I’ve been sick for 3.5 years following a routine endoscopic sinus surgery and can’t get a diagnosis, so I don’t have a solid treatment plan. At times it’s wreaked havoc with my mental wellbeing.

I was diagnosed at 58. I’ve had bronchitis and sinus infections multiple times a year since childhood, and several bouts of pneumonia. So many that a doctor a few years ago looked at my chart and said “you take way too many antibiotics, I’m going to put a note in your chart that says no more antibiotics”. But she never thought to test why I…

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The biggest shock is that it wasn’t actually a shock to receive my diagnoses 5 months ago at age 58. I feel like it’s something I always suspected in the back of my mind. It was somewhat of a relief to pinpoint the cause of so many of my medical issues, and to know that I now had the strength of a diagnosis to allow me to receive the treatments… Read more

Hi Tim. Thanks for the reply. I have 7T/7T mutations so am not eligible for Trikafta, though I just read today that it’s proving very helpful in clearing aspergillosis. I’m seeing my CF doc next week and I’ll be asking him for more help than fluconazole is offering me. It’s promising to hear that new information is  coming out about co-morbidities.

It’s fascinating to me to read these stories.  Mine is so similar.  Diagnosed a few months ago at age 58, so many episodes of bronchitis I can’t even count, multiple rounds of pneumonia, and currently a nasty sinus infection that won’t go away (going on 2 years now).  I also so badly wish I’d been diagnosed earlier.  Like many of you, I have… Read more