Performing My First Self-infusion Was Empowering
With so many injuries lately, possibly because of a lack of exercise, I found it necessary to finally learn the ropes of self-infusion.
Self-infusion of critical factor is important for me to prevent and treat bleeding episodes. As much as I have wanted to learn the craft, I admit that I needed someone to guide me.
Initially, my dad wasn’t in favor of self-infusion because he was afraid something might happen mid-procedure. But an opportunity presented itself when I had another hip injury and my brother, a doctor, happened to be home.
My brother happily gave advice about how to make the most of each needle pierce. I’ve dealt with self-infusions before, but they’ve always failed. So I’m glad to have had this opportunity to learn under the wing of a doctor. Much of my anxiety was extinguished thanks to his guidance.
I always had been afraid I might go too deep or poke something I shouldn’t. But I was able to gain confidence and finally attempt it.
Sadly, my session with my brother wasn’t entirely successful. Eventually, I had to allow him to do it because I was already in pain. But I vowed that the next time I suffer from a smaller injury, I’ll perform the infusion. After all, that is how we learn and master the technique.
Fate decided to pay me a visit when I suffered another bleed in one of my left iliopsoas muscles. I knew I quickly needed my dose of factor, but the only ones in our house were my wife, Cza, her cousin, our nanny, and me. That meant that either Cza or I had to perform it on our own, without supervision.
The situation was tense because we were dealing with a major bleeding episode. But we knew we had to keep our cool, which is twice as difficult for Cza because she has chronic anxiety. I happily offered to try. Holding a needle in my hand and preparing to infuse myself gave me a satisfying sense of control.
To keep my cool, I repeated a few mantras in my mind, including, “You know your body best,” and “Infusing will make you complete. The needle isn’t just a needle, it is the thing that has been missing from your hand.” Silly as they might sound, they actually helped keep things light and relaxed.
The first few tries didn’t really pan out well, but we eventually got the hang of it. We felt great pride after the first sign of backflow. A small amount of blood flowing back into the needle’s tubing meant the needle was in and the IV was ready.
Then and there, with an IV primed, tension disappeared, and it was time to finally infuse the needed factor. During the entire session, I felt a strong sense of pride and empowerment. I realized that the ability to infuse myself opens us up to a new world of opportunities that wouldn’t be there if I still relied on a doctor for treatment.
However, I must keep in mind that I am epileptic. I must remain vigilant of episodes if I want to assure that no incidents will occur. A single seizure might ruin the entire procedure. Breaking the vials containing the factor and injuries involving needles are present dangers. We must be careful.
My parents have recently discovered that I can perform infusions on my own. To my surprise, they didn’t seem to have much apprehension. As long as I know how to be responsible with each session, I’m certain that everything will be OK.
This experience has given us a greater sense of freedom as husband and wife, and a healthy pride for me as a person with chronic illnesses. Overall, it was an incredible feeling to have met this milestone in my life as a hemophiliac. I look forward to having more of these experiences so that I can grow.
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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to hemophilia.
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