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miocean

Oxygen

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Well I had a PFT test done last month that showed my levels had declined so I had a CAT scan done (no change from last one) and did a 6 minute walk test. It turned out to be a 4.5 minute test as it was stopped because my saturation dropped to 85. So I have to go on oxygen when I exert myself. I have Interstitial Lung Disease.

 

When I was first diagnosed with sclero I was on O2 24/7 for four months. Then I guess my levels improved to where I didn't need it. Now, four years later, I'm back on it as of today. I have a portable tank of liquid O2 that I fill up from a big tank but it is heavy and bulky. They are coming out tomorrow to evaluate me for a smaller tank. It is called a Helios and I had one the last time.

 

I am supposed to use it when I go to the gym but I know I will feel foolish carrying it around with me. For those of you on O2, how to you manage situations? Do you have any suggestions for me on how to deal with the equipment? Anything would be helpful. Thanks a lot and I hope you are all doing well.

 

miocean


ISN Artist

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Hello Mi,

 

I'm sorry to hear you need to go back on 02. How discouraging. I've never had to use it, but I can relate to how you feel about using it in public, as I'm embarrassed to use my handicap placard for parking.

 

I know one of my dearest friends on here is on oxygen and she's one of the classiest ladies I know, I hope she can give you some encouragement....


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Mi,

 

I'm pretty much in the same boat as you are.

 

I use the micro-tubing (less noticeable) and put my HeLIOS in the main compartment of one of those "better back" tear-drop shaped shoulder bags, if you know the ones I mean. I leave the zipper open enough for it to breathe. It's comfortable to carry, less noticeable, and the insulation from my bag keeps the cold from the device from chilling me.

 

I've been considering those glasses with the O2 piped through the frame if/when I need it 24/7. For now I'm just getting fancy with scarves and things to disguise most of the tubing. A friend suggested I bead the tubing (tubular peyote stitch maybe?) and pretend it is a necklace.

 

Jeannie

 

Jeannie McClelland

ISN Assistant News Guide

International Scleroderma Network(ISN)


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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miocean,

I am sorry that you are having to go back on oxygen. I know how frustrating that is. I also can relate to how cumbersome the tank can be. I use compressed O2 and have a couple of small bottles that I refill from my in-home compressor unit. One of the bottles fits into a small backpack purse that my hubby found on the internet. I can throw the pack on my back while I'm on the treadmill or set it on the floor. When I walk around the neighborhood, I just throw it on my back. I love it because it's not slipping off my shoulders and my hands are totally free. On continuous 2L it last an hour. On pulsed I can go more 3 hours. The backpack also has room for my wallet, keys and sunglasses. I love it! Others with O2 are always asking "Where did you get that?" I tuck the hose up under my shirt and head out.

 

I hope you find something that works for you. Glad to see you're still going to the gym in spite of it all!!!! Hooray for you!

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Miocean,

 

I'm sorry you need to go back on oxygen again. My husband, Gene, who is ISN Vice President, is on oxygen 24/7. He worked full-time as a courier driver for the first 18 months he was on oxygen, so within a day or two he was pretty well over any bashfulness about the new equipment.

 

I sew special oxygen covers for his portable tank, adding pockets for billfold, inhalers, etc. to match his wardrobe. We usually decorate them with an applique (like dogs) to help make it more "fun" and approachable. He works part-time as a restaurant greeter now, and sets a great example for "normalizing" oxygen use in public. He has very gently convinced more than one lung patient into wearing their oxygen as prescribed...largely by his own good example.

 

He also wears the Oxy-view glasses and is even in TV commercials for them, for his local medical provider. He attends two lung support groups every month -- because they are so much fun, such a great batch of people who set wonderful examples of "living with oxygen" rather than suffering with oxygen. See our page on Oxygen for more information!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Guest delk

Hi

 

I need to carry around o2 when I walk---I think I have tanks of compressed gas (I'm not even sure), but they're quite small and I carry it around in it's back-pack. Most adults ignore it or ask questions relatively empathetically. Children stare (and with a 5 year old I'm around children alot). I just tell them I need some help breathing and they're fine with it.

 

Good luck,

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Hi Dear.

 

I went through the same thing you are going through. I started out on oxygen 24/7 and then it was just when I exerted myself and while sleeping. I've since moved to a lower altitude and don't work out at the gym anymore, so the little exercise I get doesn't require supplemental oxygen. I used to take my Helios to the gym and it was really awkward. I was embarrassed but eventually saw it as a symbol of strength and courage. A lot of people would not be caught at the gym with an oxygen tank, so you go girl! Some people wouldn't even be caught at a gym, period.

 

When I did the eliptical or treadmill, I would sit the Helios on the machine and hope I didn't trip. When I did weights, I used the little pack that fits around your waist.

 

When it comes to canulas, there's really no way to hide them. I've tried it all. I found the micro canulas fit in my nostrils better than the larger ones. If you have a small face or small nose, ask for the pediatric or micro canulas. There are so many different brands and the range of comfort level is broad.

 

I got so used to using oxygen that after about 6 months I really didn't care anymore. I even got used to it at the gym. No one ever asked me what my deal was, not even the 20 personal trainers that worked at the gym!

 

Good luck and hang in there. Maybe this is just a fluke? xo,

Clem

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Dear miocean,

 

So sorry you are back on o2. Hopefully it will settle down again for you. Don't have any suggestions for covering all the equipment but I see quite a few people shopping with their backpacks and small portable tanks. Take care.

 

With gentle thoughts,

 

Judy


A happy heart is good medicine.

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I had my evaluation with the oxygen company today and they did qualify me for the smaller Helios unit. Bad news is she told me I need to be on it 24/7 and not just when I exert myself. It will take some getting used to. I am wondering how I am going to go to the beach in the summer and how to travel and go places with it. Any advice or info would be appreciated.

 

miocean


ISN Artist

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