FAQ: Amanda’s Thoughts as a Teen Living with PI

1. Why didn’t I ever talk about my disease to my friends?

When I was younger, I just wanted to be “normal” and didn’t want anyone to think I was different or draw attention to my health issues. As I have gotten older, I finally realized that I had to be true to myself and frankly it was hard to hide my weekly infusions from friends, so I finally opened up to my friends about my history. My friends of course were completely supportive. Looking back, it was a bit silly how I hid my disease from others, but I did.

2. How do I make sure I make time in my schedule for my infusions?

This can be challenging. We make it part of our schedule every week. Pick a day of the week that is not busy for you and your family, and I tend to do it in the evening while watching TV or doing homework.

3. Do infusions hurt?

No. I use numbing cream. I leave the numbing cream on my skin for about 45-60 minutes before I start my infusion.

4. Can I walk around with a needle or needles in my body during infusions?

Yes, but that is up to you and how comfortable you are doing that. When I was younger, I tended to sit, but now I am comfortable walking around with my needle in my leg. The more you move around the quicker your medication is absorbed into your body.

5. What happens if I stick myself into a vein?

You need to re-stick yourself with a new needle.

6. How long does the medicine take to be absorbed into my body?

This will depend on your weight and what type of medication you are taking. My infusions from numbing to end of infusion are 2 hours.

7. Can I stick myself and draw up my own medicine?

Yes, you can. When I was younger, my mom always did it for me. Now, I do it myself as I prepare to eventually leave home for college and therefore need to make sure I am

comfortable doing everything by myself.

8. Will I have to have infusions for the rest of my life?

As of right now, I will need infusions for the rest of my life, but I am hopeful there will be a cure for Common Immune Deficiency Disease.

9. How do you organize your medication when you receive it at home?

I reuse the plastic bags that the supplies are sent in. I divide medicine and supplies into weekly plastic bags. Each of our bags has 1 vial of medication, 2 types of tubing, 1 large syringe, 1 spike.

10. Should I have any extra supplies on hand?

Yes. There have been times that tubing does not work, or we have to re-stick the area due to hitting a vein.

11. Can I travel with my medicine and supplies on a plane?

Yes, you are allowed to travel with your medicine and supplies. Since you will not be traveling with a Sharps container, I wrap it up securely and take it back home to dispose of properly into a Sharps container.

12. Can I skip or adjust my day of medication?

Skipping a week of medication is not recommended since you will not be protected from your environment. You are allowed to adjust your day of medication but try to keep the day of infusions as consistent as possible.

13. I have been on my medication for quite a long time, can I come off or can I stop taking it during the summer?

This will need to be discussed with your doctor.

14. Why is it important to take my medication as prescribed?

Taking your medication as prescribed is important for controlling our disease, treating temporary conditions and overall long-term health and wellbeing.