Tips to make infusion day easier
Infusions are easier when you take steps to be prepared. Here are some ideas that have helped other patients:
Scheduling: Between the actual infusion and the travel time, infusions can use up most of a day. To make it easier on your work or school schedule, you can try these ideas:
- Plan with your teacher or boss to do a half-day on your infusion day
- Ask for work you can do during the infusion so you don’t miss out
- Talk to your infusion center to see if weekend or evening appointments are available
Also, keep in mind that lots of people have scheduling conflicts from jobs, childcare, and other responsibilities. You’re not the only one. Most teachers or bosses will be used to working with scheduling requests.
Preparing: You’ll need to be resting for about 4 hours during the infusion. So plan something fun or useful to do each week. Here are some ideas:
- Call friends you haven’t seen in a while
- Draw
- Do homework
- Read
- Play a video game
- Learn a language on DVD
- Watch your favorite TV shows on DVD
- Make vacation plans
- Write a book, journal, or blog
Keep with it: Every infusion helps you get rid of more GAG. On the other hand, every time you miss an appointment, GAG builds up. So it is important to go to every appointment. If you miss one for some reason, schedule the next one promptly.
You may notice some changes in how you feel quickly. Other effects may take longer. Even if you don’t notice a change at first, it’s important to keep up with your treatments. NAGLAZYME® (galsulfase) treatments rid your cells of excess GAG that cause the symptoms of MPS VI.1
Next: Tracking your treatments