Preparing for Power Outages as a Pulmonary Fibrosis Patient
During a video call with pulmonary fibrosis (PF) advocates last week, I was informed that the U.S. Eastern Seaboard faced some terrible weather. Severe thunderstorms left many without power for days. While this is inconvenient, a prolonged loss of power can be detrimental to the health of those requiring supplemental oxygen.
Unfortunately, preparing for a prolonged power outage is rarely something we think about until we’re forced to. This was discussed on the Pulmonary Fibrosis News Forums recently, a result of the severe summer thunderstorms along the East Coast. Those who endured power loss now realize the importance of preparing for a sudden (or scheduled) power outage, especially as patients requiring supplemental oxygen.
My late co-columnist Kim Fredrickson wrote about coping with the loss of electricity in 2017. The event highlighted how she was prepared and what she still needed to consider. While Kim used liquid oxygen at the time, which doesn’t require electricity, her house grew hot. For many of us, high humidity triggers breathing difficulties. For those living in colder climates, such as Canadian winters, the opposite is equally concerning. I’ve spoken with many PF patients who struggle to breathe in the cold.
Kim shared some practical ways she prepared for a power outage in her column, and I’d like to add to that with the following:
Keep back-up tanks available
Liquid oxygen is ideal because it’s not electricity-dependent, but it’s hard to find many suppliers. Regardless of the type of oxygen you use, it’s always a good idea to store tanks in your home in case of a power outage. I prefer small tanks (“D” size) on outings because I can carry them easily on my back. However, I use concentrators at home. Since these are electricity-dependent, I always keep a large tank filled and stored safely at home in the event of an unexpected power outage.
Emergency management response program
This may be location-specific, but I encourage everyone to look into whether their town, city, or region has something similar. I’m registered with my area’s emergency services as someone dependent on supplemental oxygen. In the event of an emergency, such as an unexpected power outage, someone calls to check on me. They also prioritize getting my power back to the best of their ability. Lastly, if a power outage is scheduled, I am notified through this program in advance so I can prepare enough oxygen for the outage.
Car charger for portable concentrator
Whenever possible, I prefer to use my portable oxygen concentrator (POC) at home rather than the big one I have upstairs for sleeping. However, the POC requires battery power and the amount of oxygen I need uses up the battery quickly. I’ve taken drives in the middle of the night when a power outage occurs so I can charge my POC using the car outlet and have access to heat or air conditioning, depending on the time of year. Plus, it’s a bonus to take a drive and not have to deal with traffic at that time!
Back-up batteries for POC
Though it might seem obvious, we’ve likely all let our devices (phone or computer) die unexpectedly because we didn’t charge their batteries. This can occur with POCs as well and has happened to me. I simply forget to charge the extra batteries when I switch them out and am left with no battery power when I need it. As a result, I now store a fully charged battery for my POC in the house as a back-up, which I use only for power outages.
Alert someone
If you live alone, it is always a good idea to alert someone in the event of a prolonged power outage. This is especially true if you require oxygen. It is both comforting and reassuring to have someone check on me when I’m without power. Even if it is my neighbor, I feel better knowing someone has been alerted that my power is out while I am alone.
Do you have additional tips on how to prepare for a power outage as a patient with IPF/PF? Please share in the comments below.
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Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Emmanuel Wittenberg
Please send all the details of all the latest news to me at
[email protected]
I am a retired Dental Surgeon suffering from IPS and want to get the correct and most helpful treatment for my condition. Hope to hear some good news from you as soon as possible
Many Thanks
Manny Wittenberg BDS
Charlene Marshall
Hi Manny,
Thanks so much for reading my columns and reaching out via the comments! You can subscribe to our PF News homepage which will give you updated emails on our published content, by visiting our homepage: http://pulmonaryfibrosisnews.com/
Hope this helps :)
Thanks,
Char.
Mike fryman
Charlene I am a newbie though I am 69. I was dx in April, am on O2 full time just uping Ofev to 150 bid tomorrow! Am a retired RN, army, private, have psych experience! Have dealt with so many medical issues But this has blown me away! Bought a big house 2 years ago, landscaped it and I kept slowing down, napping and alas coughing! What a wide open dx (ipf), so much to read absorb talk about learn! Am I doing well, is their life ahead or am I looking at tomorrow! My last PFT’s not good but my doc was impressed with my breathing(asculation)! I am also on cellcept, lucky to have great wife! Reading your comments has helped. So thank you! Death doesn’t scare me, hate what it would do to my family—so I am a spiritual fighter—have been an athlete, mtn man. Now I drop 40 lbs, eat well, treadmill until stronger. As you can tell I am a little wordy, helps to vent! I willl list your tips, hope to talk again! Be well
Charlene Marshall
Hi Mike,
Thanks so much for reading my columns and reaching out via the comments. It's nice to hear from you, though so sorry you're dealing with this cruel lung disease too! I hope the adjustment to Ofev 15mg bid goes okay, it took me a couple of tries to be able to tolerate that dose vs. the 100mg so don't give up: my body has adjusted to it now. There sure is a lot to read about/learn when it comes this disease, one of the most informative platforms I find helpful (though, I am bias of course) is our PF News forums: http://pulmonaryfibrosisnews.com/forums/ .... which is because so many amazing members are willing to share their story/help one another. Glad you have a wonderful wife with you, and keep trudging forward, none of us really know with certainty what the future will look like. Kudos to you for the weight loss and working hard at exercise- that is not a small feat, you should be proud! Feel free to write any time, glad you've found us :)
Charlene.
