What’s everyone’s oxygen flow rate and equipment type?

[Brittany Foster]

Hi @stephanie I use my oxygen with activity right now. Sometimes, when I am sick or not feeling well I use it more frequently during the day. My oxygen drops pretty quickly into the low to mid 80s with just minimal activity. I have had to increase my rate with the POC and I also have this type of Inogen that you have. For me, the pulse flow doesn’t work as well and my PH doctor has said before that sometimes it doesn’t always work well for PH patients with the POC, especially when their respiratory effort is decreased or if they aren’t breathing as much with just normal ventilation. It is sensed to pulse based on a breath so if you’re only taking small breaths or have a limited lung capacity it may not work as well for you to increase your levels . This is what I have been told personally but I am sure it is a case by case basis. When I use the tanks I have a home filler system and have 4 tanks that I switch off and on the filler to always have one ready. I take it in a backpack that is a narrow Camelback brand that hikers use. The only thing with these backpacks are sometimes they come with the water in them and on the strap is a magnet. I had to remove the magnet because of my pacemaker and it was easily cut out of the strap without ruining the backpack. I find this brand backpack to be durable and a good fit for the oxygen.

[Stephanie Mitchell]

Hi Brittany, like I was telling Jen, I think I’m going to need to switch to tanks for when I go out of the house. My POC is running at max now and it barely puts out enough oxygen with me at rest. Thanks for you information about the backpack. It sounds great, but I have a bad lower back L5/S1 stenosis, and don’t think I can carry a backpack. So I’ll probably have to use a pull cart for the tank. Have you used one before and if so, how ungainly is it out in public?

[Brittany Foster]

@stephanie the only time that I would pull my tank it wasn’t too bad out in public. With shopping with it, I would just stick it in a carriage and just push it along with my shopping items. I would also decorate mine when I had to wheel it and everyone loved it that saw it. I tried to make wearing the oxygen and lugging the tank behind me as “fun” and creative as possible! I dressed it up for the holidays and for special events like weddings and parties ! I loved doing it. I made slip covers for them out of old leggings that didn’t fit me anymore and then hot glued flowers and designs to it and then it would slip right over with the legging material!

[Alfred Gronroos]

@stephanie I am on oxygen 24/7. I use a concentrator at home with a 25′ hose. It works but is not always pleasant cuz it will get stuck frequently. I have learned pretty much how to walk with it and not pull too hard on my nostrils. When I am out and about I use the small tanks and a back pack with a regulator that goes to 8 but on 5 it goes empty fast, very fast. I have another regulator that goes to pulse to 5 and 4 on regular. I try to pace myself slower which is hard and really ticks off my wife. But better for me. I do put my pack in a grocery cart when shopping before this virus. The canula can get short but we learn by doing. At least I was not vain when I was informed to use oxygen. Things could be much worse in my life. I like Brittany’s idea of decorating the cylinders. I think a skelton, witch or scare crow. And I have a cart with a 25′ hose I roll around outside with the tall tanks plus a cart in back seat of vehicle with a tall tank plus spare tanks. I seem to have a problem remembering to shut off the tank when I switch to other ones. Guess it keeps the oxygen company in business. and I am on 4 lpm and 4-6 when active. Al G.