Traveling With Hemophilia: It Turns Out Mom Does Know Best

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by Jennifer Lynne |

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Last week, I gave in to my 79-year-old mother’s pleas to travel from Florida to the Midwest for a family gathering in Illinois. She is immunocompromised, and I am her caregiver. The pandemic has kept us off public transportation, as she is vulnerable to COVID-19 and any other infection from a virus, bacteria, or fungus.

We both had COVID-19 in early June, and neither of us has fully recovered. My mom now requires supplemental oxygen to fly on an airplane, and sometimes when walking. I have been stressing for weeks about this trip and begged her to wait until her health improved. We argued, but she insisted. As a result, somehow I had to figure out how to lug oxygen and my factor products across the country without getting another bout of COVID-19.

A few days before our trip, we decided to change airports. Instead of using the busier airports at Fort Myers, Florida, and Chicago, we switched to smaller airports at Punta Gorda, Florida, and Rockford, Illinois, which we thought would be safer.

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Travel with chronic illness is always a hassle and requires planning. The medication for my hemophilia type B and von Willebrand disease is expensive and needs refrigeration, so a cooler is necessary. I pack the medication, needles, bandages, tourniquets, and alcohol swabs in a carry-on cooler. A section on the U.S. Centers for Disease Control and Prevention’s website titled “Travel Safe with a Bleeding Disorder” is an excellent resource for this.

Updating my travel and treatment letter

Two years ago, I switched hemophilia treatment centers (HTC). My travel letter, which I keep with me in case of an emergency, is a document written by my doctor that describes my bleeding disorders, the medicine I take, and my emergency treatment plan. Thankfully, my Tampa-based HTC is fabulous, and I received a new letter within hours.

After all this hassle and preparation, I don’t even need to infuse the medicine most of the time. On many trips, I’ve taken a chance and traveled without it. Of course, there have been multiple trips in which I’ve had a freakout moment because a bleeding episode occurred and my medicine was at home. I try to remember these freakout moments when I pack.

The Transportation Security Administration’s (TSA) PreCheck program has changed my reluctance to bring my medicine with me. TSA PreCheck is the best $80 I have spent in my life. With PreCheck, I breeze through security without anyone questioning my needles or medication. For those of us with a bleeding disorder, the program really does provide a better travel experience.

Over the weekend, we headed to the airport with masks, oxygen, and my cooler in hand. We requested a wheelchair for my mom. I stressed for weeks about traveling with oxygen, but it couldn’t have been a smoother process. We obtained a personal oxygen concentrator approved by the Federal Aviation Administration and a letter from my mom’s doctor, and made sure to have the device charged, with extra batteries on hand. Between both of our needs, it was a lot to keep track of.

The dreaded middle seat

I took my chances and booked an aisle and window seat, hoping the plane would be empty and the middle seat unoccupied. Of course, the flight sold out, and I had to sit in the middle seat. Everyone wants to escape hot and humid Florida in the summer.

Through the divine intervention of the COVID-19 gods, one of only five passengers on the plane wearing a mask was our seat mate. She was even more fanatical with the hand sanitizer and alcohol wipes than I was.

As I write this, we are still on our trip. I have visited my nephew at my alma mater, the University of Wisconsin, Madison. My cousin hosted a Fourth of July party for friends and family. My mom relaxed and had a great time playing dominoes and cards with her sisters. I’ve had some incredibly competitive Scrabble games with my uncle.

I was wrong. Sometimes mom really does know best.


Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.

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