Quote:
Originally Posted by Maxwell'sMom
Hi, You've gotten some good advice, and I can't add too much, except, I'm an MG'er on Oxygen, not twenty four seven, but during exercise, and sleep, and right now, cause I went shopping with my Mom, and walked too much. (I'm 45)
MG has weakened my lung muscles.
Also, I need to ask you if they have done an echo cardiogram on you to check your pulmonary pressures. This is extremely important, I can't stress this enough. Pulmonary Hypertension should be ruled out, and right away. Please ask them to check.
Please let me know what they say.
Oh, and please please don't be afraid to ask for this test. This is your body, and your life, and your health. I'm so worried about you.
Oh, and welcome...
Love Lizzie
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Hi Lizzie,
Yes that is the first thing they checked by doing a heart catherization and everything was fine including my arteries.
The reason I am on oxygen 24/7 is because my saturation levels drop rapidly with any movement. Technically I should only be on oxygen once I stand up, but since my sats drop so quickly my doctor wants them to be 100% or 99% at all times. They have told me that if it is too much while I am at rest I can reduce the flow or take it off.
Thanks for the advice though. It is nice to hear about other people going through my same problems since it is soooo rare.
Steph