The Longest Day of the Year

Annie Dixon avatar

by Annie Dixon |

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I came downstairs last Monday morning, feeling better rested than usual. The end of daylight saving time that weekend had given us an extra hour, and I woke up at 6 a.m. more easily than usual — naturally, even. I put the coffee on, parked myself in front of the computer, and got a head start on the work week.

Two hours later, I was feeling smugly accomplished and ready to bring my husband, Ronald, into this new time zone. I poured his glass of V8, added a spoonful of olive oil and a squirt of lemon juice, then opened the medicine tin. And there it was on the top of the stack: the pouch labeled “Sunday Evening.” The best laid pills had gone astray.

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Daily rituals

In the years we have been living with my husband’s aHUS, I sort out his pills every week for the next seven days. There are prescription drugs as well as vitamins and supplements. Prepping the doses keeps me on top of inventory, with time to call in refills or reorder the OTC items. But most importantly, this ritual is designed to integrate his aHUS medications into our life as inconspicuously as possible.

Each morning, I bring juice and a packet of pills upstairs. I take his stats: temperature, blood pressure and pulse, oxygen level, and blood sugar. Then he takes his pills, and we get on with breakfast and our day. Each evening, he retrieves a packet of pills and takes it along with whatever he wants to drink, be it water, iced tea, or Guinness. Then we get on with dinner and our evening.

Saving a life, living with disease

When he was first hospitalized over five years ago, it seemed he was always hooked up to at least one tube, whether for an IV, oxygen, or plasmapheresis. At the same time, doctors were constantly adjusting his drugs and diet, as they balanced the prescriptions and nutrients to get his blood flowing and organs functioning properly. At discharge, I learned to give him shots and flush his PICC line twice daily, while planning our schedule around infusions at the medical center every two weeks.

From saving his life to living with his rare disease, his medical regimen has been significantly simplified. He is down to eight pills, twice a day, some of which are just supplements that everyone of a certain age takes. Still, the routine and the record-keeping is a bit tedious. And it is a constant reminder that we live with an incurable condition and potential medical crises.

What a difference a day makes

Realizing he had missed half of his Sunday medications, I paid particular attention to the Monday morning stats. A skipped dose could cause changes in his blood pressure or sugar, which might trigger his overactive immune system. Fortunately, only one figure was elevated, but it was enough that he noticed. I explained that he had forgotten to take his pills. There was no real cause for worry, just a wake-up call to be more diligent.

While he kicked himself for the oversight and I wondered if I should take responsibility for administering evening meds, I realized it was not all bad. He had not just forgotten his pills, he also had forgotten he was sick. That was a great way to have spent the longest day of the year.

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Note: aHUS News 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 other 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.

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Shirley Hunt avatar

Shirley Hunt

Thanks for sharing!!

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