Traveling With Hemophilia Doesn’t Need to Be a Headache

I gaze at the glorious sunrise as I take off in my red RAV4. On this particular trip I plan to make my way down from my home in Northern California to Los Angeles. My daughter and I will most likely push through the 12+ hour drive in one day. Even though we are in a better space, pandemic-wise, than a year ago, I still prefer to minimize stops and overnight stays.

Even on a quick trip to see family, I have become accustomed to planning ahead for multiple potential issues, such as a bleed. Being prepared involves ensuring I travel with all the medication and supplies I could possibly need on my trip. 

I also make sure to prepare for day trips. Any time I am more than 45 minutes away from my home, I pack my factor replacement and supplies because I live in a rural area where no hospitals stock my factor. I never want to be too far away from it, in case there’s an emergency.

How long will I be gone?

I need to know exactly how many days I will be gone. This determines how much factor to bring. When I was on regular factor, I brought enough for every day of my trip so I could treat daily if I got a bleed. Now that I am on an extended half-life product, I bring my prophylactic doses, plus a few extra doses in case I get a bleed. For an eight-day trip, that means I would bring four or five doses of EHL factor, versus eight doses of regular. That is extra suitcase room!

Don’t forget the supplies!

I then pack all of my support supplies. Everyone has their own preferences in infusion style, so supplies can differ from person to person. Also, some people have ports (I do not) and that means extra supplies. 

I reach for quite a lot of things when I start to pack. The first is infusion supplies, including sterile drapes, syringes, butterfly needles, bandaids, compression wrap, alcohol wipes, and hand sanitizer. 

I also bring supplies just in case I end up with a bleed, such as ice packs, Ace bandages, knee braces, ankle braces, and KT tape. I start to look like a medical supply store! My friends tease me that they always know who to come to if they are injured.

Air travel requires additional preparation.

Finally, there are times when travel may involve flying. When this is the case, I make sure I have a travel letter. The letter is written by my provider and alerts Transportation Security Administration authorities that I am traveling with medication and medical supplies. This would, hopefully, keep them from taking away medication and the ancillary supplies.

I have been flying with factor and supplies since 2006. When I get to the screening I always declare that I am putting through medication, syringes, and needles. It’s been an important gesture to offer to share with them the letter I have brought from my doctors. I have never been asked for the letter or been given any issues.

I control my hemophilia, it doesn’t control me.

Finally, I take with me my expectations that I am going to have an awesome trip and that hemophilia will not get in the way of my new adventures. With proper protection planning, trips can be so much fun!

I am so thankful that I have the treatment necessary to keep me safe when it is time to break up life’s monotony with a good trip. Where are you heading?

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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.