Making our biannual trip to the city for my husband’s medical appointments

My name is Kylene, and if you haven’t read my column before, my husband, Donnie, was diagnosed with pulmonary fibrosis in late 2022. Right now, it’s 5 a.m., and I’m writing from our hotel room. Twice a year, Donnie and I drive two and a half hours to Barnes-Jewish Hospital in St. Louis, Missouri, where we meet with his care team at Washington University.

We can only see his pulmonologist on Thursdays and his rheumatologist on Fridays, so we usually drive up on Thursday and spend the night to save time. This schedule works well for us, and we treat it like a mini getaway.

But these appointments used to fill me with anxiety and dread. We’re a few years into this journey now, and I’ve learned to trust my husband’s doctors and all of the care they provide. He is fortunate to have a fantastic medical team that has truly changed how I feel about healthcare. It took us a year to find the right doctors, but I feel like we’ve hit the jackpot with this amazing team.

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Day 1

One thing I love about WashU and Barnes-Jewish Hospital is their streamlined approach. I’ve always felt that everything runs like a well-oiled machine here, and it makes a nerve-wracking day in a huge hospital a little easier.

When we arrive, we pull up to valet parking. This wonderful service means we don’t have to walk far, and Donnie can save his energy for testing and appointments.

Donnie’s first real task once we arrive is testing, so our first stop is the pulmonary laboratory, where Donnie completes his pulmonary function test and six-minute walk test. The process is typically quick, taking less than 30 minutes. There’s a separate area for CT scans and radiographs, but he wasn’t due for either this time. I always stay in the waiting room, so I bring something to keep me occupied — a book, my laptop, or earbuds for music or podcasts. This helps me pass the time peacefully, as I always feel a bit of anxiety for Donnie while he’s going through testing.

After he finishes those initial tasks, we take the elevator up to see his pulmonologist. This part sometimes takes a while, but we don’t mind. First, we speak with the nurse or medical assistant, who goes over Donnie’s medication list. While tedious, this step is important because the medications seem to change constantly. Donnie and I both use iPhones and have found the Health app’s Medical ID super handy for tracking medications, allergies, conditions, and emergency contacts. This is an easy way to keep important medical information up to date for appointments or emergencies.

After reviewing Donnie’s pulmonary test results, the doctor will answer questions and decide whether to change his treatment plan. I always save questions on my phone ahead of time so we don’t forget to ask them, and I also type in the answers so we can remember them once we’re home. After the pulmonology appointment, we have the rest of the afternoon and evening to do whatever we want in the city.

Some of our favorite activities include checking out restaurants in The Hill, an Italian American neighborhood in St. Louis that has amazing restaurants and beautiful architecture. We also like to drive through gorgeous Forest Park and visit shopping centers that we don’t have closer to home. There’s so much to do, and while we don’t have a ton of downtime, we make sure to have a little fun while we are there.

Day 2

The next morning, we head back to the hospital to meet with Donnie’s rheumatologist. Since his lung disease stems from underlying autoimmune diseases, it’s crucial that we keep these diseases under control as much as possible.

This doctor also examines him for any changes. She listens to how his body has been feeling since the last visit. She usually orders blood work to check for changes or to see how he’s responding to his medication. We leave after the appointment, and he receives his blood work results or treatment changes via the MyChart app. The app takes some getting used to, but it is helpful and has proven to be the best way for Donnie to communicate with his doctors and nurses.

After the rheumatology visit, we are finished with appointments. Donnie can schedule his next set of appointments for six months from now. Our trips to the hospital will always be a little nerve-wracking, but they also provide peace of mind. Knowing that his doctors are monitoring him closely and working together to create the best possible treatment plan is a great relief to both of us and makes the trip worthwhile.

Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.