My top tips for self-infusing hemophilia medication

Originally published on Hemophilia News Today by BioNews, Inc.

Years ago, a home health nurse came to my house to infuse my medication for von Willebrand disease and hemophilia B. Treatment for my bleeding disorders is often administered intravenously, meaning it’s injected directly into a vein. I’d had surgery a few days before and needed the medication to keep my factor levels in the normal range so that my body could heal.

My anxiety was sky-high. I live in a small town, and the nurse had never heard of my medications. First, I stopped her from incorrectly mixing the medication and instructed her how to do it. Then, I watched in horror as she shook the vial instead of rolling it between her hands, as recommended by the manufacturer.

The nurse said she wouldn’t be working over the coming weekend, but thought I should be OK since I wasn’t bleeding. Unfortunately, that’s not how the medication works. I wasn’t bleeding because the infusions were keeping my factor levels high. To skip a dose while I was healing was not a good idea.

I decided I could do a better job and vowed to learn to self-infuse.

I’ve now been infusing my medication for five years. I’m horrible at it, but I’d rather stick myself with a needle 10 times than watch someone else prepare my medication incorrectly. My treatments are expensive, so I feel immense pressure to infuse them successfully. Once you mix the medication, not being able to hit a vein is a costly mistake.

My infusion tips My veins are tiny, and they like to roll. But I have picked up some tricks for finding a vein.

Take a shower. Not only do I smell nice, but the heat increases blood flow, making my veins easier to find. The heat also relaxes my muscles, which is helpful because I experience anxiety during infusions. The warm water can help soften my skin, making it easier to insert a needle. Staying hydrated makes my veins easier to find and access for an infusion. I always try infusing into my hand first, but if that doesn’t work, I turn to my feet. It’s a bit more painful, but the veins are easier to find, and I have both hands to help me. Watching TikTok or YouTube videos reminds me of the steps involved in my infusion. Sticking a needle into a vein is difficult and strange, and I like knowing that someone else is doing this, too. I always start with meditation or deep breathing to steady and relax my hands. When I’m lucky, I can go months without needing an infusion. If I haven’t infused in six months, I practice with saline to keep up my skills. I pay homage to my alma mater, the Wisconsin Badgers, and jump around. Not only do I look really cool, but the activity gets my blood flowing so my veins are easier to find.