Ok...long story as short as I can: smoked for 10 years, quit for 4, smoked for 4 months, quit again. In the midst of the second stint of smoking, got pregnant (quit immediate). Days after the positive pregnancy test, got some sort of viral respiratory infection. Breathing troubles began (shortness of breath, nearly passing out with small activity, feeling weak, gasping for breath at times, etc). Even went to ER at 8 weeks pregnant with gasping, O2 @ 96, they took chest X-ray and SAID it was fine (I'm working on getting a copy). Primary doc gave me an inhaler and nebulizer at 9 weeks pregnant because breathinng troubles still present. Started bleeding and found out baby died at 12 weeks pregnant (baby measured 8.5 weeks), had general anesthesia D&C. 4 days later, spiked a fever, back to ER and admitted for ultra low O2 sats (in the 70s when I would lay down). Cat scan showed "all over ground glass opacities", brohoncoscopy resulted in only one biopsy and just showed generalized inflammation. Started IV steroids, then at home oral steroids with an 8 week taper from 80 to 2.5/day. I've been off for a week, had doc appt with pulmonary function tests when I'd been off for only a few days...function shows nearly the same with diffusion showing a 10% DECREASE! The doc says diffusion isn't a good predictor and that, in general, it shows a 10% improvement despite 90% of the ground glass opacities being gone (follow up cat). Diagnosed me with acute interstitial lung disease, told me to lose 20 lbs (really I need to lose more like 60!) and come back in 3 months for more function tests. Now I am on vacation and having some tightness and shortness of breath under activity. I'm panicking because I thought this whole thing was really no big deal but everything i read online is a death sentence .... I read auto immune plays into it....I have been told I MAY have Ehlers Danlos Syndrome...super loose joints, I've always had eczema. Thoughts!!?
It is important to find the cause of ILD. It could be a specific exposure to some fumes, paints, asbestos etc or some drug you took. If no cause is found then corticosteroids and oxygen therapy can help. Other than this, you need to slowly build up your stamina, eat healthy and lose weight. Please discus this treatment strategy in detail with your treating doctor and start working with a dietician and a physiotherapist to start with. Next you may need to join a physical trainer. Please start with deep breathing exercises. This will help ward off a panic attack and also allow more inhalation of oxygen rich air. Take care!
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