Shipping medication is convenient, but it can also provoke anxiety
What happens if my son's Alagille meds aren't delivered on time?
I’d describe myself as pretty easygoing. I’m by no means a control freak, but I’m also the type of person who likes paying bills one by one on my time instead of having everything on auto pay. I like having certain timings and rhythms, and I’ve mostly achieved this. But with two young boys in the mix, ages 7 and 4, life isn’t always predictable.
Routines are great, but children love to throw you for a loop here and there. When it comes to my son Finley, who has Alagille syndrome, some extra curveballs make it difficult to stick to our routines.
Medication has been a constant for Finley since his stay in the neonatal intensive care unit following his birth. Finley was born about a month premature, and while we knew something was going on after delivery, the Alagille syndrome diagnosis didn’t come until a few months later.
Since then, Finley has been on a pretty regular number of medications and vitamins. While his doctors have added or removed a vitamin or two from his treatment plan over the years, we largely know what to expect — as long as we have the medications on hand.
The pros and cons of shipping medication
By the time Finley was born in 2021, the pharmacy at our local children’s hospital had started shipping medications to the majority of patients. That was convenient for us, as the hospital is a 50-minute drive from our home, and it was an invaluable resource for families who had to drive much farther.
While I’ve sometimes picked up Finley’s medication in person, I’m thankful that it’s mostly been shipped to our home. But with shipping comes uncertainty, and delays can provoke a great deal of anxiety.
Finley shows off his silly face at the doctor. (Photo by Jay Sandstrom)
Running out of medication for a child with a rare disease is scary. Will Finley’s health take a nosedive if we miss one day of meds? No. But is it hard to feel like I’m not doing everything I can as a parent? Absolutely.
We can make sure to order his medication on time, but what if we’re mistaken about how much medication we have left? Our family has cut it close on a few occasions.
Once, one of the medications was misdelivered, and we had to get a replacement. That’s when we learned that our insurance will cover only one medication replacement in a calendar year. That just adds another level of stress to something that’s supposed to be a convenience. Thankfully, that scenario has only happened once. I hope it never happens again.
Then there are the dreaded shipment delays. The pharmacy can ship the goods, but if things get gummed up at the post office, what can you do? At that point we’re at the mercy of the process.
So we try to order as early as allowed. We keep an eye on how much medication we have left. But beyond that? All we can do is hope it arrives when it’s supposed to.
I realize that a lot of my columns deal with the stress and anxiety of raising a child with a rare disease. There are so many unknowns and things we can’t control. Providing Finley with his medication feels like something we can control — until a shipment is late. I know that shipping delays aren’t my fault, but it’s hard to change that feeling.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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