Dear Friends and Family --
Gosh, I have been remiss in writing. Thanks to Uncle Bob Nicolazzi for prompting me for an update.
It has been a bit of a roller coaster ride. 4 weeks ago the protein in the urine was suddenly in a normal range! Only 200 (less than 500 is normal). We couldn't believe it - and yet Craig felt lousy. Short of breath, plugged ears, raspy voice, no energy - not enough stamina to even carry on a conversation. Good friend and fellow Mohns surgeon Glenn Goldstein had planned to fly out from Kansas City Halloween weekend to give moral support but Craig was not up to it.
The nephrologist started him on Cellcept, a drug which suppresses the immune system in hopes of making the B-cell lymphocytes behave as they reconstitute.
2 weeks ago the protein in the urine back up to the very abnormal level it had been for the last 8 months, around 8,000. Very discouraging of course.
I nervously took a quick trip to Wisconsin to see family, and when I returned after Halloween, suddenly Craig looked better - his color, voice, hearing, and energy all improved. It was as if someone turned a switch overnight. Appointment with the nephrologist last Friday confirms that urine protein better (down to 2500) and best of all, serum albumin up to 3.1 (had been 1 for many months). B-cell level is zero, so the 2 Rituxan infusions mid Sept did their thing. Craig also took another empiric 2 wk course of Biaxin in October. Hard to know which of these things is working for sure, though I think it is probably the Rituxan.
Craig is feeling better enough that we are going to attempt a Thanksgiving trip to Iowa and a Christmas trip to Wisconsin.
His weight had gotten to a low of 149# 3 wks ago, but now is up to 157#(He was 212# before all this started). I told him he could start wearing Nick's skinny jeans - imagine that! Craig will be easy to buy for this Christmas because he needs an entirely new wardrobe. He's been keeping his pants up with suspenders, but that doesn't work so well for the underwear :)
So the journey continues. It is hard to see the silver lining in all of this, for sure. I need the optimistic Birkbys to show me the way on that one.
Love to you all, Sharon
Yay for updates, new wardrobes, holiday travel plans and 3.1 serum albumin!
ReplyDeleteSo glad to hear happy news. We look forward to your holiday arrivals!
ReplyDeleteRuthann and family
Thanks for the update, Sharon! I am thankful to hear Craig is feeling better, as this holiday comes upon us. You are so strong in the face of this challenge - a great lady and an amazing family. Prayers continue for you!
ReplyDeleteyes, thanks .. you are strong ... and brave. (Iowa in Nov and Wisconsin in Dec. really? I won't do that and I'm in good health)
ReplyDeleteHello, from a patient who has you and your family on her radar, bigtime. I learned today from one of your colleagues, Danniel Berg, M.D., at the UDub that you were keeping a blog. I am rooting, sending thoughts of white light and good care and just putting in my two cents worth of strength and support. With every good wish that can be mustered. Lynn Rosen
ReplyDeleteHello Birkby Family,
ReplyDeleteI've been thinking a lot about you and wondering how Craig is doing. So glad you were able to spend the holidays with family. I'm sure you enjoyed your time together so much. With holiday travel and kids transitioning back to school I'm sure you’re both very busy but I will take the 'no update since November 15th' as a sign that all is continuing to improve. Hugs to all and Happy New Year!!
-- Melody