I have a confession: I hate to self-infuse. I am really bad at it. Well, at least most of the time I am. The multitude of blown and missed veins over the past few years have synthesized to wholly deflate my confidence with this critical skill.
I live in a rural area. My nearest hemophilia treatment center is over six hours away. No hospital in my county stocks my factor; I must have my own supply.
I moved here almost four years ago. A few months after I moved, I tripped and fell at 3 a.m. on the way to the bathroom (a whole 20 steps away from my bed). I landed hard. The hard landing was a wake-up call. What was I to do if I hurt myself at night or on a weekend and needed factor VIII replacement? I wrote to my hematologist the next day, and she set me up with a specialty pharmacy. The pharmacy would provide infusion training and factor VIII doses for my home.
In May 2016 I received my first lessons in self-infusion. I was 43. On the first day, I spent hours practicing on a fake arm with a vein (I am sure there is a proper term for that, which I do not know). I was pretty good at hitting that vein! Next, I hit an actual vein in the person training me. Then, I had to hit my own vein using one hand. With excellent coaching, I hit my vein on the first try! I then proceeded to blow the next two veins, along with my ego.
For the past three years, I have had ups and downs with infusing. In October 2016 I had to infuse for a real bleed — my hip was injured. With the nurse from the specialty pharmacy on FaceTime, giving me moral support, I infused on the first try. I was so happy! The next few times, I was not successful, and I felt horrible on evenings when I had to toss factor after too many attempts and blown veins.
In March 2017 I had a bad fall. I slipped down a flight of stairs, hitting three metal steps and then the ground on my rear end. The end (no pun intended) result was a buckle fracture of my sacrum. I knew immediately that I had broken a bone because of the pain. There was a swollen strip across my rear end where the stair had hit it; I needed factor and I attempted infusing … 12 times with no success. Two days after the accident, I finally got the factor VIII I needed when my local infusion center inserted a peripheral IV line so I could more easily administer it on my own.
I started to get dependent on IV lines because my infusion attempts did not play out well. For the next year or so, every time I had a bleed, I went to the infusion center and asked for a line to be placed. My confidence had tanked, and I did not want to waste factor VIII or any time with failed infusion attempts. Once in that time frame, after a major surgery, I did self-infuse successfully before heading to the emergency room due to significant post-surgery hemorrhaging. To this day, I am grateful for my success that night. For the subsequent three weeks, I had IV lines in my arm to continue to infuse.
Many men with hemophilia learned how to infuse at camp as children. Many women I know are struggling to learn how to infuse now. When I do infuse successfully, there is a great sense of empowerment and accomplishment. When I blow multiple veins in an infusion attempt, it can be incredibly frustrating.
I do not need to infuse on a daily basis, so I treat “on demand” when I have a bleed. When I am lucky, I can go weeks or even months without infusing. As a result, I do not get as much practice as people on prophylactic treatment. I need to practice more, and it is hard to be motivated to stick myself with needles when I feel fine. This summer, I am going to challenge myself to practice multiple times a week to become more independent with my own care. It is a critical skill to have when you’re far away from a hemophilia treatment center.
I believe in the value of being able to self-administer factor, as needed. I highly encourage my female peers to talk to their care providers about learning to infuse. One day, the skill might save their life.
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