If you or your child has a bleeding disorder, infusing away from home can be challenging for several reasons. You’re out of your normal element, unsure of where you’ll be able to infuse safely and in private, and nervous about what will happen if you’re “caught infusing” by someone who is unfamiliar with bleeding disorders. Here are some tips that can help make the experience go more smoothly for everyone:
1. Carry documentation at all times
The medical information letters provided by your hemophilia treatment center (HTC)—one that explains why you’re carrying products, needles and other medical supplies, and one from your doctors with information about your bleeding disorder and the usual treatments you receive—aren’t just for when you’re going on a trip. Anytime you’re away from home, you should have these documents as well as your medical alert bracelet with you, says Milena Pirnat, founder of the Facebook support group Hemophilia Mother.
2. Bring extra supplies
“I keep a kit in my car and always bring extras of everything I will need to infuse my son,” says Matti Vann, founder of the podcast “Hemos Unite.” When you’re at home in your normal surroundings, the routine is likely to go smoothly, she adds, but “when you’re somewhere new and different, there’s more chance for error, so you need those extra supplies, just in case.”
3. Find the right space
In public places like amusement parks, Vann always asks for the location of the first-aid room. “I’ve never had a problem using this room,” says Vann. “But you need to speak with authority, and make it clear that this is a medical necessity and not a request,” she adds.
When no first-aid room is available, Vann’s second choice is her car. “My son can sit in his booster seat and watch a tablet while we go through the process,” she says.
No matter where you are infusing, “always make sure that you pay strict attention to ensure that you have the most sterile conditions possible and that you can wash your hands and sterilize your equipment,” says Bojan Pirnat, executive director of Hemophilia Ontario (and Milena Pirnat’s son).
4. Never trade safety for privacy
“Making yourself or others more comfortable is secondary to your health,” says Bojan Pirnat, who has hemophilia A. “You have a serious medical issue and if you know you need to treat immediately, you need to be ready to improvise so that you get your treatment as quickly and safely as possible.”
5. If you’re “caught infusing,” stay calm
Infusing is nothing to be ashamed of, says Bojan Pirnat. “You are being responsible about your health and doing what you need to do to stay safe.”
If someone walks in on you while you’re infusing yourself or your child, he recommends “maintaining a responsible attitude about your disorder as well as a calm, matter-of-fact demeanor where you are open to explain the basics of what is happening, to put the other person at ease, but not to feel obligated to overexplain or be defensive about what you’re doing.”
“When you are calm, reasonable and present what you are doing as normal, that will be enough to put 90% of people at ease and leave you in peace to do what you need to do,” he adds.
What about the other 10 percent? Bojan Pirnat says if the person is unreasonable or thinks that you are doing something illegal or inappropriate for the space you are in, you can show them the travel letter from your doctor or your medic alert bracelet, or ask to speak to a manager of the establishment to mediate the dispute if there is no other option.
“I’ve been ‘caught’ a couple of times, and I just ignore them and they go away,” says Vann. “I honestly don’t care what people think. If someone had the gall to stick around and watch, I would use it as an opportunity to educate them on what bleeding disorders are and why we need to infuse.”