Q&A with Carol Ernst, RN — a mother of a teen
with PI
Carol Ernst is Director Consumer Advocacy PIDD at
BioRx and a mother of a teenager with primary immunodeficiency.
When was your daughter diagnosed with PI?
Emily was sick from the day she was born. By the time she was a year old, we knew something was wrong. We’d see other kids crawling all over the floor, putting things in their mouths, and they’d be healthy. But it seemed like every time we went out in public, Emily would get really sick. Being a nurse, I knew something was wrong. We went to doctor after doctor, but she wasn’t diagnosed until she was 3½.
When did Emily start Ig infusions?
As soon as she was diagnosed. But the IVIg made her feel awful. She’d get really severe headaches, chills, flu-like symptoms, and nausea. Plus she still got sick with pneumonia and sinus infections when she was on the IVIg.
When did Emily start Vivaglobin® therapy?
In 2001, I met Dr. Mel Berger at an IDF breakfast. He spoke about Vivaglobin®, and I knew we needed to try it. Emily was one of the pioneers — she started on her Vivaglobin® therapy during the Vivaglobin® clinical trials.
Did you encounter any reluctance/resistance with Emily when she first started Vivaglobin therapy?
Emily was very reluctant to start therapy — even though she had such awful side effects from the IVIg. I think it was her age (10) and the fact that kids don't like change. Plus she loved her home care nurse and was afraid she would never see her again. We tried to rationalize with Emily that she needed to try this new method to see if she felt better. We were trying to not only eliminate the side effects but also to make her IgG levels more stable so she would be healthier. The first 8-10 infusions, she was not happy and not very cooperative, and she was unwilling to do any of the infusion herself. But she soon realized that she didn’t have side effects with Vivaglobin® and she liked that very much. She also had more energy and wasn’t getting sick as much. She finally knew what it was like to feel good.
How did Emily do on Vivaglobin® therapy?
It was awesome. She was so much healthier. No pneumonia. No bad sinus infections. She went from missing 27-30 days of school a year to missing just 1-2 days a year. It changed our lives. She had more energy, and no side effects.
No injection-site reactions?
She had some redness in the beginning. Now she has none at all.
How did Vivaglobin® change your lives?
Emily became much more active. She joined the swim team and the Latin Club. She was editor of her school newspaper and graduated from high school at 16. She’s now a freshman at the University of Michigan.
When did Emily begin self-administering her therapy?
By the time she was out of the clinical trials study, she was doing all of it herself. We slowly had her do certain parts of her infusions until she got to the point where she did everything herself. We used the motivation of her going to camp for 2 weeks during one summer before she turned 13, but told her she could only go if she were able to do her infusions herself.
How have your experiences with your daughter affected your interactions with patients with PI?
I really understand what patients are going through — what their lives are like. I know they’re scared, and I try to encourage them. I use Emily’s life to motivate them.
How do you motivate patients?
I tell them, “You’re going to have the freedom and autonomy. You’re going to feel better, so you’re going to have a more active lifestyle or a better lifestyle.”
I tell them that Emily has been self-infusing since she was 13. They say, “If a 13-year-old can do it, I can do it!”
How else does your approach build patients’ confidence?
I encourage them to work through any problems they may have. I tell them we can adapt and tweak the Sub-Q self-administration process to make it work for them.
Are your patients’ experiences similar to Emily’s?
Like Emily, I find patients are healthier on Vivaglobin®, because their levels are more maintained. They have so much more energy.
If patients have problems, I encourage them to work through them. For example, if they’re infusing on their belly, we can try the legs. We can increase the number of sites. We can use numbing cream, which works great for adults. There are so many ways to make it work.
What advice can you share that might help a nurse colleague who is working with a challenging patient?
Patients are just scared. There’s nothing worse than when a patient starts off by saying, “I’m scared to death of needles.”
I try to be as open and accommodating as I can. I tell patients, “It might not go perfectly the first time, but we’ll stay with you and help you. We’ll get you through it.”
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