Originally posted in Cystic Fibrosis - Diagnosis

This is my first visit to this forum and site. &nbsp;I found it because my pulmonologist called me today and freaked me out, but let's start at the beginning.<div><br></div><div>I was diagnosed with CF via sweat test when I was 26. &nbsp;Throughout my life I'd always been&nbsp;susceptible&nbsp;to sinus and pulmonary issues–chronic sinus infections and&nbsp;bronchitis. &nbsp;My mom said I was very sickly after I was born (I was adopted) and that I'd always had breathing issues–my sinuses were so bad, that I had both nostrils cauterized when I was 9 because of bleeding. &nbsp;When I was 8 or so I remember going to a hospital to get tests to see if I had asthma. &nbsp;Apparently not, because I never had to use an inhaler or anything else as a child.</div><div><br></div><div>It wasn't until I was older that I really started having issues with chronic bronchitus and sinusitus – at least twice a year on the bronch. and 3 or 4 on the sinus. &nbsp;After awhile treatment usually involved heavy hitting antibiotics like levaquin combined with an inhaler and&nbsp;
guaifesenin (back before Muconex). When I graduated college I wound up with pneumonia and the physician who read my chest x-rays said: "wow, you've got some bronchiectisus going on, but it could just be related to the pneumonia." &nbsp;Never had another chest xray after that. &nbsp;My primary care said I likely had RAD, not asthma (really, what's the diff? *shakes head*)</div><div><br></div><div>I lived in Northern NV and one summer we had a particularly horrendous bout of wildfires and the smoke wreaked hell on my breathing and my inhalers that I had for my RAD just weren't keeping pace with my need for them. &nbsp;Finally, my Dr. sent me to a pulmonologist who asked me all these questions I'd never been asked before: how were my stools, did I have salt on my skin after sweating (yes), how often was I coughing (all the time, but worse in the AM and at night), was it ALWAYS productive–even when I wasn't "sick" (yes), did my phlem have a 'sweet' taste (yep)?</div><div><br></div><div>Once he told me his suspicions of CF I kinda brushed it off- I'm NOT the typical symptomatic CF patient: I'm obese, I have high lung capacity and lung function, I have no other illnesses – digestive, heart or otherwise. But he did and allergy panel, a sleep study and the sweat-test (which came back positive) and based on all that, the chest x-rays and the bronchiectisus he saw, felt comfortable diagnosing me with CF-if a &nbsp;mild mutation. &nbsp;I was put on a nasal spray and an albuterol and steroid inhaler&nbsp;regimen.</div><div><br></div><div>For years that's all I did. &nbsp;Until recently. &nbsp;I moved to VA, had a pulmo who said I should just keep doing what I was doing because I seemed fine. &nbsp;Then I quit my job and was without insurance for about 2 years.</div><div><br></div><div>Finally, my job got insurance and I hadn't seen a pulmonologist recently. I told my pcp Dr. my earlier diagnosis, she sent me to a pulmo in the area and he ran a genetic test on me. &nbsp;Turns up positive: mild mutation (I'd have to look at the form to know which one), but yup, I've got CF. &nbsp;So they hand me a nebulizer (oh, wow, I've only ever seen kids use this!) and 3 different solutions for it.</div><div><br></div><div>So I'm doing that and I'm good up until last year around this time. Since then I've felt very…off? &nbsp;Fatigued, short of breath all the time, sputum is one color then another, but never dark brown or green so I don't really worry…etc. &nbsp;So I get a CAT scan, a Chest and a PFT and based on those she gets me a flutter and&nbsp;&nbsp;I have to do my medications 2 times a day (it's an hour long process each time) and she gives me an antibiotic which seems to improve things…slightly.</div><div><br></div><div>So last June , my job gets new insurance, so I wind up with a new Pulmo. &nbsp;This one sees me and is like, "what do you mean you don't have a chest vest and aren't doing your nebulizer 3 times a day instead of 2?" &nbsp;So I get another CT and chest xray and sputum cultures and a billion blood tests. She got me a chest vest (which I HATE–it makes me nauseated and gives me a headache) and I have to do my medications 3 times a day.</div><div><br></div><div>So those tests. &nbsp;When I went to see her a week ago, she was upset that her office hadn't gotten a hold of me to come in sooner because my cultures and blood tests came back with&nbsp;aspergillus (which is the one thing I'm allergic to), staph. &nbsp;So she's pretty positive after looking over ALL my history that I have ABPA (though she wants one more blood test to be 100% positive) and puts me on an antifungal, antibiotic and HUGE doses of steroids–for 8 months. &nbsp;*lays down*</div><div><br></div><div>Got a phone call from her today saying I've got MAI. &nbsp;She was freaking me out because honestly? &nbsp;She sounded a little freaked out. &nbsp;So now I'm scheduled to see an infectious disease specialist on Friday and based on all the things I've seen I'll now be on more drugs for up to 24 months. &nbsp;*tries to remember to breathe*</div><div><br></div><div>So there's my story. &nbsp;Long and likely overly detailed, but….</div><div><br></div><div>Oh, and HI! &nbsp;*waves*</div>