What finalizing travel preparations as a post-transplant patient entails

“Anticipation, anticipation/ Is makin’ me late/ Is keepin’ me waitin’.”

The chorus of Carly Simon’s 1971 song “Anticipation” came to mind earlier this week as my wife, Susan, and I prepare to leave for vacation. Despite booking our trip through the Czech Republic, Germany, and France almost a year in advance, I can’t believe it’s here so soon.

Before my diagnosis of idiopathic pulmonary fibrosis in January 2017, Susan and I had taken several vacations every year. Our favorite type was cruises, until COVID-19 came onto the scene in early 2020 and vacations were put on hold.

In July 2021, I received a bilateral lung transplant, which restricted my travel for about a year. As Susan and I began planning vacations again in consultation with my care team, we determined that large cruise ships were no longer an option. River cruises on smaller vessels were agreeable, though, as they entailed plated meals rather than buffets and fewer passengers. Eating from a buffet isn’t recommended for transplant patients due to the risks posed by others with less stringent sanitary habits serving themselves.

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Last week, I discussed the follow-up testing my care team prescribed after a drop in my pulmonary function test (PFT) results. Fortunately, no pneumonia was present, and biopsies indicated no allograft rejection.

To ensure there were no barriers to going on vacation, I scheduled an in-person clinic appointment 10 days before our scheduled departure. The doctor gave me the all clear.

The best news was that my PFT results increased by 13% from the previous testing. While some cultures from the lavage won’t be finalized for four to six weeks, my team’s primary concerns — pneumonia and organ rejection — were eliminated.

Preparing in every way we can

The appointment was also important for refilling my prescription medications and making any needed changes to the dosages. I’ve had 134 changes to my post-transplant medications, so I wanted to give myself plenty of time to make adjustments before traveling.

This will be the first time I’ve traveled internationally with Forteo (teriparatide injection), a refrigerated medication. I have cold packs for the flights, and our cabin on the ship will have a small refrigerator.

Additionally, the cruise line has recommended that I bring all medications in their original packaging. In all the years we’ve been going on cruises, this has only been an issue once. While carrying the original packaging will be more cumbersome than preparing my daily doses, it will be less stressful than being stopped by a customs officer. Additionally, Susan has a list of all my medications and dosages in the event of an emergency.

While we’ve been cleared by my care team for the trip, we subscribe to the best practice of being prepared. We will be thousands of miles from home and my doctors. In the unlikely event that something goes wrong, I want to be able to get back quickly and safely. In addition to trip insurance, we have a medical evacuation plan from Medjet, which provides emergency medical transportation back to my care team from anywhere in the world.

I’m ready for this trip, which will celebrate both Susan’s birthday and our anniversary. (The fact that these two things fall on the same date makes it almost impossible for me to forget either one!) It’ll be an excellent combination of living my best life and continuing to make every breath count.

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.