When you’re diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), you may wonder if your life will ever feel normal again. The good news? Many people with PNH can still participate in regular activities, including travel, when they have this rare blood disease.
But there are vital safety precautions to be aware of, says Teresa van Oort, LCSW, a lecturer and program manager at the University of Chicago’s Crown Family School of Social Work, Policy, and Practice. When you have PNH, “Getting a cold could be something that puts you in the hospital for two weeks,” she says. That’s why, “Even before it was ‘cool,’ we encouraged patients to wear masks and gloves on airplanes, wear shoes at the beach, and avoid areas with dirt or microbes.”
The ticket to safe (and happy) travels when you have PNH: careful planning, extra precautions, and attention to the self-care steps that keep you doing well at home, such as sound nutrition, consistent hydration, and plenty of rest.
How to Make Your Next Trip PNH Friendly
Consider implementing these strategies before you hit the road.
1. Share Your Travel Plans With Your Care Team
In the early stages of travel planning, check in with your care team, says van Oort. Before they give you the green light to book your next adventure, they’ll consider factors such as where you are in the course of your PNH treatment and what your most recent blood counts were. Although newer treatments, such as monoclonal antibody medicines, often help people with PNH maintain healthy blood counts without needing transfusions, your care team may still recommend that you schedule one before or after your trip.
That said, according to van Oort, many patients are intimidated to bring up their travel plans with the treatment team. It’s important not to be, she urges, noting how vital these conversations are, as your care team can provide instructions for staying safe on the road. “I’ve never had a medical team member have a negative response [to travel plans], ever,” says van Oort. Approach a social worker if you have concerns, she adds, since they can act as an effective bridge for communication between you and your team, if needed.
2. Stock Up On Your PNH Medications (and Any Others)
Connect with your care team early to be sure you’ll have a healthy supply of medications while on the road, including extra in case of unexpected delays. Even the iron and folic acid supplements commonly recommended to help people who have PNH with red blood cell output might be worth having on hand.
Don’t forget to pack smart, placing your medication in your carry-on luggage so you don’t risk losing it or being without it for a stretch of time.
3. Confirm Your Vaccination Status
Bacterial and viral infections pose an extra risk to people with PNH, but deciding whether to get vaccinated can be tricky: Certain vaccines pose a risk of hemolysis, or red blood cell destruction, to people with PNH. Of course, getting sick with the flu or COVID-19 poses health risks, too.
The Aplastic Anemia and MDS International Foundation (AAMDSIF) recommends asking your care team for advice about your particular situation. If you haven’t spoken about it in a while and plan to hit the road, it’s a good time to bring it up.
4. Pause Before Purchasing a Plane Ticket
The higher up you go in an airplane — or to a destination at a high elevation — the more likely you’ll feel the effects of PNH-related low oxygen levels. Difficulty breathing and even chest pain are possible. So van Oort urges you to check in with your care team before booking a flight. They may want to preemptively give you growth factors or a blood transfusion to prevent any issues, according to the AAMDSIF.
If you do fly, be sure to drink plenty of water to stay hydrated, and stretch and take a small walk hourly to keep blood circulating and prevent blood clots from forming. Doing leg lifts at your seat every 15 minutes or so may help, as well.
5. Book Accommodations That Focus on Cleanliness
Since you’re more likely to pick up colds and other infections with PNH, especially if you’re on immunosuppressive therapy (to prevent your immune system from attacking your bone marrow), you’ll want to keep things squeaky clean for those long stretches in bed overnight. Hotel, motel, or lodge, “Look for locations that have high standards of cleanliness,” recommends van Oort.
If you can, and are traveling with someone, bring your own sheets and pillows. When you arrive, “Wait in the car while your companion goes in and wipes stuff down and changes the sheets or brings in your pillows or towels [from home],” she suggests.
6. When Visiting Loved Ones, Ask Them to Prepare for Your Arrival
As much as possible, people who have PNH should visit in a cleaned and sterilized environment. When you’ve traveling to see family or friends, explain your health situation. Don’t be afraid to request that:
- Grandkids (or anyone under age 13) wash their hands and face before hugging and hanging out with you
- Pets be groomed shortly before you arrive to minimize contact with dander, dirt, or debris on their paws after a walk outside
- All the safety measures you naturally implement at home are done at your destination as well
7. Strategize to Minimize Unnecessary Exposures
New places and new experiences are part of the wonder and joy of traveling. But since you’re more vulnerable to infection, it’s a good idea to do some preplanning and strategizing.
Movie theater in Atlanta? Concert in Boston? Restaurant in San Francisco? Mask up and ask your travel partner to head in before you do and wipe things down, suggests van Oort. They could even place a towel or small blanket on a chair before you get there.
When you’re out and about, be sure to avoid touching your face or rubbing your eyes after coming in contact with things such as door handles or a playbill.
And when checking out a new art exhibit or museum installation, pick a low-traffic day and time. “We often encourage visiting museums on weekdays, when they’re more clean and less crowded,” says van Oort.
8. Pace Yourself
Be mindful of your body and aware of how you’re feeling through the activities that you’ve planned for your trip, says van Oort. “Pushing it today could mean you are resting for the [entire] next week. So maybe if you start to feel tired in the morning, you take a nap, and that way you can continue your plans once you’re feeling rested.”
One approach is to build a healthy dose of downtime into your schedule, so there’s wiggle room for recovery if you need it. And don’t be afraid to skip activities. “If it doesn't sound good to you, don’t force it,” says van Oort. “Listen to your body; otherwise, you might feel the effects later.”
9. Don’t Be Afraid to Ask for Help When Planning Your Trip
Ask for input from a social worker when planning travel to ensure safety on your trip, advises van Oort. “We help problem-solve so you can travel safely and attend important life events.”
A social worker can make recommendations based on your exact plans. “Maybe you sit in the back of a graduation ceremony,” she says. “Maybe you avoid the middle of the dance floor during a wedding reception.”
Planning Ahead
One final note: Experts also recommend that people with PNH — and, for that matter, anyone managing a rare disease — carry a simple “emergency letter” with them at all times. This single page can briefly explain their unique diagnosis, care plan, the potential risks and complications they face, and how to manage them, as well as whom to call for advice. This is especially helpful if someone with a rare condition does need to go to an emergency room in a new city while traveling, since providers won’t have immediate access to the patient’s medical records and may not be familiar with the required care needs.
