Anybody have low DLCO scores on their PFTs?

[Guest KiminOrlando]

I saw my cardiologist today in South Carolina that treats dysautonomia. My foot surgery just got cancelled because my PFT was a surprise. I thought I was out of breath because of tachycardia. Turns out there is a problem with my pulmonary diffusing capacity. Cardio was unhappy Florida Pulmonologist had okayed surgery.

Oh, and he took me off of Northera. They do NOT think Northera had anything to do with it.

He went in and pulled all of my records from the beginning, Mayo and Vandy, and said he needs to look at everything and do some research. He drew blood, checking norepinephrine, cortisol, and I don't know what else. Seemed like a lot of blood. He saw my 8 am cortisol from 3 weeks ago (outside lab brought with me) was at 5 and did not like that at all. I told him I can't handle mornings, that I am not functional, and after I drug myself to that 8 am test (up at 6:30), I had to go home and sleep for 5 hours because I was weak and shaky. I think he really heard me this time.

I meet with a Neurologist tomorrow. Hoping for answers about dizziness (not enough O2 to my brain?) and to dicuss my Chiari.

This trip is already more than I bargained for, but I am grateful for good physicians who care about me, are knowledgeable about dysautonomia and that I have access to them.

Anybody with a similar experience regarding pulmonary issues, I would love some insight. Or any other insight.

Thanks.

Kim