Struggling with Self-infusion

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.  

Rural hemophilia

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.

Practicing infusing with saline. (Photo by Shellye Horowitz)

Infusion lessons

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.

Too many attempts. (Photo by Shellye Horowitz)

Factor needs

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.  

More failed attempts. (Photo by Shellye Horowitz)

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.

Success with practicing infusion. (Photo by Shellye Horowitz)

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.

Continued practice

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.

Practice creates proficiency. (Photo by Shellye Horowitz)

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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