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07/28/2008 06:09
Margie
Posts: 8
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 Hello everyone! My name is Margie, and I was just diagnosed with PAH 5 months ago. My major problem at this time is a very low oxygen sat level. I am on oxygen 24/7 but if I get up and move around, I drop immediately to 80. My doctor said I can travel,and we want to go to Europe, but I know nothing about portable/transportable oxygen concentrators. If any of you have used them or know anything about them, I would appreciate some info. The one I am looking at on the internet is the Inogen One, but a charge that lasts only 3 hours isn't going to do me any good.

Is this low oxygen level when moving just a part of this awful disease? Does it get better over time? I am on Revatio, 60 mg daily and tomorrow, 7/29, I will be starting a new medication, Ambrisentan. If any of you are taking it, I would appreciate hearing how you are doing on it. All info states it is very toxic to the liver and patient must be monitored monthly via blood test to see how liver is reacting, plus a multitude of other annoying side effects.

I look forward to hearing from my fellow patients.

Margie
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