Prophylactic Treatment Helps Me Conquer Home Improvement Projects

Shellye Horowitz avatar

by Shellye Horowitz |

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When it comes to home maintenance and improvement, there are several types of people. Some look the other way when their home needs upgrades due to a lack of time, money, energy, or interest. Others coordinate with repair people who come in and do the necessary work.

Do-it-yourself people look online, figure it out, and do the work on their own. I am definitely a do-it-yourself gal.

I used to be greatly limited by hemophilia, but that’s no longer the case, thanks to proper treatment. For me, that means prophylactic treatment, which involves infusing replacement factor on a regular schedule to prevent bleeds.

Some people with hemophilia do not need treatment at all, some only need it for injuries or surgeries, and others need regular doses to keep them safe.

These days, home improvement projects abound, and I am successfully conquering them all. It is incredibly satisfying.

Gravel vs. shoulder

Last December, we had a lot of flooding in front of our place. A wonderful neighbor arranged for a gravel dump to be shared by three homes. We just had to shovel it ourselves to the correct spot. The gravel crashed down the chute and formed a huge mound on the ground.

As we grabbed rakes and started to attack the pile, I realized that I would need to lay concrete pavers before raking the gravel. I quickly measured, hopped in the car, and left to purchase pavers.

On the way home I asked my 17-year-old to look up how to lay pavers online. She read the directions to me as we drove home.

The pavers look amazing! The gravel does, too, and we no longer step in puddles when it rains. However, I did end up with a shoulder bleed after days of shoveling.

Three weeks later, I had another bleed after cutting a particularly stubborn spaghetti squash. (That was embarrassing. Imagine telling your healthcare provider that you were taken down by a squash!)

Gravel — 1, Shoulder — 0.

Fine-tuning my plan

After those incidents, I reviewed my prophylactic treatment logs and saw a clear pattern. I had been infusing twice weekly on Mondays and Fridays. Most bleeds caused by activity occurred on Fridays, when it had been four days since my last dose. I asked my medical team if I could infuse every 72 hours instead to avoid those day-four bleeds. They were open to trying.

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This spring I ripped apart pallets and nailed them back together to make planter beds for vegetables. Planting season is always so much fun! Nails can be stubborn, but I persisted and would not let them win. I finished building the beds.

Shoulder — 1, Garden — 0.

No bleeds occurred while I was building the planters. It was two days after prophylactic treatment, and my body was well protected from bleeds.

Paint project time

Recently, I began another home improvement project: tons of painting! Historically, painting has always been difficult for me. By the end of the first day, my hands were swollen and sore. I couldn’t grip the paintbrush due to diminished muscle strength and limited mobility.

This has happened each of the half-dozen times I’ve painted a home since my early 20s. Initially, I had no other explanation, so I blamed generic arthritis, which runs in my family.

Apprehension mounted as I began to paint. It was a huge project that would take two to three weeks of daily work to accomplish. Summer vacation was ticking, and I had one month left to complete it all. I worried my hands would be unable to keep up with the timeline, but I took the plunge and started the project anyhow.

Day one of painting went beautifully, as did day two. My pattern of “arthritis” slowing me down or stopping me did not manifest. While my hands were a bit sore and stiff, I could still paint. By the end of day eight, I had to reframe my prior experiences.

Rethinking past understandings

It seems that arthritis would be a bigger issue now that I’m older, which also makes me question my former conclusion. I wonder if prior painting projects taxed my hand joints and triggered bleeds. The difference this time is that my prophylactic dose was in my system and protected my hands when I pushed them.

In the last year, I’ve learned that my limits are changing thanks to prophylactic treatment. I’m no longer getting bleeds every three to six weeks. Understanding new limits is my focus. I’m excited to say I have much more freedom!

Maybe you have a home project calling out to you. If you don’t want to do it, that’s OK. However, if it’s calling your name, you may be able to fully engage by ensuring you have the protection you need.

Knowing I built or fixed something on my own feels satisfying. I hope you have the opportunity to experience that, too.

Happy home improvement!

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

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