Summer is finally here! We all know that means a lot of outdoor fun and vacations. For individuals with hemophilia, vacations can mean challenges.
I remember when my son Michael was a little boy and traveling was a lot different than it is today. Michael is twenty-right years of age and has severe Hemophilia B with inhibitors. He has used Novo Seven since he was about four years of age. In those days, the factor needed refrigeration. We were constantly packing a cooler for any car trips we took. If we were going far away, once we got to our destination, we had to make sure there was a refrigerator in our hotel room, which was not as common as it is today. We typically had to order one ahead of time to make sure the hotel could accommodate our needs. I remember waiting for one to be delivered to our room after we arrived. Trips far away from home also meant that we had to make sure we knew where the nearest Hemophilia Treatment Center was. Additionally, there were questions as to whether you would pack crutches and/or a wheelchair. Vacations meant planning ahead and making sure you had everything you needed, just in case. The factor Michael needed was not FDA approved for use in the United States until he was about five years old, which meant we had to stay close to our treatment center. As soon as it was approved, we took our first real vacation to Walt Disney World in Florida. It was a celebratory trip, but also very stressful, as we had to the refrigerated factor on a plane and take a wheelchair, which we were certain he would need.
Michael is an only child, so we frequently traveled with his best friend Jordan. Jordan has been in Michael’s life since they were five years old. Jordan understood enough about hemophilia to know that then we took him with us on vacation, we were not going to be climbing mountains or riding UTV’s. He was understanding and the perfect companion to Michael. He was protective of him and always helpful when a bleed did occur. He did not get upset when the trip was cut short, or plans had to change because of a bleed. He is still in Michael’s life and always played an important part in his childhood. He was Michael’s guardian angel and always protected him from bullies and harmful situations while in all stages of school. When I think about family vacations, Jordan is always in my memories, which is why I mention him in this article. He made Michael’s vacations so much easier and more memorable.
As Michael got older, family vacations got less frequent. When your child becomes a young adult, they do not want to travel as much with Mom and Dad. We did take a great vacation to Myrtle Beach so Michael could see the ocean for the first time. We drove so we could keep the factor refrigerated and had a great time. Skipping forward, the day that factor did not need refrigeration was indeed a great time in our lives. Traveling was easier and a little less stressful, although giving factor in a hotel is always an unfamiliar experience. The comfort level is different and adapting to the atmosphere of a hotel room versus your usual kitchen table is another stress that needs to be dealt with.
After Michael’s father passed away, he and I took a vacation together. Michael always wanted to visit Seattle, Washington to see where all the writers live and thrive. Michael has a bachelor’s degree in creative writing and a minor in philosophy. Seattle was full of the art world that Michael loves. It was a great trip and one that I will never forget. We visited museums and parks, but the city was also full of streets that are difficult to handle when you have trouble walking up and down inclines. We took cabs when the walking was difficult and made the best of the beautiful city.
Traveling can be a wonderful and unforgettable experience. Packing supplies and flying can be stressful but checking in with your HTC prior to traveling can be very helpful. Making sure you know where the nearest treatment center is to your destination is also very helpful and comforting. Traveling with a letter from your HTC can make getting through security in airports easier and less stressful, especially when you are traveling with needles and supplies.
So, enjoy your summer! Travel now that you are vaccinated! Check in with your HTC prior to traveling and make some great memories!
Karen and her adult son, Michael, live in Ohio.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.