Severe weather reminds me of the importance of electricity
Power outages can have a serious impact on CF care
Cystic fibrosis (CF) is a complex disease that affects each of us differently. However, many outside factors impact our lives in ways healthy people often don’t realize. In this column, I want to spread awareness of one of the many challenges and stressors involved in living with CF: the dependence on electricity.
As of this writing, I’ve been without power for 48 hours. Two nights ago, a severe storm passed through our town in southeastern Pennsylvania. This kind of extreme weather has become more common here in recent years.
It’s been a rough 48 hours. We had no lights, water, Wi-Fi, refrigeration, television, or air conditioning for the first 24 hours. Our generator broke recently, and despite his efforts, my husband couldn’t get it working until last night. I am grateful the generator has provided us enough power to plug in the refrigerator, one air-conditioning unit, and a lamp.
Our area has faced unusual heat waves lately, with the heat index over 100 F and extremely high humidity.
My husband works outside in the heat every day, so coming home to no air conditioning left him depleted. Although I was also without AC, I was resting at home all day and shielded from the sun. After my husband got the generator working last night, we camped out in the living room, where our one working AC unit was, and it felt like heaven.
We have well water and a septic tank, so without power, there is no running water. I had to discard most of the food in the refrigerator before we got the generator powered up.
Trees and large branches are down on seemingly every street in our town and the next, including many in our yard. It will take a few days to cut them up and clear them out. Many stores and gas stations are closed due to the power outage. Our pool is filled with debris, and the water is cloudy without the filtration pump running.
Still, I’m grateful
Despite all of this, the only thing that’s been on my mind the past two days is how thankful I am for my new lungs.
Before my double-lung transplant in 2020, we had a severe storm similar to this one. I was tethered to an oxygen concentrator and doing nebulized breathing treatments of several different medications for hours each day. Humidity was my nemesis. It tanked my oxygen saturation levels, making breathing even more complex and exhausting.
This storm brought me back to those pretransplant days. As brutal as it is without power now, all I feel is gratitude for being able to breathe so easily. I am thankful to walk around freely without an oxygen leash and not have to worry about maintaining power for my oxygen and breathing treatments. I no longer have to fear being unable to breathe without them.
It almost feels unnatural not to worry about lack of internet access or spotty phone reception during a storm. This was a concern before my transplant, as I might’ve needed to call the CF clinic regarding an emergency. Also, I no longer need to worry if I have enough gas in my car to make it 90 minutes to Philadelphia should I need to get to the hospital quickly.
These fears used to swirl inside of me, but my now stable health has allowed me to shed their weight.
Now that I no longer need breathing treatments, I have the luxury of not being dependent on electricity to maintain my health. Because I have cystic fibrosis-related diabetes, my main concern during this power outage was keeping my refrigerated insulin cold, which was manageable for that first 24 hours with ice. My Bluetooth continued to work, allowing me to control my insulin pump, and I’m thankful for that as well.
I know many others with CF across the country are facing the same or worse weather conditions. My thoughts and prayers go out to them. Severe weather can greatly affect our symptoms and care, especially with advanced disease. We are extremely dependent on power companies to restore electricity as quickly as possible, but even then, it may be too late to avoid an emergent situation.
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.
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