![nocturnal hypoxemia nocturnal hypoxemia](https://image.slidesharecdn.com/pediatricnursingreview2-130822003333-phpapp02-150423211038-conversion-gate01-150427181255-conversion-gate01/95/pediatric-nursing-review-2-43-638.jpg)
“That is really invasive testing.” Umm… I think I do, I would reply. I began to ask for a right heart catherization procedure to directly measure the pressure in the right side of my heart. I struggled on as my face became more blue, my red blood cell count higher, my panting for air more common, and the occasional near-fainting event left me collapsed on the floor. I worried that my doctors had just parked me in a holding pattern as I slowly got worse it is hard to advocate for yourself when you are sick and dependent on your doctors for help, even if you think that they are dismissive and borderline disparaging. It was, in my mind, a huge complicated mess as my doctors applied best practice (and rigid) diagnostic parameters to my symptoms or zeroed in on specific complications of my scleroderma and ignored other possible (and to be fair, rare) causes for my symptoms. If doctors didn’t tend to apply most-common-cause thinking to my condition they might get to the bottom of things faster. If I didn’t have a rare disease confusing the issue I would be getting better health care, it seemed. I began to think of myself as the Blue-Lipped Zebra (BLZ). Hey, I had a blue face and panted for air when I climbed stairs vacuuming could put me on the floor. I struggled on, battling for more testing, as my doctors kept reassuring me that I was okay. I was tested for various conditions that could account for the weird test results, but I always had a normal result. My red blood cell counts were way too high, and I had nocturnal hypoxia, so I was started on overnight oxygen. There were some anomalies, but my doctors decided to just monitor me through routine testing and see if things changed down the road.
![nocturnal hypoxemia nocturnal hypoxemia](https://www.psychiatryadvisor.com/wp-content/uploads/sites/8/2021/08/Patient.Hospital.Bed_.Mask_G_1298019774-640x427.jpg)
Tests were run to see if scleroderma was attacking my heart. I was a newly diagnosed systemic sclerosis patient and my doctors began running tests to see if my disease was impacting my lungs. My blood pressure was too low and I had to stop taking my hypertension medicine. I panted for air every time I came up the stairs and I noticed that my lips were turning blue. To fight the virus I was told to go off my immunosuppressant drugs for a few weeks until I got better, stay in bed, and load up on chicken soup: it took a couple of months but eventually I got back on my meds. I scored some antibiotics, steroids, and cough medicine. The BLZ has been waiting a long time for this…įive years ago I came down with the flu and ended up in Urgent Care struggling to breathe.