What’s in my bag? Wallet, keys, and a CF emergency kit.
Forget those sleek little purses and trendy belt bags
I’ve always carried a heavy purse. Stay with me here.
Years ago, when I was waiting for a double-lung transplant, my mom would often accompany me to my doctor appointments. She’d graciously offer to carry my bag, but almost always commented on the weight. “What the heck do you have in here?” she’d ask. “Everything but the kitchen sink,” I’d respond.
In addition to the usual items you might find in a woman’s purse — wallet, phone, keys, and lip balm — mine has always doubled as a mobile emergency kit for my cystic fibrosis (CF).
I was never an official Girl Scout, although I did spend a few years as a Brownie. But between my years as a nurse and a lifetime of living with the unpredictability of CF, I learned early on to be prepared for anything. I don’t leave the house without items that my healthy peers rarely have to think about.
For instance, I’ve always carried fast-acting glucose tablets, along with carbohydrate and protein snacks, to manage CF-related diabetes. I’ve experienced numerous hypoglycemic episodes in the past, so having these on hand is a necessity for me. In case something fails or gets disconnected, I pack backup supplies for my Dexcom continuous glucose monitor and my Tandem t:slim insulin pump. A backup glucometer comes along, too, in case I need to double-check or troubleshoot my pump.
Water is always a must. Even before my transplant, I struggled with coughing fits and was prone to dehydration, so I learned to keep a bottle (or three) of water with me wherever I go. Since my transplant nearly five years ago, my healthcare team has encouraged me to drink bottled spring water only. I also have chronic kidney disease, so hydration is key for me.
Before my transplant, I kept a portable nebulizer and a bag filled with albuterol doses, mouthpieces, and spare tubing in my car. A few extra doses of albuterol were thrown in my purse as well. I kept an extra nebulizer machine at work for midday treatments.
I also relied on supplemental oxygen until my transplant. The strap of the portable Inogen concentrator added another weight to both my shoulders and my mind. I also packed a pulse oximeter to monitor my oxygen saturation and heart rate.
Wisdom, experience, and necessity
Post-transplant, the list is shorter — but the purse is still heavy. I no longer need oxygen or nebulizer treatments, but I still carry diabetic supplies, snacks, a pulse oximeter, hand sanitizer, an N95 mask, and plenty of bottled water. Sometimes I even pack my next dose of transplant medication if I’ll be out for more than a few hours, because you never know.
When I’m out with friends, I’ll glance at their sleek little purses or trendy belt bags and feel a pang of envy and sometimes self-criticism. (Why can’t I travel light like they do?) The emotional heaviness creeps in, and I question myself, wondering if I’m overthinking — and overpacking. But then I remind myself that I don’t carry these things because of paranoia, but rather wisdom, experience, and necessity. This is what survival and thriving look like for me as I continue living with CF.
My purse may not be light, but neither is CF. That heavy purse holds the tools that keep me going both physically and emotionally. And for that, I’m grateful.
Note: Cystic Fibrosis 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 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.