A
alikat0079
Guest
Hi everybody,
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.
I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.
As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only really bad bought of hymoptosis. I went to the hospital and they did a bronchoscopy which showed the infection. I had a regular pulmonologist that i saw after the infection was caught and she just assumed it was dormant and didn't treat it. When she retired she recommended i start seeing specialists at university of pennsylvania hospital. They finally figured me out and loaded me up on meds.
As a kid (and adult) i was always really small, but i am ps so that is just genetic for me. I had a lot of sinus infections growing up and thought i has asthma, but the dr said i didn't. Everything was attributed to allergies.
I am now on kalydeco(off label), clofazimine, azythromycin, ethambutol, albuterol, hypertonic saline, and Pulmozyme. They have helped a lot. My last fev was 67%. I haven't had one done since starting the kalydeco though. I am due for one soon and am hoping for a positive jump.
It has been nice to meet you all and read about all of your experiences. You have all helped me more than you know already.
I joined the forum when i was diagnosed with cystic fibrosis this summer, but for some reason I couldn't post under my old screen name.
I was diagnosed in July after my pulmonologist did a full panel of bloodwork. I had previously passed 2 sweat tests. I have moderate bronchiectasis and am culturing m. absessus. I spent 4 weeks on iv antibiotics this summer and got pancreatitus as a side effect. This was my drs big hint.
As i said in the title i am 36yo. I had no idea anything was wrong with my lungs till i got pregnant with my now 4yo son(carrier-d1125h). At 5 weeks pregnant i had my first and only really bad bought of hymoptosis. I went to the hospital and they did a bronchoscopy which showed the infection. I had a regular pulmonologist that i saw after the infection was caught and she just assumed it was dormant and didn't treat it. When she retired she recommended i start seeing specialists at university of pennsylvania hospital. They finally figured me out and loaded me up on meds.
As a kid (and adult) i was always really small, but i am ps so that is just genetic for me. I had a lot of sinus infections growing up and thought i has asthma, but the dr said i didn't. Everything was attributed to allergies.
I am now on kalydeco(off label), clofazimine, azythromycin, ethambutol, albuterol, hypertonic saline, and Pulmozyme. They have helped a lot. My last fev was 67%. I haven't had one done since starting the kalydeco though. I am due for one soon and am hoping for a positive jump.
It has been nice to meet you all and read about all of your experiences. You have all helped me more than you know already.
