, so hopefully we can keep moving forward with them. The one thing I have amazingly and thankfully not had to deal with during either of the past 2 treatments has been a headache; what a welcome relief after the doozie I had during my first treatment! This morning is the first morning all week when I haven't felt like I had been hit by a truck when I tried to wake up. When I say "feel like I was hit by a truck," that's not an exageration or figure of speach. On Monday morning I felt so much pain, so much exhaustion and heaviness in every part of my body, so much swelling an puffiness in my face making it hard to even open my eyes, pounding headache, and still such a raw and burning throat, now accompanied by a dry cough and lingering heavy/tight chest, that I honestly could not imagine that being hit and thrown by a moving vehicle could have felt any more difficult!

This morning I'm certainly not feeling "great" but I am feeling functional for the first morning all week. I'm in some pain, but not too bad, and I don't feel like I have a heavy cloud hanging around my head like I have every morning so far this week. I can open my eyes all the way without causing more pain and I seem to have a measure of energy that is a welcome relief! Afternoons, overall, have been better than my mornings this week, so if I'm starting out today on a better note to begin with, I am quite hopeful that I will have some good portions of the day today, tomorrow and Saturday before having to start all over again with Sunday's IV.

I guess if we are trying to measure immediate results from the IVs, that may be saying something, as I normally couldn't go from a "hit by a truck" morning (though this Monday's "hit" was much worse than anything I've normally experience when I've used that statement more figuratively in the past) to functional enough to start a new homeschool year with my kids that same afternoon. I couldn't normally have a Monday (and Tuesday and Wednesday) like I've had and actually wake up to a Thursday like today. So yes, I guess we must be making some form of progress so far, but it is definately coming at a price.

New to my blog and not sure what I'm even talking about here? Check out my recent post Will You Help Me Dance? (fighting CFS). A couple other helpful posts are my article on Coping With Crisis on Top of Chronic and information on the upcoming National Invisible Chronic Illness Awareness Week where I will be one of 20 speakers for a virtural conference Sept. 14-20. Thanks for taking a moment to check out these links! :)


Jeanne said...


I'm glad you are feeling better today than earlier this week.

I'm sorry they are having such trouble finding good veins and I'm REALLY sorry about the reaction you had. That sounds scary... especially the swelling tongue part.

So your doctors know about the reaction symptoms you had? I hope the Benedryl is enough to prevent trouble. That's alarming.

I hope the IVs are helping and that you won't have any more reaction problems. I would pay close attention to those reaction symptoms so that you can have them stop treatment if needed.

Reactions aren't something to mess with, as I'm sure you know. I don't mean to sound alarmist. I'm just concerned. I hope you feel even better soon!


Jenni Saake (a.k.a. InfertilityMom) said...

Jeanne, thanks for the concern. Yes, both my regular nurse at the infusion center and my doctor are aware. My nurse was monitoring me very carefully last week and will do so again at this next infustion. :)

Anonymous said...


Thinking of you and praying you are growing stronger.