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Apparently it's very rare so I'm probably alone in this, but it would be nice to find a fellow sufferer to compare notes!
Roughly 10 years ago I had a chest infection that just wouldn't clear and was sent for a chest x-Ray for the first time in my life. I'd been treated for asthma for some years, but the chest x-Ray revealed a very rare congenital condition. After regular consultations and repeat x-Rays over the years, I have now been discharged, something I'm not entirely happy about.
I have a hypoplastic right lung with pulmonary atresia and chronic bronchiectasis. My heart is also displaced. I've had an MRI of my heart as normal heart function tests did not allow a full view of its function. It's fine apparently.
So my main symptom is bronchiectasis. As I've had it all my life I'm not really sure what is normal! I regularly have to clear my throat/chest, am prone to chest infections and have a constant pain around my lower right rib, presumably as the lung in that area is cystic.
Does anyone else find that symptoms are worse this time of year, hay fever I suppose? It's really difficult for my GP to diagnose an infection as my lung constantly sounds crackly, so I'm told. I do worry that something more sinister might develop in the cystic region of my lung, especially now that I don't have regular x-Rays.
Does this sound familiar to anyone else? Any words of advice please?
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