Holly W Patient
Hi,Char,
Great ideas, and I can't think of anything to add. Just wanted to comment that here in California, the most common problem is wildfires, and power can be off for days in windy weather, to prevent fire caused by faulty lines. Last year, people were driving hundreds of miles in search of generators. Thank you for your tips, which should help ease the extra anxiety that Oxygen-dependent folks experience during what is already a stressful time.
Charlene Marshall
Hi Holly,
So nice to hear from you - thanks for reading my columns and reaching out via the comments. Ah yes, I cant imagine the risk of power loss due to wildfires. California was on my mind (and in my heart) last year when there was those out-of-control fires, very scary. I can't imagine having to drive looking for power, I'd be using my POC in my car as often as possible. It is very anxiety provoking for those on 02 to lose power, so I'm glad my column was helpful! Take good care and thanks for connecting :)
Char.
Linda Klein
Hi Charlene, because of your young age, wasn’t a lung transplant a consideration for you?
Charlene Marshall
Hi Linda,
Thanks for reading my column and reaching out via the comments. Yes, lung transplant is an option because of my age and no additional underlying conditions. It is on the table for discussion often :)
Pat Hamilton
Love reading all your messages....its bits of info I store for future use.
Charlene Marshall
Hi Pat,
Thanks so much for reading my columns and reaching out via the comments. I'm so glad to hear the bits of information I share is helpful for you, that is really kind of you to share, thank you :)
Take good care,
Char.
George Dezendorf
HI,
I am George, I'm 70 years old and was told I have IPF in December of 2019. I am on 801 Esbriet, and have been since February of 2020. So far no side effects. I am a very active person and live half time in Southeast Texas, and half time in Southwestern Colorado. Elevations from sea level to 7900 feet. Found out I had IPF in Colorado. Had a harder time catching my breath walking up to the ski area than I have in the past, went in to see what it was, and was told it was IPS...what a shock. Been to National Jewish in Denver, and they confirmed the IPF. Not having much trouble with it as of now. Breathing is better in Southeast Texas, at close to sea level even with the humidity.
Joined the conversation and reading the comments. Seems to be helpful. Don't know really what to expect, pretty new to this IPF situation. Reading your site and the comments helps, Thanks.
Charlene Marshall
Hi George,
Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your recent IPF diagnosis as well, but glad you found us. I'm thrilled to hear that you've not been experiencing any side effects from Esbriet, I'll keep my fingers crossed that it remains that way for you! I also went to Colorado several years ago (before my IPF diagnosis) and in hindsight, had a harder time breathing there as well. I'll keep my fingers crossed for you that you remain relatively symptom free of IPF. Feel free to connect any time, and happy to hear the comments and columns help.
Sincerely,
Char.
Steve Cleland
Hi there
I have had IPF for 8 years and live in South Australia. The temperature range, which causes me serious issues is roughly 32f to over 113f. At both extremes the temperature cause me issues and power cuts are not uncommon. I can sit or rest in bed without being on oxygen as usually stay at 90 to 93% range. Depending on temperature, walking around the house can drop it to low 70s but when warm, usually 88 or so. To go to shops, i have a G3 but depending on weather, oxy has been as low as 66 to 70%. I feel ok but keep my finger monitor on so can check it as walking. Recovery is always less then 3 minutes.
My preparation for them is two fold. House and car.
In the house, it is similar to yours. The power company informs me when a cut is about to happen, and how long if known, as in the present case of all overhead power lines are being buried due to most of our annual bushfires are caused by the overhead cables being knocked over by storms. The government, under Medicare, provide an home, 10ltr constant flow machine and 4 tanks, free of charge. The portable G3s etc we have to pay for even when we also have private cover. I keep 6 battery operated lamps, and torches around the house and have 2 spare batteries for the G3. If i need to recharge the batteries, i go to the local hospital and can use a reclining chair while recharging, or as a place of rest if temperature is to high. I also have, home and car, small rechargeable that can charge from a phone charger. They were only $10 and i find that having one on my face when hot, or on a flight, very helpfull.
