No Clue With the O2

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!

Comments

Anonymous said…
Hi Tricia,
I'm from Fayetteville, NC. I go to UNC CF center. Duke has a great lung transplant center (they have a doctor who does double double lung transplants) but I have heard many complaints about their actual CF clinic. UNC tends to get a lot of Duke's CF clinic patients. But, it's a great center for lung transplants in CF. I've been reading your Husband's blog, as well as yours. Wow! How is your daughter doing? Do you have AIM? You can email me at Meranda22@aim.com and that's my AIM SN as well. Looking forward to hearing from you!
Meranda
January 29, 2008 at 8:12 AM
Meredith said…
Don't lose FAITH! God will provide and stay STRONG! I am thinking of you and praying for you without ceasing. I know you will come out on top, just hang in there! Meredith/Orlando FL
January 29, 2008 at 5:01 PM
Anonymous said…
it's amazing they're jerking you around so much to get portable oxygen. I never had that kind of problem. They actually told me i should be on it when i didn't really even think of it. I would think that with CF they would realize that shortness of breath with deteriorating lung functions and desaturation like that they'd see the need for oxygen. However maybe it is something that your insurance requires them to check before they'll give you oxygen, but you'd think they would have told you that. I've had a few 6 minute walk tests and i desaturated to about 85 pretty quickly. Maybe its time to look into a different cf center if they can't even get you oxygen.
January 29, 2008 at 10:30 PM
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