Monday, February 18, 2013


It's been an incredibly long, disorganized day. 

Traffic was very light because of the holiday, the biggest blessing of our day. 

After blood work, I sent Babygirl back to nephrology to start her appointment without me.  I took her headache diary and hiked over to neurology, where I had thought we were supposed to see the doctor today but found out two weeks ago that we aren't to be seen for two more MONTHS.  I asked to see the nurse who arranged for all of her tests.  I explained the timing of the medications vs the frequency of the headaches.  I explained that although we've "improved" from almost-daily headaches to roughly every-other-day headaches, she's missing a TON of school.  I asked her to run interference for us with the doctor and try to communicate something of the urgency of the situation.  She was astonished by the lack of communication, and a bit appalled when I told her that I didn't really feel as if anyone wanted to hear from us, for good or ill.

Back at nephrology, Dr. A went over the test results.  Her creatinine is 1.1, much improved and more typical of how she was when she was on the tacrolimus last time.  The antibodies against the new kidney are an enormous problem.  She showed me the readouts, which the lab configures in several different ways for clarity.  But it didn't matter how you look at it.  It's bad.

There are six tissue antigens involved in 'matching' a donor to a recipient, in addition to the blood type antigens (A, B, O, pos/neg and a bunch most people have never heard of).  Babygirl and Jorge were a blood type match.  They were NOT a tissue match on ANY of the six.  The decision to give her this kidney was multifactorial:  Kids die on dialysis (it happened to another child her age locally while we were waiting), and the newer anti-rejection medications reliably prevent antibody production in the majority of transplant recipients regardless of the degree of matching.  Babygirl just happens not to be one of them.

These antibodies are problematic in a million different ways.  The obvious problem is that it is the job of an antibody to remove whatever it is sensitive to from the system.  This is a great thing when a chicken pox antibody removes chicken pox virus and keeps you from getting sick.  This is horrible when the antibody is against something you desperately need, like a kidney.  Another problem is that when she gets her NEXT transplant, she's going to have to wait for an exact tissue match, since she'll already have antibodies against anything else.  That narrows the field considerably, and makes the next wait MUCH longer.  And finally, it means that she can't be enrolled in any experimental medication protocols, which dramatically narrows future choices if she isn't tolerating her medications.

We spent half an hour on a compliance study update, and some time getting some suggestions from the social worker about dealing with the school.

Then we left to come home.  On the way home I got three different sets of phone calls from doctors.

Nephrology:  For next month's visit, they are scheduling a biopsy.  And where we go from there depends on the results. It could be an overnight stay, or a major admission.

Neurology:  Start tapering the old medication downward, and cross-taper the new medication upward, and call in three weeks if things aren't improving.  Oh, and here's the name of the person who coordinates out-of-town patient appointments, which CAN be set up more than two weeks ahead, and here's the number for the FOUR triage nurses who would be happy to talk to you anytime you are having a problem (um... ya think you could have given me THOSE little gems of info four months ago??).

Mom's doctor:  Go over to your Mom's house and resort her pills to new doses - her kidney (yeah, she only has one also) is not happy with her meds.  Oh, and weigh her every day so that we know that her heart isn't unhappy with the change.  Yeah.  I'll just fit that in......between driving, stopping at Barnes and Noble to straighten out a problem with Babygirl's Nook, and picking up her new meds at our pharmacy before it closes at six.  Oh, and we found out today that Babygirl is now restricted to one month supplies of her medications and no one knows why.  I'll fit figuring out what to do about that into my work day tomorrow along with reminding nephrology to get prior authorization for the biopsy this time.

Bedtime can't come too soon, but I think I'll have trouble sleeping anyway.


PS The debit card was between the door and the seat of my car.  It must have fallen out of my pocket.


  1. I can't even imagine the stress you must feel. I hope it gets better!