Monday, March 9, 2015

An Update to the Update

Time for an update to last week's kidney update

When I posted last week we were heading to the nephrologist hoping for some more answers about what the heck is going on with my body. Unfortunately, my kidneys can't talk so we still don't know exactly what they're doing, but we do have a new plan of action. 

My doctor's biggest concern is that I am becoming dependent on the steroids and they are no longer working. For those of you who have been on steroids for any amount of time, you know they can do some cuckoo things to your body in both the short and long term. I've been on and off them for almost four years and in that time they've wrecked havoc on me. The side effects have not been nearly as bad as some others have seen, but they haven't been entirely pleasant either. So, the first thing we're doing is beginning to taper the steroids in hopes of weaning me off them entirely in the next few months. Praise! But the weaning process comes with a price-another medication.

Starting this week I will begin taking a medication called cytotoxan. The hope is that I will take this very powerful chemotherapy drug for a short amount of time (8-12 weeks) and that will help prevent my kidneys from relapsing again. And yes, you read that correctly, it is a chemo drug.   There is another drug option but that one would take at least a year which means at least a year of continued steroids as well. 

There are obviously a lot of side effects that come with this but when we spoke with my doctor, and spent time in prayer, we decided this was the best course of action. What's hardest for me to wrap my brain around right now is that I'm going to have to stop breastfeeding Amelia Grace as the medicine could possibly be passed to her through the milk. 

We continue to ask for prayer for this transition both physically, mentally, and emotionally. We fully believe that God is working in me and in this situation and are hopeful to see how it all works out!


  1. Still praying. SO much to deal with but you are showing great faith!

  2. So much love, so many prayers, and all hopes that this new drug will "do the trick" efficiently and without side effects, sweetheart!!!! As much as I know you will miss breastfeeding Amelia Grace, I know she would much rather have her mama WELL than anything else!!! I mean, have you seen the way she looks at you??? That girl is in LOVE with her, go get her mama well!!!!! God bless, your loving and adoring GrandBobbie xoxoxoxoxo