Letter carrier and supplies used to take over my kitchen. Syringe boxes, Betadine swabs, dressing kits, monthly Sharps containers, and box on postman box arrived and needed to be organized and tidy. The number of articles was overwhelming. Sometimes the boxes would stay closed for a few days until I finally gave in and started unpacking. It was a monthly feat.
With the advent of Hemlibra (emicizumab-kxwh), the amount of packaging and supplies has been greatly reduced. One small box per month equals at least 10 large boxes in previous shipments. Just tearing up the cardboard boxes and throwing away the packing peanuts resulted in a huge amount of waste.
Before Hemlibra, I had designated a closet in the basement to house all the letter carriers and supplies. Inside the closet were large stackable plastic drawers that kept everything tidy. I could easily take inventory and write down the items I needed. I learned early in my journey of raising two sons with severe hemophilia that organization was key to coordinating their care, especially since their treatment plans were very different.
In my current house, there is no room for a separate closet for the postman and supplies. Everything my youngest son, Caeleb, needs for his monthly Hemlibra injections fits in a small box on the baker’s shelf, along with two boxes of medicine in the fridge. It’s as simple as that.
I spent a fair amount of time browsing through old supplies. I had a drawer full of dressing change kits, more 60 cc syringes than I could have used in my life, and an obscene number of alcohol swabs. I found a vet who took various syringes and donated the majority of my supplies to a church mission team doing medical work in Juarez, Mexico. But what about the drawers?
The drawers are stacked in the garage and covered with a film of dust. The weight of the items placed on it pushes the drawers down, forming a depression in the middle. To open the top drawer, you have to manipulate the vacuum by pressing upwards. They are only open when my son is looking for a mask to wear at school.
There are still syringes, alcohol swabs, a variety of braces, stretching bands and junk in the drawers. Hope I can get to the point where I feel comfortable dumping the content and saying goodbye to them. I’m just not ready.
For some reason the drawers remind me of old times that aren’t necessarily worthy of reminiscence. They represent what hemophilia used to be like and remind me that this disease is still a part of my life. It will never change.
The drawers symbolize years of pain and struggle. The chaos of caring for two sons with hemophilia is shrouded in them. Part of me thinks that when the drawers are pulled out, hemophilia may become more prevalent in my life.
I am getting closer to the final elimination of the drawers. I hope my sons continue to find it easy to take care of their bleeding disorder. Sometimes it’s good to keep little reminders of what was on hand.
To note: Hemophilia News Today is strictly a disease news and information site. 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 doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard the advice of a medical professional and do not 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 stimulate discussion on matters relating to haemophilia.