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Are you on supplemental oxygen and worry about your car breaking down?
Do you worry about your car breaking down, becoming stranded, and running out of supplemental oxygen?
Forum member @Debbie Bell recently expressed this concern. She is on 6 liters per hour and worries about this “what if,” especially when driving alone.
Have you ever found yourself in this situation, and what tips can you offer Debbie?
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28 Replies
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What an important question! Although we may not think of this scenario, we should carry our O2 with us. Like @Debbie Bell, driving alone would be most worrisome. But you know, I never think of this. Funny, I always carry extra meds, but not always my extra battery for my portable oxygen concentrator(POC). Because I had my car charger with me, I thought I was ready.
Thanks for posting this topic as a reminder for me and others that we need to carry backup batteries or oxygen tanks, I usually don’t drive too far from home, but the “what if” will be ingrained in my brain when I leave alone.
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I agree, I thought this was an excellent question that @Debbie Bell asked.
Cullen wasn’t eligible for a portable concentrator due to his age so we lugged around the cylinders all the time. I always kept an extra in the car or more if we were going to be more than a few hours from home. But I don’t know that we were always well prepared for a long delay.
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I am embarrassed to say that I haven’t thought of this and my car is 25 years old! I’ve been on supplemental oxygen for 5 years. I have a portable concentrator and have an adapter for the car, so I can run it off the car. However, if I end up being stuck somewhere (like a mechanic’s shop) for a while, I would eventually need to plug into their electrical source. I guess I better start bring my home charger along with me. Thanks for bring this up!
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@Joan Strosin I think many of us haven’t given a lot of thought to this scenario until now. I appreciate that @Debbie Bell asked the question!
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Hi, @Joan Strosin; please don’t be embarrassed; you are not alone. And I worked in nursing before my PH diagnosis 19 years ago. This had not been something I thought too much about carrying my POC and an extra battery. But the battery charger won’t charge with my car off, so I’m thinking about it now.
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I don’t use oxygen, but have some ideas to help you out. Google “portable jump starters”. They are a portable battery that you can use to jump start your car. Everyone should keep one in their trunk and learn how to use it. You never know when the battery on your car might die. The better ones have a 12V socket and 110V plug in. You could use that for your oxygen. It could get you out of a tough spot.
The other thing to consider is power outages at your home. The hurricanes in Florida are an example of that. The power could be out for days. We have a generator and keep a large amount of fuel to run it. I assume some live in an apartment where it would be impossible to have a generator. Google “portable solar power stations”. They can be used indoors and kept charged in a regular outlet. You can buy solar panels to keep them charged during an extended power outage.
Your going to have to do some math to figure out what to buy for both a jump box and solar generator. Have to know how much power your devices use and how long you need your battery to last. To do that google “amp hour calculator”.
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Hi @Roger Bliss, what incredible tips you shared. Manny does have a portable battery charger. However, it’s either in his truck or the garage if he needs to jump-start his bike. Speaking of bikes, didn’t you mention you had one and would love to get back on it? Have you tried riding yet?
Coming from the Texas Gulf Coast, we have a portable generator. It was always handy when the power was out during hurricanes, tornados, etc. We do live in a condo, but downstairs in the corner, and we’ve already told them that if the power goes out, we will be using our generator as needed.
The tip of using the amp calaulator is a terrific resource. I usually ask Manny, and he knows. But many don’t have others like that to take care of that for them.
Thanks for such informative suggestions; I know many others will benefit from reading, too.
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Looks like you are already set up for power. Hopefully, others can get set up too.
Haven’t got my bikes ready to go yet…..been busy doing other stuff. Hopefully, I can get my Harley to the shop next week. It’s been sitting for 3 years and I want them to service and go over it before I take off.
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Hi @Roger Bliss, I think I am somewhat set up, or Manny has us prepared. Hehe.
I don’t blame you for wanting Harley to go through your bike before you hop on it and ride. In three years, it’s probably itching to go, too. This Saturday, Manny did a Veterans Tribute ride over 60 miles and hundreds of bikes. I didn’t go because I only ride with him on short rides and wasn’t feeling up to that long ride. He needs his free time, too.
I’ll look forward to hearing more about your first Harley ride soon!
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Thank you so much @Roger Bliss for offering a great deal of helpful tips regarding both auto and home preparedness when on oxygen. I appreciate how you even told us where to go to get help with the math required to figure out what will be best for individual situations. Great information!
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Just a quick note of what works for me. I what’s have a checklist on my back door with what I need in preparation for driving alone. This always includes a back up small tank in case the portable concentrator has an issue. It eases my mind and I know I’m prepared.
And thank you to all of the contributors; great ideas all around.
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@Col a check-list on your door is such a great idea! When you have PH you have more to worry about than your keys, wallet, and phone so that is smart of you! Has doing that ever saved you big time?
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I carry all my extra batteries for my portable. Everything gets toted in the “chicken bag”. If I refer to the chicken bag, my family and friends know exactly what I’m talking about and can grab it for me! If I’m going some place for quite some time I bring my outlet charger as well. So while I’m sitting I can plug in and charge while on it. Now, that I’m on 8 liters, I carry cylinders to use while driving. My doctor is two hours away and this gives me “good” air for some of the trip. My car chargers are not working. I’ve bought new ones and they won’t work on either of my machines. Is there some kind of fuse in you car for your cigarette lighter? I travel a lot and have had a portable quit working. Scary feeling. When traveling outside of town, I take my second portable as well.
