We got back from our Spring Break adventures to a computer with the black screen of death, so more photos and details from our 11 day adventure on a mini Grand Circle tour of US National Parks will have to wait. Meanwhile, we arrived home in the middle of cherry blossoms and the Easter Bunny. Addison and Charlie’s cousins are away this year so we didn’t have our usual gang of kids running around the block for our Easter egg hunt. But the girls had lots of fun together, with Charlie figuring it out for the first time…chocolate and candy can motivate her to do anything!!
It is back to school this week and also back to reality in our life after transplant. For the past three months, we have been tracking Addison’s Tacrolimus levels closely. (This is her main immunosuppressant.) As I mentioned in a previous post, we already increased it 50% earlier this year after much discussion with our transplant team. Well, that unfortunately hasn’t moved the blood trough level enough so they wanted us to bump it again, essentially doubling Addison’s dose from where we were in December. This was a week before we left on our trip.
Aaron and I have always been very wary about walking that fine line between keeping her transplanted heart happy and keeping the rest of her body happy. Tac is harsh and toxic so it is a complex balancing act based on imprecise science. We decided to keep Addison at 3mg twice a day…at least for now.
On Thursday, we will be spending the day at BC Children’s Hospital so Addison can get pharmacokinetics testing. We have done this twice before, but not for several years. Starting at 7:30am, Addison will have a series of blood draws through the day and her Tac levels will be analyzed to try and see what her body is doing with all those drugs. This should give us a more accurate idea of what is going on over a 24-hour period and hopefully a more precise way to determine how much she needs. As she continues to grow, this is unfortunately a moving target!
It is so frustrating that this idea of “personalized medicine” is so close, yet still so far. Already, we know genetic testing has become accessible and affordable (as in companies such as 23 and Me), and this includes genetic analysis of how you process certain drugs. One of the 200+ drugs that is commonly tested is…you guessed it…tacrolimus! But no one seems to be using this in a clinical setting, at least not in BC. With some spit and less than $200, we could find out if Addison has the genetic variant that would mean she needs a lot more Tac to get the same blood concentration as people who don’t. Seems like an obvious first step, right?? Considering the BC government, as in you the taxpayer, pays for transplant meds, more precise dosing for all transplant recipients would pay off in the long term for everyone. Addison’s meds are $350/month right now!
For now, we are hopeful to get some good insight from our day at the hospital. Addison is actually excited about missing a day of school. She keeps saying, “Yeah!!!! I get to miss a day of school!!” Gotta love the outlook of our little transplant warrior!!!
Elaine, Aaron, Addison and Charlie