Vacation is important, even if you have pulmonary hypertension. “Everyone needs a break now and then,” says Jolande de Jonge, pulmonary hypertension nurse consultant at Erasmus MC. In the latest edition of “Papillon,” the magazine of PHA Netherlands, she provides some tips for patients on vacation and says, “If there is anything we can support, we will do so.”
Jolande shares a special example of this support. At Erasmus MC, a young student with an implanted Lenus Pro pump, who comes in every three weeks to have the pump refilled, asked if they could help him go abroad for an internship. This led to consultations with the insurance company and the pulmonary hypertension center in the respective country for pump refills. Although it did not work out initially due to the high cost of treprostinil, the team at Erasmus found a solution. The student traveled to the Netherlands every three weeks on Saturday and back on Monday for a nine-month internship. “It took quite a bit of effort, but he had an unforgettable time,” says Jolande.
Flying
“Quite a lot is possible,” Jolande emphasizes. “However, not everything is,” she adds. For pulmonary hypertension patients wanting to go abroad, it depends on the destination and medical facilities. It is important to check if there is a pulmonary hypertension center where you can go in case of problems. Consult before going on vacation, especially if you plan to fly. A HAST (high altitude simulation test) may be necessary to see if you need extra oxygen during the flight.
Vacation Letter
Previously, patients flying with oxygen received a fit-to-fly statement. Now, they receive a vacation letter indicating the need for oxygen. Patients without extra oxygen do not need this letter but can request a medical statement and medication overview before vacation. Carry a medical passport with important information about pulmonary hypertension and your medication, and keep all medication in your hand luggage.
Lifestyle Rules
When diagnosed with pulmonary hypertension and starting medication, lifestyle rules apply. Consult before flying or going into the mountains due to lower oxygen levels. If a pulmonary hypertension patient wants to ski, the advice is to stay below 1,000 meters.
Swimming
Swimming is generally advised against for pulmonary hypertension patients due to the pressure of water on the heart.
Heat
Heat can be stressful for pulmonary hypertension patients as it causes blood vessels to dilate, lowering blood pressure. Patients with the Lenus Pro pump need to be extra careful as the pump runs faster in heat. Tips to cope with heat include:
- Stick to your fluid restriction
- Seek shade
- Exert yourself as little as possible
- Avoid the warm hours of the day
- Store liquid medication in the fridge
Look at the Possibilities
Newly diagnosed patients may feel a vacation is impossible, but Jolande advises giving it time. With close contact and support, patients often see an improvement in symptoms and can enjoy vacations.
For more tips, visit Stichting Pulmonale Hypertensie