Amongst the host of drugs Addison has introduced into her tiny body over the past 7 weeks is Tacrolimus, which is actually the most important one. It is the anti-rejection drug she will have to take twice a day for the rest of her life.
The rules around taking Tacrolimus include: no food half and hour before or after the dose (which takes a bit of juggling with her feeding time so the ‘never wake a sleeping baby’ mantra doesn’t always apply); doses are to be 12 hours apart; and the bottle must be shaken very well because it is specially compounded at the Children’s Hospital pharmacy to be in liquid form (risk of not shaking is varying Tacrolimus blood levels depending on concentration of drug in the system). A 3 month supply of Tacrolimus costs about $700, paid for by the BC provincial government.
Now the goal with Tacrolimus is to have a therapeutic level of about 10-12 in the initial months following transplant. Once Addison is a few months out from transplant, she will be weaned down to 3-5. Doctors determine this with a blood test. Addison has been getting a lot of blood tests. We have taken her to the lab at Children’s 4 times in the past 9 days. Our little girl’s Tac levels have been all over the map, which is apparently quite normal for babies. Her dosage has gone from 2ml to 1.75ml, down to a low of 1.5ml, back to 2ml, then 2.2ml, and now at her current dose of 2.5ml. So you can just guess what her levels have been…4, 6, 10, 9, 6, 3, 7, and yesterday’s high of 13. That’s just in the past couple of weeks.
The pharmacist tells us Tacrolimus is notoriously difficult for dosing because the absorption rate is somewhere between 5 and 65%, with no real rhyme or reason for the different reactions. Oh and there are also the possible side effects – tremors, diabetes, kidney problems. But the benefits are greater than the risks, so on with the Tacrolimus tango.
And here is a medication board update:
Compare that to 3 weeks ago when Addison first got home:
Elaine, Aaron and Addison