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Mom had a pulmonary function test recently. That went fine, the pulmonologist was actually surprised her results were I guess better than he expected.
She had the 6 minute walk test today however and needed supplemental oxygen throughout. The therapist said 2 liters got her back to recovery quickly. She said she would likely get an oxygen concentrator vs tanks. And that it would be pulse rather than continuous.
We will be seeing the pulmonologist again and go over all of this. In the meantime, what questions should we be asking to prepare. Anything that we should definitely do or don't (other than smoking or flames!)
I'm reading portable ones aren't generally covered. I'm assuming the DME folks will educate us.
Thanks for any tips as we embark on this newest "adventure."

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Plug the concentrator unit in, put the cannula on moms nose, and that's that. Ask for the cannulas that have foam cushioning on them so you can adjust it over moms ears. They get sore after awhile. I bought my own concentrator because my copay was $21 a month. I only need my oxygen while sleeping.

I don't think Medicare covers portable oxygen. The tanks are very heavy and unsuitable for travel, imo. You can buy portable oxygen units in a backpack or tote bag, but know they are quite expensive. Look on Facebook Marketplace for used units, or Craigslist.

I can't think of specific questions to ask the doctor bc oxygen use is pretty cut and dry. Oh, don't use Vaseline or petroleum jelly on moms face bc it can be combustible.

Good luck to you.
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Reply to lealonnie1
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The only thing I will add is that even with an oxygen concentrator you will still need several oxygen tanks as back up in case you were to lose power. But if you have a generator you won't need the back-up tanks.
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Reply to funkygrandma59
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My dad has COPD and getting on oxygen was a godsend for his quality of life and mental wellbeing as much as physical. I really hope your mom has the same experience!

As for the practical stuff, the tubing took some getting used to for him as yes, it can get tangled in chair legs, etc. The tubing should be replaced regularly (once a week or two) which keeps the oxygen flowing better but also, it's a little stiffer when it's new and slightly less tangle-able.

It depends what she's been prescribed, but my dad's on oxygen 24/7 so he showers with his on, yes. It makes showering slightly easier for him (though still exhausting).

I agree with lealonnie1, the portable oxygen is expensive but helpful too for getting out and about. We bought my dad's one on Facebook Marketplace for half the original price in like-new condition. Definitely worth it to increase his feelings of independence and adjust to the feeling of being "leashed" as he calls it.

In terms of safety, I also recommend having a clear plan in place for power outages - making sure that extra tanks are readily accessible and full, etc. And going over an emergency plan for if there is a fire in the house.

Very happy to answer any other questions if you have any!
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Reply to kitchenwitch
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I would suggest having a list of questions for the DME provider, as their tendency might be to drop things off and leave. Tell them you are new to using oxygen and make sure you understand how to switch from the concentrator to a tank and how to change the regulator(control on top of tank). There are different sizes of tanks, which can make it easier when you go out. Because she won’t be on continuous oxygen, the tanks will last longer. Make sure they leave you plenty of additional tubing, cannulas(nose pieces), etc.

It’s easier to manage the tubing if you don’t have a walker, but people learn how to do it. You should also avoid using an electric razor, electric toothbrush, hairdryer with oxygen on. If your mom gets too short of breath in these situations, it helps to sit and dry your hair, etc.

If you don’t have one, I would recommend getting a pulse oximeter to monitor her oxygen levels. Good luck, and hope this helps her feel better.
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Reply to MidwestOT
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I am a respiratory therapist. Insurance only covers a concentrater, replacement nasal cannula every few months and a couple of small tanks each month that each last a couple of hours. That is enough for doctor visits but not enough to go on leisurely excursions. If she goes out for the holidays, you have to pack the yieldy concentrator with you. She cannot lift it herself.
The machine has some noise that can be reduced by using hoses ( tested at up to 100 feet). The drawback is the trip and fall factor. Hoses rarely need replacing. Oxygen will flow even if the hoses are kinked. Usually the concentrator comes with a bubbler humidifier that has a pop off whistle if the oxygen flow is overly kinked. Do not use the bubbler on a tank.

Insurance does not cover more because of a federal law in 2012 with competitive bidding. Suppliers are struggling with reimbursement. Liquid oxygen canisters were used up till 10 years ago then Insurance no longer covered it and no supply company is making it. The SOAR act is in Congress, to be voted on soon. You can contact your state lawmakers asking to support this act in an effort to increase funding for more portable oxygen.

If mom finds that her quality of life is diminished because she cannot get out of the house. There are portable concentrators that cost up to $5000 that she can purchase. They are not regulated by the FDA and oxygen concentration can vary. It is best to purchase from the medical oygen supplier who knows the brands rather than playing Russian Roulette online. If she gets one, she should test her saturation levels just like she got tested in the office at rest and with 6 minutes of walking

Someone mentioned about loss of power. 2 tanks should hold out up to 4 to 5 hours. For disasters, her option is to contact her local police on a non emergency line to find local shelters with electricity. If a disaster is imminent, she needs to evacuate or seek those shelters before a storm, or if she is in an area with natural gas, she installs a generator. Another option is to go to a hospital. I have seen medical admits post hurricane just for the oxggen.
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Reply to MACinCT
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casole Dec 21, 2024
Wowwww, this is a whole education. I had no idea about the SOAR act and will write to my legislators now.


She doesn't go on trips or anything but enjoys outings to Ocean State Job Lots and the occasional drive to get out. I know she'd like to walk more but hadn't due to being so breathless, but now it seems it will be ultra expensive to get something portable. Wtf.... Let's just relegate a whole bunch of people to bring shut ins....??


Should she also work with a respiratory therapist regularly also do you think? We will have a follow up soon with the pulmonologist and will ask him as well. Hoping he can order home visits.


Thank you to everyone who responded.
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Since she is breathless with walking, she can ask the pulmonologist about pulmonary rehab. It is about 2 hours weekly up to 8 weeks or so. Insurance covers because it is well studied not only by boositing quality of life but also reduces frequency of hospitalization. RTs and PTs will educate, put her on a slow walk treadmill or bicycle with full moniters. For the first 30 minutes they exercise her to build strength so that her shortness of breath becomes manageable. Classes are usually at one of the larger hospitals and they hook her up to their wall oxygen.
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Thank you. I am wondering how much of an adjustment it is for folks in getting around the house with the tubing etc, do they shower with it etc? I worry about her getting tangled in it or tripping over it. Does anyone have any suggestions or recommendations for that part?


We still need to see the pulmonologist for follow up as he has to write the order/prescription and I hope there will be education during set up and that it isn't just dropped off at the door.


Of course her test was Thursday evening and it's Christmas week and this guy spends a lot of time doing hospital rounds. The desk person sent him an email and messaged him today to get her seen as soon as possible.


She's understandably very anxious and rather depressed about it all. As am I. Which is too bad because her anxiety was getting better with counseling and meds. She just can't catch a break. Though I pray the oxygen gives her some relief from the shortness of breath.


Sigh.
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