With so many specialists, scheduling appointments can be tricky

Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For me, there aren’t many things worse than being put on hold during a call. Unfortunately, it comes with the territory when raising a child with Alagille syndrome.

Our son Finley, 4, was hospitalized at 6 weeks old and then diagnosed with Alagille syndrome when he was 4 months old. Since that initial hospitalization, he’s seen a number of specialists who monitor and treat his condition. That list includes a cardiologist, dietitian, gastroenterologist, ophthalmologist, pediatrician, and for an unrelated matter, a urologist. It’s quite a list to keep track of. Additionally, Finley has annual echocardiograms, lab visits, and ultrasounds.

Finley Sandstrom, 4, always brings the fun energy. (Photo by Jay Sandstrom)

I find it hard to keep up with whom I’m supposed to call and when. Some appointment scheduling services can’t schedule an appointment unless you’re within a certain number of months out. So when you need to see a specialist every six months, for example, you might have to wait until at least three months before the appointment to schedule it and then hope you can get in to see the doctor. Hopefully, that appointment will fit in your schedule.

In our case, particularly with our dietitian and gastroenterology team, we try to see the same doctors. Given all of these appointments, many variables are at play.

Our family is fortunate that Finley is stable and about as healthy as we can ask. That means we generally see doctors less frequently than we used to, which is great for our family’s schedule.

But there’s still a challenge involved: It can be easy to forget to call at the right time to schedule an ultrasound that we need before the next gastroenterology appointment, for example. Or, we might say, “We need to get his labs done before the next appointment,” only to realize that the appointment is two days away and there’s no time for the labs. My wife and I are still learning how to best navigate all of this nearly four years into our Alagille journey.

The healthcare teams we see are amazing. The schedulers are doing their best with what I can only imagine is a difficult job. I fully understand how challenging it must be, especially at a big hospital. But these facts don’t make it any less frustrating when we have to navigate all of the appointments that Finley requires every year. It’s just part of our new normal.

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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