Today I spent all day at the hospital and nothing happened. We have no idea why I need oxygen and as a result I can't get portable O2 to take with me places, thus rendering me house-bound.
On Saturday we went to the Urgent Care center and the 3 minute walk with the doc brought my O2% down to 88 showing that on exertion I should be using oxygen. I spent all day Sunday on oxygen and felt much better! Saturday we ruled out mono as a possibility. We were pretty sure that it was just the natural progression of my disease. I was willing to accept that and move forward with my life.
Today at pulmonary clinic, they had no clue why I would need oxygen either at night or during the day. My blood gas was NOT normal - my PO2 was 72 - that's not a good number. And for some reason they won't admit that there's something wrong with that. OR the fact that my pulse goes up to 130 when I walk. They won't acknowledge that issue either. They had me do an emergency CT Scan because they said it was possible I had thrown a PE - pulmonary embolism. That was one of the scariest things a doctor has told me.
My CT scan was clear - no PE - which is GREAT. But the fact that they won't prescribe O2 during the day for me when I clearly need it is not great. This means I am stuck in my home because I get headaches and confused when I walk too much.
In about two weeks (hopefully sooner!) I will have two more tests... a cardio echo gram to make sure my heart is working correctly. Needing oxygen could be a sign of congestive heart failure, which is something I really need, right guys? The other thing I will do is an exercise test in the PFT lab to see how much exercise I can handle - which is currently not much. We all know how much I love to exercise, so that too will be a really fun test. I would rather have another CT scan with IV contrast, I think.
I hope with all my heart that my heart is okay (hehe, I amused myself with my own pun...). But seriously, I have so many lung problems, I don't need something to be wrong with my heart!
This is obnoxious. I have too many things to do and too many places to go to put up with this kind of bull. I just want to be better or have portable O2... I want to get on with my life!
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