In the car I have my spare G3, with 3 batteries, plus a bag with a supply of all my meds in it which includes antibiotics to take if feel needed. Medications are covered on Medicare and as i live on a mix of pensions, i only pay US$4 per script, per month, with max in one year of about US$200 after which they are free. I know doing this would not be viable for many in the US. The problem with portables such as my G3 is the temperature range they operate in. 95f max is no good to me if i breakdown when temperature is over 113f. With the memory issues that can affect me when levels drop, the most stupid and annoying is going to the shopping centre but leaving the G3 at home. Duh..
The first two lessons I was given on my army parachute course apply when you have IPF:
1. Hope for the best, plan for the worse
2. Nothing happens until it happens so why worry about it.
In the army, and nursing, have seen to many give up when they were not seriously wounded or unwell. At same time, seen those who thought would die, just keep rolling along. In my State, my Consultant informed me that the longest surviving IPF clients were on 4 years compared to my 8 so far. My only meds for IPF are 25 gms of Steroids and antibiotics. Cannot go on a couple of really good drug trials as have survived more then 4 to 5 years. I would have thought that some drug companies would want to test those who make it pass 5 years but no. Ah well
Steve
Ps Edit as needed :)
Charlene Marshall
Hi Steve,
Thanks so much for reading my columns and reaching out via the comments! I spent some time in South Australia (Adelaide) a few years back, before I was diagnosed, and I loved it. Beautiful part of the world you live in :)
Thanks so much for sharing your additional tips re: oxygen and preparing for power outages. I know they will help others, and all areas are different and the more prepared we can be, the better. Thanks for taking the time to write to us! Hang in there and keep in touch.
Charlene.
Dev
Hi everyone, spouse near end stage IPF is on two 10 L/minute home oxygen concentrators. Also have 2 portable concentrators that are pulse and do not deliver as high a dose as the home units. Also have a few tanks. Recently bought portable generator that runs on gas and propane. You need an “inverter” generator to run electronics such as oxygen machines. Suggest you buy generator with electronic starter as i cannot pull cord to start it and have to call neighbor. I put generator on a wagon type cart and have three filled 20 gallon propane tanks at the ready plus 3 heavy duty extension cords of different lengths. Bought/installed plastic generator cover that is a small fitting tent required for using generator in rain or snow. Plan the location to set up generator where exaust wont catch veg on fire, at least 15 ft away from house to prevent gas or propane fumes from entering your home, is level and cords can be inserted into a window with screen removed. Cut a pool noodle to fill crack of open window so cold air, or rodents dont come in. Ive also heard of removing door knob and inserting extention cords through it. How to proceed: Power goes out, caregiver helps patient put on portable or bottled oxygen right away, situate them in an out of way spot not affected by generator cords or moving oxygen machines around. Keep them calm and check on them often. Caregiver cranks up generator, connects home oxygen machine(s) then connects cannula to patient. Check to make sure no kinks are in oxygen tubing after moving machines/patient around and check level of oxygen setting on machine(s) is level needed. I found once i moved machines to another room to reach generator extension cords, the machines changed oxygen levels on their own. 2 days later oxygen level on machines continues to jump around some, so check every few hrs. Always begin with full tank of propane if possible so you dont have to put patient back on portable machines to change propane tank. Have battery emergency lights by patient at all times in case power goes out at night. They will need it to quickly to get their portable on in the dark. Keep a headlamp for you to run the generator in dark if necessary. Sleep in your clothes and boots if you think power may go out so you can run into action to set up generator. Enlist and train neighbors to help during outages. Our home generators were used to operating on tile floor with open windows above. Heavy rains caused a pool of water i could not get wagon across so i had to set generator up at alternate location. Extension Cords were not long enough so had to move home oxygen concentrators to bedroom on rugs and was hotter in there. One generator malfunctioned after several hours. Equipment malfunction especially in the dark can be very dangerous to your patient. Using a portable generator sounds and is complicated but can be life saving. Practice and write out step by step instructions and run through it a few times. Set up generator in place ahead of time when conditions predict power outages. Our set up was approx $2000 for 4500 watt inverter generator, cords, tanks, wagon, tarp, oil and supplies and big wheelable bin to keep supplies in. Also, like others said, keep car full of gas to charge portable oxygen machines in the cigarette lighter or other outlet. You can also call 911 for fire engines to bring oxygen but know they may be responding to incidents caused by power outage so dont rely on them. I am 70 years old, never operated a machine in my life. You can do this. Best to you all.