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."
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.
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.
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!
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.
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.
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.