The Last Bucket

The Last Bucket

 

I have a few rituals on Sunday evenings. I check to make sure clothes are washed and ready for the week, I set the menu so that we have a plan for dinner throughout the week, and I fill the infusing bucket and bring it to the main floor of the house. When these things are in order, the chance of my week going well is pretty good. If one of these items is not in check … then all bets are off.

(Photo by Cazandra Campos-MacDonald)

Daily infusions have been a part of our lives for years. Caeleb catches the bus at 7:20 a.m., so having all the items needed to access his port close at hand is very important. Except this Sunday was different. I grabbed the bucket and started to count out Huber needles, syringes, flushes … and I stopped. “This might be the last bucket that I fill up.”

On Friday, I received the email that Hemlibra (emicizumab-kxwh) has been approved and we may start as early as this coming week. I should be excited, right? So, why did I have a moment of sadness when I realized that the staggering amount of supplies that we use each week will now be reduced to only a few items that will be needed on a weekly instead of a daily basis?

My head knows that the results of Hemlibra have been phenomenal. It has changed the lives of people who have lived with some of the most severe complications with inhibitors. I know this. I’ve seen it. But moving from a product, Alphanate, that has allowed Caeleb to live bleed-free for a few years is hard to do.

If Hemlibra works well for Caeleb, it will involve a once-a-week, subcutaneous injection. Just the amount of medical waste alone is amazing. I just can’t put my head around it. I think it is one of those things that is so incredibly life-changing that you must experience it to believe it.

Some people leap before looking. They throw caution to the wind and move forward with adventure and excitement. They jump on board with the newest factor on the market with the hope that it will improve their quality of life. Sometimes, these people are disappointed because the product does not deliver the desired results and they don’t have a new possibility prepared.

Others look before leaping because they want to know how to answer the possible “what if” scenarios. If there is a possibility of something going wrong, they want to be prepared. These are the folks who wait and see before switching to a new product. They want to gather as much information as possible, see how the product fares in the marketplace, and decide after a significant amount of time has passed.

Everyone is different. Whether you are a looker or a leaper, you are the expert in your care. Ask questions. Look for answers. And never stop looking for what can give you and your loved one with a bleeding disorder a better quality of life.

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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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Cazandra Campos-MacDonald is a motivational speaker, writer and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra's older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (21) and Caeleb (11) in Rio Rancho, New Mexico. You may follow her blogs and view her TEDxABQ talk at www.cazandramacdonald.com.

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