Why my 6 year old is on a statin, same as her grandfather #lifeaftertransplant

IMG_8108Last 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.

IMG_8190

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.

Love,
Elaine, Aaron, Addison and Charlie

 

8 thoughts on “Why my 6 year old is on a statin, same as her grandfather #lifeaftertransplant

  1. Thanks for the informative post Elaine … So great to see Addison thrive and have #’s to back it up … enjoy the ‘ dog days of summer ‘ … and a big hello to the McYong clan … live long and prosper. 😉

  2. My granddaughter had a heart transplant due cardio myopathy. She inherited from her mother, who wasn’t diagnosed until Indigo’s health problems came to light. I have had high blood pressure for years and am on lisinopil. I once picked up meds at the local pharmacy. It wasn’t until 2 days later that I realized my daughter’s name was on the label not mine. Apparently a med for cardio myopathy is the as as for high blood pressure.

  3. So great to hear the transplant clinic went well! And how hard is it to get kids to drink water!?! I constantly struggle with that issue here in Queensland. Enjoy the heat, I hope the smoke is clearing.

  4. Nice piece Elaine. Happy to hear Addy is coming along on an unpredictable
    Journey. She is beautiful. The info you share is so helpful. We all
    Need to be educated All the best to your family
    Pamela. Old penny from TRFof BC

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