Being prepared means my PNH essentials go everywhere I go

Anything from antibiotics to a thermometer go in my 'everything' bag

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by Erin Fortin |

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When I started taking Soliris (eculizumab) after being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was told there was a risk I could contract meningitis, which scared me.

I began to make sure I carried my preventive antibiotics with me, and that I had a thermometer so I could check for fevers that might indicate if I’d come down with this serious illness.

Soon enough, the list of items I wanted to keep with me began to grow. I quickly added an over-the-counter pain reliever, pain patches, and other things.

I carry different purses and bags, depending on where I’m going and what I’m doing. I have my work purse, my “going-out” purse, a backpack I bring to outdoor events, and a small purse I grab when I am running out the door.

This became a problem when it came to keeping my growing list of PNH essentials all in one place. Because my essentials wound up being carried around loose in different bags, remembering to grab everything often resulted in me forgetting certain things.

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Keeping my PNH essentials all in one place

I started putting these items in a sealable Ziploc bag, so they were all together. Whichever purse I used for any given day, I made sure the Ziploc bag was in it. Eventually, my mom found a clear toiletry bag that was a bit classier than a Ziploc. I still use it and have found that, because it’s see-through, it’s easier to rummage around in to find what I need.

This toiletry bag has become my “everything” bag. I compare it to Mary Poppins’ duffle bag that had anything you could possibly need in it. I’ve added personal items and first-aid gear that comes in handy when needed. My everything bag has made living with PNH a lot easier and it puts my mind at ease to know I’m not forgetting anything. I can grab it quickly if I’m switching purses or if I’m out of the house and a symptom arises. I know I can deal with it immediately instead of waiting until I get home.

I keep my medicines in my everything bag, of course: penicillin and ciprofloxacin as preventive medicines for meningitis; over-the-counter extra-strength Tylenol for sudden headaches or pains; and EMLA numbing cream (lidocaine 2.5% and prilocaine 2.5%) for blood draws. Some of the other medical items in my everything bag are:

  • Thermometer, to check for meningitis fever
  • Patient safety cards provided by the pharmaceutical company that makes my Ultomiris (ravulizumab-cwvz) treatment
  • My health insurance card and driver’s license
  • Band-Aids
  • Alcohol pads
  • Cough drops
  • Pain patches.

I also keep some personal items in my everything bag, such as emergency money, a phone charger, a pen, hair ties, lip balm, travel-size scissors, tweezers, and nail clippers.

I’ve found it’s good to have all these items accessible no matter where I am at. There is a game typically played at bridal or baby showers called “What’s in your purse,” where you get points for having obscure items. I usually win because of my everything bag!

What PNH essentials do you always keep with you? Please share in the comments below.

Note: PNH 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 PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.