Monday, February 22, 2010

Stopping IVIG

There were only two left, but after 22 IV infusions, I just can't do it anymore. My body is done in, overtaxed, highly reactive. In the past 3 weeks I've had about 14 days where I haven't been out of bed more than 1-4 hours per 24, most of those days were in the range of 1-2 total "up" hours taken in short chunks throughout the day. Hives won't stay calmed. I'm short of breath and wake up struggling to breath at all. I'm in pain. I'm exhausted.

For whatever benefit the IVIG might offer, for me the cost of ongoing treatment is just too high. What good does it do me to avoid illness (i.e. viruses, bacteria, etc.) if the reaction to the treatments is illness (bedridden days, hives, breathing scares)?

I just got off the phone with my primary care doctor's office and with her blessing, I will be calling the infusion center to cancel my last two IVs! I don't think the reality has really hit me yet, but I'm so relieved that this chapter of the journey is over. I still have insurance approval for two more infusions, so if at some point down the road we see a reason that I should go back for another treatment or two, that remains a viable option, but at the moment it isn't in the plans at all.

I'm not quite sure where we will go from here, but for now I'm just going to work on being still and trying to get my feet back under me so that I can pick up a semi-normal pace of real life again. Thank you for all the cheer-leading, love, encouragement, support and prayers as you have come along side me through this entire IV adventure that started way back last August. It's been a very long journey and I have a whole new level of understanding and compassion for those who live with these kinds of treatments on a continual basis.

It still doesn't seem real, but I'll write it again in hopes of making myself believe it - I'm done!!! :D


Anonymous said...

Oh, my friend, I am happy to "hear" a lilt in your "voice" when you speak of going forward in your future. That is a good thing. You know I am praying!

Heather said...

It is so hard to make such a difficult decision. I am glad that you feel at peace with such a big decision. I hope you return to your "normal" soon.
love & support.

Hannah said...

I'll be praying for you! Take care!

Anonymous said...

Jenni, you have been through so much. I'm glad that you can have peace with this decision and look forward to moving on. I think of you often and you are in my prayers.


Lori said...

Prayers that the end will be the beginning to many good things!!!!