What a good health day looks like for my husband with hemophilia

A glimpse into our everyday life when my husband isn't experiencing a bleed

Alliah Czarielle avatar

by Alliah Czarielle |

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It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed.

My husband, Jared, always an early riser, often gets up first. Today is no exception. He goes to our kitchen downstairs, contemplates what he’ll make our family for breakfast, and takes some frozen ingredients out of the fridge.

For him, it’s the start of a fairly good day.

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Just one week earlier, he had another bleeding episode, which forced him to put all physical activities on hold. But it also presented him a golden opportunity: his once-a-month chance to infuse factor.

Since prophylactic treatment is not yet available here in the Philippines, Jared only infuses factor on demand. Therefore, every bleeding episode is an opportunity for a factor top-up — a silver lining of his misfortune.

Energy levels restored after a night of rest, he jumps out of bed and starts his day with an invigorating workout. He still has factor in his body from the previous infusion, so he’s confident in his ability to move around and be active. He lays out his yoga mat, prepares a few sets of weights, and proceeds to do some high-intensity interval training, followed by moderate to heavy lifting. Thankfully, he’s managed to maintain his form due to years of staying active.

He wraps up his workout after 30 minutes. He’s feeling tired, but it’s a good kind of tired. He prepares a chocolate protein shake and rests for the next half-hour. Then he checks on the ingredients he’s laid out to thaw. By now, they’re no longer icy, and he can prepare breakfast.

In a few hours, our daughter will wake up. Jared will go back upstairs and wait for her to open her eyes while a hearty breakfast simmers on the stove. She’ll find him lying on our bed, which is right next to her stuffed-toy-laden trundle. She’ll jump on him (she is slender and light as a feather, so that isn’t a problem for him at all) and they’ll cuddle, tickle, or horse around for a few minutes before we all go downstairs as a family, have a hearty meal together, and proceed with the day’s work.

For Jared, working with no bleeds is awesome! There are no injured wrists that might bother him while he types, no bleeding ankles to elevate while balancing a laptop on his knees. He can work from anywhere — the bed, the sofa, the dinner table. He can go up and down stairs as he pleases. We can even go out together and work at a nearby café.

This is what an ideal day looks like for Jared when he’s bleed-free and having a good health day. Still, even if he does get a bleed at some point, he knows he can manage to do many of these activities with some creative adjustments.

Not every day can be a perfect health day, but we can always find ways to still have a good day.

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.


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