Emily was profiled on my blog, under the patient profiles section about 2 years ago.   She has just finished her freshman year of college and is a pre-med major.   She uses Vivaglobin and talks about doing Sub Q here.

Emily is also the daughter of our Director of Consumer Advocacy, Carol Ernst.   They are a remarkable duo.

This Q & A was originally written for CSL Behring clinicians who are teaching patients how to use Vivaglobin.

If you are trying to decide whether or not to switch from IVig to SCig (Sub Q) this interview with Emily might be helpful to you:

You were diagnosed with primary immunodeficiency (PI) as a toddler. What is your earliest memory of your Ig therapy?
My first coherent memory was when I was 3 or 4, sitting behind the recliner, screaming at the nurse that I wasn’t going to get my IV. I assume, at some point, someone pulled me out from behind the chair to infuse my therapy.

What was most upsetting to you about your IVIg?
It was probably a combination of the needles and the headaches.

When you were 10, you started Vivaglobin^®. What do you remember about that change in your Ig therapy?
I remember not wanting to do it. My parents entered me into the clinical study. If it was my decision, I wouldn’t have done it. But it was my parent’s decision at the time, and the right one.

Were you afraid of the needle?
I wasn’t afraid of the needle. I was really nervous about getting the injection in my side rather than the IV. It wasn’t normal to me.

At first I got the injections in the stomach in the front where I had very little subcutaneous tissue. Eventually we moved it to the side, where I have a little more sub-q tissue. That was better.

How have your thoughts or feelings about your Vivaglobin^® therapy shifted over the years?
I like it a whole lot better now. I’m so glad that my mom managed to meet Dr. Berger and to get me involved in the study. If it weren’t for Vivaglobin^®, I don’t know how I would have been able to be so far away from home, at college, living in a dorm.

Why do you like it better?
With IV, I still got sick a lot. I am so much healthier now. With Vivaglobin^®, I’ve missed only 1 day of college. In high school I probably missed 3-4 days of school a year. Back when I was on IV, I would miss 25-30 days a year.

When did your feelings toward Vivaglobin^® become more positive?
I was reluctant for probably a year or two. I refused to learn to do it myself. Finally, about 2 years later, I really wanted to go to overnight summer camp for 2 weeks. My parents said I could go to camp if I took complete responsibility for infusing my own therapy. I was probably about 13.

When I started doing it myself, that helped a lot. We switched needle sets which also helped. Originally it was this spring-loaded machine that shoots into you. The plastic wing set, I’ve been using for 3-4 years, it just pushes the needle in. The spring thing hurt more than the needle actually going in.

Tell me about learning to self-infuse your Vivaglobin^® therapy.
It’s really not that difficult. You put the needle on the syringe. Draw up the medication, and connect the tubing set. You prime it, and then you just inject it.

When I first started, I drew it up first, and then my mom would inject me. Eventually, I would do it, and my mom and dad would be around. They don’t even need to be around now.

What advice would you give to nurses who are teaching patients how to self-administer Vivaglobin^®?
It’s definitely not a process you can rush. For me personally, my mom was a nurse and my dad was a doctor. That benefited us a whole lot. If they don’t have that medical background, it can be a completely foreign process to them. It just can’t be rushed.

Have you had any problems with your therapy?
Sometimes I have a little site swelling right afterward. It’s not painful. And it goes away really fast. It’s not really a problem. Sometimes there’s redness from the tape. I can’t really come up with any real issues.

You’re a busy college student, how do you find time to work your therapy into your life?
It’s not like I have to work anything in. It takes about 1 to 1-1/2 hours. I’ll take the medication out of the refrigerator. Go to class. Come back. Just draw it up. Put it in, and do homework with it in. Sometimes I go to the cafeteria with it in.

I haven’t gone to class with it in. I just choose not to, because I’d have to carry my sharps container. Also, I get uncomfortable and a little stiff to sit with the needle in for a long time. The medicine absorbs better if I move around. If I’m just sitting, it absorbs more slowly. It gets a little stiff, and it’s sensitive to the touch.

How do you keep track of which days you’re supposed to infuse?
I write it down on my school assignment calendar. It’s really a bad idea to postpone it.

I just make sure I have time. If it’s on a Saturday, I just make sure I do it before my friends go out. I plan ahead.

Half my friends have been around when I do it. I don’t really care. I’m like, whatever.

What tips would you offer other patients about staying adherent with their therapy regimen?
Use a calendar or a log to keep a record. Don’t let it stop your life. Some people worry that it will take up time. Maybe it’s because I’m younger and more open-minded, but I’m going to do what I want. I’m not going for a jog with it in. But I do stuff. I hang out, go to meetings, walk to campus, go down to a friend’s dorm room.

What else do you think would be important for Vivaglobin^® nurses to know?
Patients are definitely going to be nervous — no matter how old they are. You probably need to convince them to do a few infusions. If they stick with it, they’ll probably find they’re healthier with Vivaglobin^®. You can run to the store or go to eat. With IV, you ARE stuck. You’re attached to this enormous pump and stuck in the room.

I think nurses should convince patients to stay with it long enough to see how it benefits them.

If the nurses reading this article could only remember one thing we talked about, what would you think is most important for them to know?
Probably the fact that Vivaglobin^® is a better choice in the long run. And that patients should stick with it, because it’s less intrusive in their lives.

Emily’s Advice includes:

• Patients are definitely going to be nervous — no matter how old they are.
• Learning self-administration techniques is not a process you can rush.
• Encourage patients to stick with their therapy long enough so they can see its benefits.
• Use a record or log to plan ahead and keep track of when therapy is due.
• Sitting still in the same position during an infusion can cause stiffness or tenderness at the infusion site.
• For improved comfort, infuse into a site where patients have more subcutaneous tissue.

I had the pleasure of dining with 3 CVID patients in Savannah last week. We talked up a storm. It is always enlightening to meet patients and share stories. Gini Lea, Mandy and Jen made me feel like I talk in slow speed being from the north. We had lots of fun and lots of laughs.

Gini Lea is an honors biology teacher. She has remarkable strength and intelligence. She has fought many health battles, including loss of hair, only to keep bouncing back like the everready bunny. Whenever she was younger, she was on treatment, then stopped, then started again. She finally entered a clinical trial for Vivaglobin, and has been doing Sub Q ever since.

Mandy is the mother of 2 boys, 9 months and 5 years old. Mandy has been sick since she was around 6 years old. She was in and out of hospitals about once a month as a child. She started IV’s when she was 8 yrs old. She is very excited that she finally started Sub Q about 5 weeks ago and claims “I love it, I would never go back”. She happily admits that she no longer has that last week before the IV when she always got sick. Now that she is doing Sub Q with Vivaglobin, she “just wants to get up and GO”!

Jennifer has a 7 yr old daughter. Jen was diagnosed at 3 yrs of age. She started with IM shots, and began IV when she was 7. She has battled pneumonia so many times, that she had to have a lobectomy a few years ago from multiple bacterial infections. She currently does monthly IVig, but is considering switching to Sub Q.

The lovely ladies from Savannah are pictured from left to right:

Jen, Mandy, Gini Lea and the gremlin peeking from behind is me.