This is my first visit to this forum and site. I found it because my pulmonologist called me today and freaked me out, but let's start at the beginning.<br>I was diagnosed with CF via sweat test when I was 26. Throughout my life I'd always beensusceptibleto sinus and pulmonary issues--chronic sinus infections andbronchitis. 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. When I was 8 or so I remember going to a hospital to get tests to see if I had asthma. Apparently not, because I never had to use an inhaler or anything else as a child.<br>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. After awhile treatment usually involved heavy hitting antibiotics like levaquin combined with an inhaler and
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." Never had another chest xray after that. My primary care said I likely had RAD, not asthma (really, what's the diff? *shakes head*)<br>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. 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)?<br>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 mild mutation. I was put on a nasal spray and an albuterol and steroid inhalerregimen.<br>For years that's all I did. Until recently. I moved to VA, had a pulmo who said I should just keep doing what I was doing because I seemed fine. Then I quit my job and was without insurance for about 2 years.<br>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. Turns up positive: mild mutation (I'd have to look at the form to know which one), but yup, I've got CF. So they hand me a nebulizer (oh, wow, I've only ever seen kids use this!) and 3 different solutions for it.<br>So I'm doing that and I'm good up until last year around this time. Since then I've felt very...off? 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. So I get a CAT scan, a Chest and a PFT and based on those she gets me a flutter andI 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.<br>So last June , my job gets new insurance, so I wind up with a new Pulmo. 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?" 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.<br>So those tests. 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 withaspergillus (which is the one thing I'm allergic to), staph. 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. *lays down*<br>Got a phone call from her today saying I've got MAI. She was freaking me out because honestly? She sounded a little freaked out. 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. *tries to remember to breathe*<br>So there's my story. Long and likely overly detailed, but....<br>Oh, and HI! *waves*
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." Never had another chest xray after that. My primary care said I likely had RAD, not asthma (really, what's the diff? *shakes head*)<br>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. 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)?<br>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 mild mutation. I was put on a nasal spray and an albuterol and steroid inhalerregimen.<br>For years that's all I did. Until recently. I moved to VA, had a pulmo who said I should just keep doing what I was doing because I seemed fine. Then I quit my job and was without insurance for about 2 years.<br>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. Turns up positive: mild mutation (I'd have to look at the form to know which one), but yup, I've got CF. So they hand me a nebulizer (oh, wow, I've only ever seen kids use this!) and 3 different solutions for it.<br>So I'm doing that and I'm good up until last year around this time. Since then I've felt very...off? 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. So I get a CAT scan, a Chest and a PFT and based on those she gets me a flutter andI 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.<br>So last June , my job gets new insurance, so I wind up with a new Pulmo. 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?" 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.<br>So those tests. 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 withaspergillus (which is the one thing I'm allergic to), staph. 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. *lays down*<br>Got a phone call from her today saying I've got MAI. She was freaking me out because honestly? She sounded a little freaked out. 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. *tries to remember to breathe*<br>So there's my story. Long and likely overly detailed, but....<br>Oh, and HI! *waves*