Collecting medical assistive devices is part of living with hemophilia

The first thing you’ll see when you walk into my storage shed is an all-terrain knee scooter. To the left, there’s a wheelchair, and to the right, a walker. Moving to my bedroom closet, you’ll find crutches, multiple canes, a walking boot, ankle and knee braces galore, Ace bandages, self-adhesive wrap, elbow braces, a hip brace, an Aircast system with Cryo/Cuff coolers for my ankle, knee, shoulder, and hip, and a sling.

But wait, there’s more! My closet also houses my sharps container, needles, syringes, Band-Aids, alcohol wipes, and sterile drapes. Did I mention I have a full drawer in my refrigerator dedicated to storing the factor VIII (FVIII) I take every 48 hours to prevent bleeding with my hemophilia A?

It may appear as though I have a problem. From the outside, it looks like I hoard medical equipment. To an extent, I suppose that’s true, but it’s also a necessity.

In this way, some of us with hemophilia are a bit different from the general population. I had a friend who got a walking cast, a knee scooter, and crutches after injuring a foot. Once the injury had healed after a couple of months, my friend gave away or tossed the devices.

Why do I keep all of the medical assistive devices that I acquire? The simple answer is that I’ll likely require them again, and I can’t afford to keep purchasing them over and over. Additionally, it’s helpful to have the tools I need at home and not have to wait for a doctor to prescribe them. Sometimes I’ll need a device for weeks or even months, and other times, it’s just for a day or so. When I need it, I really need it, so it’s important to have the device readily accessible.

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Subluxation struggles

Recently, when my hip subluxated (partly dislocated), I wasn’t able to bear weight because of the pain and had to use my walker. Thankfully, I only needed it for one day until my hip slipped back into place.

Five months ago, I took up tap dancing. It’s been so much fun! When I first started, I lacked ankle strength and my muscles needed some developing. Like my hip, my ankle is also prone to subluxation. When it subluxates, I use a walking cast for a few hours to help the joint realign so it can slip back into place.

For the first few months of tap, I needed that walking cast after almost every lesson. By using it immediately after my ankle subluxated, the joint realigned quickly. This adjustment was critical for preventing bleeds that can occur when my ankle is out of place. After a couple of months, my ankle strength improved, and I no longer experience subluxations while I’m dancing.

Having the walking cast has allowed me to continue taking tap classes. If every class left my ankle subluxated for days, I wouldn’t have been able to pursue this new hobby that I really enjoy. I’m so glad there was a solution that enabled me to keep dancing.

Painful bleeds

The most painful bleeds I experience are shoulder bleeds. Sometimes they hit my shoulder joint and sometimes the muscles. When these bleeds happen, even the weight of a bedsheet can exacerbate the pain. In these moments, I’m so thankful to have a Cryo/Cuff that wraps around my shoulder and provides both pressure and cold therapy. It helps lessen the pain while I wait for FVIII to kick in and stop the bleed. At times, the pain is unbearable without it.

I hope I’ll never need to use any of these medical assistive devices again, but living with hemophilia means there’s a high probability they’ll continue to be necessary from time to time. I’m thankful I have the ability to store them so that they’re available when I need them. That enables me to shorten the healing process and save myself time and money.

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, and are intended to spark discussion about issues pertaining to hemophilia.