Traveling with a rare disease
Traveling as a rare disease patient starts long before the booking of tickets. It starts in the physician’s office where travel is planned around treatment regimen. My wife and I recommend that rare disease patients work closely with their physicians before planning travel to ensure that the patient is healthy enough to travel. Reviewing travel with a physician is important because changing altitudes, sitting for prolonged periods of time, changing time zones and sleep habits, all can stress the body. Paroxysmal nocturnal hemoglobinuria (PNH) poses multiple issues with traveling. My family and I have continued to travel since my initial diagnosis and have decided to share some things we have learned.
I always take my treatment schedule into account when deciding what days to leave and return home. In the first few years of living with PNH, I left on multiple trips directly after receiving my treatment. I no longer do this. At the time I was more focused on trying to get the most time away on a trip, rather than focusing on myself and the rest I need following my treatments. I now allow myself a few days between my treatment day and when I leave on a trip. It is the rhythm of travel that I find most comfortable. This is all personal preference as it just depends on how a patient feels and responds after their treatments. When returning home from a trip before treatment I give myself time to get home and situated. This is going to look different for every person, for me its means I plan to be home from a trip 48 hours before treatment. I never want to deal with the stress of any setbacks that may avoid getting treatment when it’s due.
Traveling is rarely smooth. We have two children under five years old, so we aren’t aiming for perfection, we aim for good parenting and managing the children’s needs, stress, and our own stress. Flexibility is our friend. Setting times for leaving and arrival is a must, but these times are never set in stone and are more often dreams than reality (I’m talking about road trips. If you have a scheduled flight you had better show up on time or you will feel worlds of stress).
On road trips the car is packed full with food and water. Meals are planned and usually prepped in advance. We make sure we always have multiple gallons of water in the car with us. After a recent mishap on our latest trip we now travel with a few bars of soap and a designated hand washing gallon of water. We stop frequently for activity, and we try not to let our car too far below 1/2 tank of gas. This will keep gas off our worry list in times of real stress (like that one time we were driving in mountains, running low on gas and realized we were in the middle of nowhere with no gas stations around, oops). Traveling can be stressful. Traveling with illness is stressful and traveling with kids can definitely be stressful! We find that preparing and coming up with a detailed plan will help ease the stress.
As mentioned in previous posts, PNH patients are at an increased risk of blood clots. Per the AAMDS (n.d.) at minimum one of three PNH patients will suffer from blood clots. The PNH National Service (2020) states that half of all PNH patients will suffer blood clots. These statistics on clotting are NOT specifically related to travel, they are just a daily risk of living with PNH. That said, since diagnosis my family and I have flown cross country multiple times and taken multiple 1000+ mile road trips. My wife and I are incredibly aware of the increased risk I face for blood clots and plan our trips and stops accordingly. I am aware that the recommendations I share are not suitable for everyone and remind the readers that these are the traveling tips that work for me as a rare disease patient.
If we are driving, we stop every 2-3 hours. When we stop, we move. The family usually gets out of the car for however much time we can spare. We run, dance, skip, jump, anything to entertain the kids and keep moving. You may be wondering why? Why stop and move so much? Blood clots can form during travel when sitting still for prolonged periods of time (Centers for Disease Control and Prevention [CDC], 2020). The CDC (2020) recommends movement and calf/ leg exercises to reduce clot risk. For me, this means doing leg exercises and stretching my legs out when sitting. Knowing that my clot risk is high, we stop often and make it a point to move. If I am flying, I walk the cabin when able and do leg exercises in my seat. If you ever see a guy doing lunges in the back of the cabin, don’t be so quick to judge.
On a daily basis I focus on my hydration. The American Heart Association [AHA] (2020) states that dehydration “causes blood vessels to narrow and blood to thicken, raising risk for blood clots”. I maintain a focus on hydration as we travel. I approach travel as if it were another day at home, same eating schedule and making sure my fluid intake remains normal.
I have been wearing masks on planes and in public places for many years now. While masks seem to be a hotly debated issue here in 2020, they have been a way of life for myself and my family since my diagnosis. No plane ride was complete without the strange looks and questions from airline staff about how worried they should or should not be that I may be contagious. The thought process has been simple. I know that I am at an increased infection risk, wearing a mask is one of the simplest things I could do to stay healthy. My wife and I also bring our own disinfectant wipes on flights and clean the surfaces of our seats, tray tables and the surrounding areas as we board the plane. Due to our children's love of touching everything they see, this has also made us more comfortable with airline travel with our little ones.
It would be completely irresponsible to write a blog about traveling with rare disease and not address COVID 19. People I have spoken to have differing opinions on how restricted their travel will be due to the pandemic. Has it changed travel? Absolutely. Precautions to avoid spreading the illness have been taken just about everywhere we look. There are multiple safety recommendations for travel all the time, on each news outlet. As we learn more about this illness these recommendations change. We encourage everyone to remain respectful to others as COVID 19 is changing the world as we know it. This change will look different for everyone. We cannot encourage everyone enough to wear a mask and be respectful to others. Families of rare disease patients, cancer patients, immunosuppressed patients have lived mindfully to protect themselves and families from illness for years. Masking is an easy task that can hold large implications for a number of people fighting more than you could ever imagine. Please continue to help protect yourselves and each other from the spread of COVID 19.
Patient Safety Card
As I have discussed in earlier posts, per the CDC (2019) complement inhibitors (Soliris and Ultomiris are both complement inhibitors) increase a patient's risk for meningococcal infections 1000 to 2000 times. While meningococcal vaccinations are required before starting treatment, an increased risk of meningococcal infection remains. Alexion, the company responsible for producing the drugs Ultomiris and Soliris provides the patients receiving these medications with what is known as a Patient Safety Card. It is recommended this card be carried at all times by the patient in case they develop symptoms of meningococcal infection. This card states the possible symptoms of meningitis a patient should be on the lookout for. It can be shown to any treating provider to make them aware of what drug the patient is currently being treated with and associated risks. The card provides a number that providers can call with any questions. THIS CARD MUST BE BROUGHT ON ANY TRIP YOU TAKE. Make it a part of your travel checklist and throw an extra copy in your car or bag. You can find a photo below, please read.
My family and I have yet to travel out of the country since my diagnosis. If traveling out of the country, I would undoubtedly do research into hospitals in areas which I would be traveling. On the off chance I became sick, I would be familiar with which hospitals had knowledge to treat patients with PNH or even possibly employ a PNH specialist. And once again bring your patient information card.
So much of what I know about myself as a PNH patient has been taught through traveling. Not by reaching a certain destination but through the journey getting there. My life post-diagnosis left me trying to relearn who I was. I was left trying to find out how PNH fit into the rhythm of my life. I have my wife to thank for helping me push through so many fears about traveling with PNH. Traveling looks completely different now than it did eight months ago. There is so much more to consider, rare disease patient or not. We here at Day Fifteen hope that people who travel do so in a way that is safe and responsible, abiding by the rules and recommendations set in place, not only for your safety but for the safety of everyone.
Day Fifteen Blog: https://www.dayfifteen.com/
American Heart Association. (2020). Understand Your Risk for Excessive Blood Clotting.
Aplastic Anemia & MDS International Foundation. (n.d.) Symptoms.
Centers for Disease Control and Prevention. (2020, February 7). Blood Clots and Travel: What You Need to Know.
Centers for Disease Control and Prevention. (2019, May 31). Managing the Risk of Meningococcal Disease among Patients who receive Complement Inhibitor Therapy.
PNH National Service, Leeds & London. (2020). Overview of PNH.