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@Debbie Moore you sound very prepared! I chuckled at the chicken bag reference! I ALWAYS kept an emergency overnight bag in our car so if I had to take my son to the hospital I didn’t have to worry about throwing that together and risk forgetting something. Never thought about giving it a name and now I wish I did!
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Hey, @Debbie Moore, I love the name of your go-to “chicken” bag. I need to fill mine again and get it ready.
So, my Inogen POC has a car charger, but I have to plug it into a plug-in between my back seat. I know some vehicles need an adapter plug, but I’ll ask my hubby. He did that in his truck. Stay tuned.
How are you doing this week? 💜
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Good Morning Colleen! I just wanted to say thank you again for all of your support and your genuine kindness and understanding.
I think we may be related in some manner; I agree that you could be my sister in how we look!
My relatives came from county Cork in Northern Ireland. They came in through NY and settled in Philadelphia.
Please, I would love to hear more about your lineage; wouldn’t that be wild if we are somehow related! I would love it?
Quick question. Do you live near OCNJ? My Mom and I are going for a few days in late September and if you are close; I would love to meet.
Wishing you a beautiful day ahead with joy and blessings. You are truly a huge part of the Pfight and have given so much! 🌼🏵🌸🌞🫂💖
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@Col I live just 40 minutes from OC! That would be wonderful if we get to meet!
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And Debbie, when I read about your ” chicken bag”, I literally laughed. I absolutely love this and what a fantastic idea! I appreciate you sharing this; this forum has become such an important piece to me and all of you are so special, and delightful. I’m so thankful and grateful for each of you!🫂🌞🌸🏵💙
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Always. Was in a rental car about6 months ago. The car was new. We were out in the country and my oxygen went dead. I had backup in the back but we were on a narrow road with not shoulders and could not easily get to it so I drove faster and faster to get where I could pull over. By then my HR was about 140 and my eyes were not focusing well. Reason: the cigarette lighter plug was not working at all so my oxygen had gone completely dead……So be careful in other vehicles and check the power before leaving……
Also, I am now on 7 liters so my Inogens no longer work for me so I bought a new product and it beats Inogen all to pieces. It is a Liberty Oxy and it goes to 10 liters on pulse dose and 2 on continuous. It is small and portable and on 7, the batteries last longer than Inogen did on 6 liters. It is also capable of producing more so there is security in knowing it is available if I need to go up. It is a little higher but it goes on sale at about the same price as Inogen. But the external charger and the extra batteries are MUCH cheaper and smaller and easier to change out. It also is vented better and does not overheat like my Inogens did. So glad I have it. Just an FYI.
And yes, I always pack extra and then some. Even a nice restaurant that I go to sometimes always seats me by a plug just in case. I never asked for that but when they saw my oxygen, the manager told the hostess to always seat me by the plug just in case.
It has been a long year….
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Hi, @Jill Upshaw. I haven’t heard of the Liberty Oxy! I will have to research it because my Inogen is old, and they are discontinuing its accessories. I’m hoping it keeps going as long as I need it. We just had to purchase a new home concentrator and waiting to be reimbursed.
Thanks for sharing that info. It’s scarier when alone. Yeah, my Jeep is older, and we have been talking about a new lease to give me more sanity when I am driving alone, although I am not making long trips. Dependability is critical and something we all need to think about.
I’m dragging my feet because my Jeep has been paid off for two years, so a new payment is crazy high for me. 😉
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Jen, It is the Liberty 2 and it makes my Inogens function like junk. I am on 7 right now so it goes to 10. Don’t want to get there though. Hope you are doing well.
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Wow, I am going to look into it. I think I’ll have to replace my Inogen within a year!
Thanks for the information, @Jill Upshaw. How are you doing?
I am preparing or procrastinating to pack for the PHA conference on Thursday-Sunday.
💜🤗
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@Jill Upshaw what a scary, horrible experience that must have been! Did you make the rental agency aware of the problem? The importance of that cigarette lighter might not be obvious to them.
I love the restaurant story! I wonder if the manage has some personal experience that made them be so accommodating?
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Also, when driving alone , I line up my backup oxygen in the front seat so I can easily switch over if needed.
As far as car trouble, I lease every two years. I try to always have a good running vehicle with all the safety systems in place and an SOS button just in case. I also set up my basic records up with the roadside service so hopefully if I get in an emergency , nobody will hang any nitro on me – I am on Adempas. Also, let them know I bleed large amounts easily…..I also keep updated emergency records on my phone in case I as alone…..All in all, I just keep moving the best I can……
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Yes. I’m on 3L at rest (6-8L with activity). I can sit in a car with pulse but my sats hover around 90 so I’m not comfortable driving with a poc. I always have tanks in my car since I need them for walking – or if I’m driving.
I actually am more worried about being stuck in an elevator. I live in a CCRC with lots of elevators. Periodically one goes out. I don’t usually have much O2 left after an activity …
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Hi @Zoe, I am not a massive fan of elevators, especially if they are smaller or crowded. It’s like my anxiety goes up until I know we are stopped, and the door opens. So you are not alone in that, my PHriend.
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