Why it’s important to be your own patient advocate, or Statins Part 2 #lifeaftertransplant

Addison has now been taking a daily statin for three weeks. So far, we haven’t seen any major side effects, but that could be due to the fact she’s on half the amount she was originally prescribed. And that leads me to one of the biggest lessons we have learned as parents of a hospital frequent flier: BE AN ADVOCATE. (And listen to your parents.)

Don’t get me wrong. We have great trust and respect for our entire medical team. They saved our daughter’s life and continue to keep her alive and well, but that doesn’t mean they are right 100% of the time. Really, is anyone ever right all the time? And unlike Aaron and me, their focus is not exclusively reserved for the health and well-being of Addison. They have many transplant kids in their care, other sick kids to see, plus their own families to look after. When Addison was in the hospital through her heart failure, subsequent transplant, recovery, and then later admissions for infections, we learned to pay attention and speak up or ask questions if we weren’t comfortable/sure about what was happening.

When we came home with our new bottle of statins a few weeks ago, I didn’t think much of it. The pills were tiny so not an issue for Addison to swallow. But it was my parents who raised a red flag. When I told them Addison’s dose was 10mg, they were aghast. My dad was on that same dose for several years before his doctor finally increased it. He was very concerned his 6-year-old 50-pound/22-kilogram granddaughter’s dose was the equivalent of a full-grown adult’s, so I started doing a little research. I am well aware Dr. Google is full of completely false crap, which can make it difficult to find useful information. I try to stick to known sources and scientific journals. It only took me an hour or so to find out the recommended dosage for pediatric heart transplant patients who are prescribed atorvastatin as a preventative measure against coronary artery disease is .2 grams per kilogram of body weight. Do the math – Addison’s dose should be 4.4mg, NOT 10mg.

Turns out the smallest pill size available for atorvastatin is 10mg. That hardly seems like a good reason to give my child twice as much drug as necessary, right??! Isn’t this what pill cutters are for? So I consulted the team and told them my concerns and the information I had found about the recommended dose. Well, after a couple of days and a follow-up phone call or two, they agreed, or at least didn’t disagree. Now Addison is taking 5 mg of atorvastatin once a day. We dusted off our pill cutter and we’re putting it to good use.

I’m much happier with this lower dose. Addison’s Lao Lao and Gong Gong are relieved too (plus they can say “I told you so!”). And again, I’m reminded of how important it is to be your own advocate. At the end of the day, it’s your body, your life, your health, or even more importantly, your child’s well-being. No one is right all the time, not even the most experienced and educated physicians, nurses or medical staff. Never be afraid to speak up.

Elaine, Aaron, Addison and Charlie

3 thoughts on “Why it’s important to be your own patient advocate, or Statins Part 2 #lifeaftertransplant

  1. I learned a long time ago to question when meds are being added and it doesn’t matter what the situation. Dr. Google might not be perfect but it does give reason to explore other options and ask questions So good for you Elaine! Always be an advocate.
    Hope you folks are enjoying our extended summer.

  2. Wow, E! That is really crazy! Good for you for being informed and advocating for Addison! (And thanks to Lao Lao and Gong Gong for being THEM!)

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