Last night I was at the pharmacy filling a prescription for Addison – a new addition to the daily regime of drugs she takes to prevent rejection. The pharmacist looked at me curiously and asked, “Do you have a history of familial hypertension?” Let’s face it…he doesn’t get many 6-year olds on atorvastatin (Lipitor). His customers would all be decades older than Addison, like her 74 year old grandfather! So I kind of chuckled and gave him the primer on Addison’s history.
But really, it’s not funny at all. Here’s the thing: pediatric heart transplant patients can run into a serious roadblock after they get through about ten years post-transplant. Coronary artery disease – yes that same hardening of the arteries often attributed to unhealthy lifestyles, smoking, lack of exercise – is one of the leading causes of death post-transplant. In the case of transplant patients, the inflammation is caused by chronic rejection. Unfortunately it can be difficult to diagnose, the exact mechanisms that cause it are still a mystery, and treatment options are limited.
One thing that does seem to help, or at least it doesn’t make things any worse, is to take a statin as a preventative measure. So Addison is now on the same medication as Gong Gong. It’s a fairly benign drug, especially when compared to the harsh immune-suppressing drugs she’s been taking twice a day for the past six years. And the medical approach to it is, “Why not?”
Which again leads me back to the same stark reality – there is still so much we don’t know about transplant medicine!!! Sometimes I feel like we’re playing a bit of a poker game where you just hope for the best and try to make the best logical decisions based on the little information you know. You might get a great hand, other times you are dealt the crappiest set of cards ever and you just don’t know how you’ll climb out of the hole. Sometimes you don’t. So far, I feel like we are beating the odds. But you just never know what that next round will bring.
And this is why we are so dedicated to raising money for transplant research. It’s only through scientific advances that children like Addison won’t have to be on a drug to prevent a disease that a kid should never ever have to think about. Only through research will transplant be a cure.
At transplant clinic yesterday Addison’s team was very happy with her health. Her heart looks fantastic, blood work looks pretty good (except for slightly elevated BUN – blood urine nitrogen – which is likely due to slight dehydration in this heat), growth is great. We don’t have to go back to clinic for another six months. That’s all good news, so in the grand scheme of things, even if I don’t like why my Princess needs to take it, a new pill in the daily drug regime is not a big deal.
Elaine, Aaron, Addison and Charlie