We have been feeling a bit lost with such a long stretch between hospital appointments, but it’s a good feeling and something I’m sure we’ll get used to very quickly. Before Addison’s biopsy in February, our last Multi Organ Transplant Clinic visit at BCCH was back in December prior to our Australia trip.
Regular blood tests have been looking really good, except for the kidney numbers. We have been watching that pretty closely since the Princess was diagnosed with chronic kidney disease last year from her time on ECMO. After adjusting one of her anti-rejection drugs, Tacrolimus, and giving a smaller dose every 8 hours instead of every 12 hours, the numbers had slowly dropped down to the high end of normal – fantastic news. However, in February, we again tweaked her Tac to go back to a dose every 12 hours and since then, the BUN and creatinine have been creeping up again. Sigh.
There are a couple of options. One would be to switch out her second anti-rejection drug, MMF, to a new one called Sirolimus. It can be easier on the kidneys but 30% of patients develop mouth ulcers and can’t stay on it. The other option is to go back to dosing the Tac every 8 hours, but that involves waking Addison up at midnight every night to give her meds. So after some discussion with her transplant team, we are going to try lowering the Tac and sticking to the 12 hours. We’ll get blood done before we leave for our rebooked trip to Hong Kong and Thailand in May, and then check right after we get back. We are also going back in for a glomerular filtration rate test (GFR) in early June to get a more accurate look at kidney function. Our previous one in August was what really set off the red flag for kidney disease. I am so hoping her GFR number has not dropped.
On the positive side, her heart function is excellent. We also had a hearing test this afternoon and all of that is completely normal. Yesterday Addison was assessed for speech and that is also great. Overall, she’s doing amazing right now – so healthy and full of energy. Such a zest for life…especially when it comes to climbing to the tallest part of the playground and sliding down the steepest slide! So we just keep taking it all day by day, smiling and giggling at the silly stuff whenever possible.
Elaine, Aaron and Addison