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My Test Results

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I got the results from my pulse oximeter sleep study last night and my night time saturation averaged 92! That is really good. For those of you that didn't read my earlier posts, it dropped to 84 when walking without o2.

 

I am happy about the results. I see my rheumatologist tomorrow for the PFTs. I was a little worried that because my levels were so good that my insurance would not cover my liquid oxygen (for when I leave the house to exercise,etc). I hope not, after all, the liquid is what I need the most apparently.

 

Jennifer :)

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Hi Jen,

 

Thanks for letting us know. That is good news. Please let us know how your appointment goes and if you get the prescription for the O2 that you need.

 

Warm wishes,

Heidi

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Jennifer, thanks for letting us know whats going on. Did you sleep the entire night with the oxygen on? Is that why your level was around 92. Isn't the magic number suppose to be above 94 even while you are sleeping?

Are you getting the results of your PFT's tomorrow or going for the test? Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hey Jen,

That's great! So I wonder if you'll still need to use O2 at night.

 

You mention that you use liquid oxygen when you go out. How heavy is the tank and how long does it last? How big is the tank? I ask because I carry a little 3 pound compressed O2 tank but I have to use it sparingly because it only last about 3 hours of continuous use. It was a real struggle getting that. My PT was the one that contacted the supply company and said "she needs it!" The original tank was big, bulky and heavy. I'd like to hear more about the liquid O2.

 

Thanks,

Janey


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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Thanks everyone....It is just comforting to know that I can breath on my own, so to speak, at night and not have to use oxygen...especially when I travel. I'll go over it with my Dr. tomorrow though. I have always been told to sleep on it from the beginning. I already got the RX filled for the oxygen so yes, I did get it!

 

Sheryl, I got up four times last night, but apparently it did not matter! I have my PFTs tomorrow morning then meet with the rheumatolgist in the afternoon and we go over the CT scan and pfts....yay. I hope I have stability. My Dr. keeps a chart of all aspects of the pfts from day one, so it's really easy to see how I'm doing.

 

Janey, I love liquid oxygen. I have a 41 inch cylinder of liquid oxygen in my garage that gets refilled every two weeks by the oxygen company. I have a Helios, which is a brand of portable liquid oxygen units, that I fill from the 41 inch tank. The portable is very small. I think it's probably a lot like the one you use as far as size. I have a sling strap and a hip pack to carry it in. I use it on a 2 liter flow and it will last about 6 hours. You can have a look at it by googling "Helios oxygen". I don't know what other forms of oxygen cost, but I've heard the liquid is much more expensive so you definitely want insurance to cover it. ONe more thing, the Helios releases oxygen only when you breathe, so it conserves the oxygen in the Helios and lasts even longer.

If you can think of any more questions just let me now. Maybe you'll see someone tomorrow with a liquid oxygen unit when you are at the Dr. and you can see it in person.

 

Thanks,

Jennifer

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