Thursday, October 13, 2016

tumors, paresis and infections 'Oh my'!

The past few weeks have brought a lot of insight to my breathing difficulties that I've been having for a few years. At Stanford they discovered that my diaphragm is partially paralyzed. The diaphragm is responsible for 80% of lung function, so clearly my diaphragmatic paresis is gonna make breathing harder. Also, I've had bacterial staph/psuedomonas infection somewhere in my airway for the past few months. I've been on antibiotics but the bacterias are still there. So I was referred to a pulmonologist to decide what the next step was. She ordered a stat ct scan, antibiotics, a vibrating vest and another device that will both help break the junk out of my lungs, and then she asked if I ever was tested for cystic fibrosis. 😳 And no, I haven't. So fast forward till now, I have been informed that both bacterias have colonized in my lungs, and that the tumors in my lung cavity are stable. One shows that it is in the pleural space of my right lung (which is like the little pockets in the lung lining) but still I think that needs to be made sure of. Also, if this round of antibiotics doesn't work I will have to get a port placed and get IV antibiotics for a couple weeks. If THAT doesn't work she thinks I for sure need to be tested for cystic fibrosis and that I will probably then have to be admitted and get more intense treatment. These bacterias can get into your blood stream and then become something faaaar more serious. I had no idea till now that there is apparently atypical adult onset cystic fibrosis. She also is gonna have me do another pulmonary function test as well as a sleep study to know even more. Please pray these antibiotics work and that I won't grow more sick. No pneumonia, no cold, no nothing. I have been feeling more tired than normal lately and have repeated bouts of feeling something coming on but it never fully develops. #tumorhater #tumorsfordays #neurofibromatosis

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