Respiratory Disorders Expert Forum
Rare lung disease
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Rare lung disease

A few years ago, I was diagnosed with a rare lung disease - Pulmonary Alveoli Microlithiasis - about which not much is known.  Prior, I had been a runner in top condition (ran two marathons, ran daily) and it was caught by a fluke.

I need to get my lung functions tests done for comparison against the baseline established two years ago, as I have some diminishment in function and minimal diminishment in oxygen intake.
I am a full time doctoral student, teach and moved back to my home state of Maine for better air quality and school.  After a few years of not being in shape (I let myself go after the diagnosis, and missed being able to fit into my pants), I have now gotten back into shape and regularly walk, bike and hike.  I can no longer run comfortably, but that is not a great tragedy.

My question for the forum and spcialists is this:  I am in good shape, am at the right weight for my height, do not drink alcohol, am a vegetarian, keep my coffee intake to a reasonable minimum and work hard to keep stress at bay.  I cannot, however, climb stairs.  I make myself do it several times a day in the hopes that I will build stamina, but it is getting harder and harder, not easier.  I get out of breath, dizzy and am sometimes forced to take the elevator. I can bike several miles, flat out, without getting too out of breath, hit the stairs and be completely floored.

One suggestion I had was to do stair climbing workouts, as this is a different type of exercise than running, etc. Another, though, was that it might be my blood pressure. Should I consider blood pressure or cardiac, or just chalk it up to my disease? There is, incidentally, not a cure or treatment for my disease save for some experiemental stuff and lung transplant.

Thank you!
242588_tn?1224275300
Mutations in Gene SLC34A2, the type IIb sodium-phosphate co-transporter gene, cause pulmonary alveolar microlithiasis and are possibly associated with testicular microlithiasis.  Pulmonary alveolar microlithiasis affects people at every age beginning from the early childhood.  It occurs probably as a result of autosomal recessive transmission.  Familial occurrence is often found with family history of the disease being present in up to 50% of the reported cases.

One study concluded that testicular microlithiasis and poor sperm function represent risk factors for testicular cancer: in our study, 30.6% of the patients who developed cancer presented these features.  At ultrasound examination, testicular microlithiasis is often associated with testicular cancer (53.8%).

Pulmonary hypertension can occur secondary to alveolar microlithiasis and has been treated with Bosentan:  You should be checked for pulmonary hypertension, as a cause of your shortness of breath.

Exercise capacity is closely related to the specific training activity and that may account for the disparity between your cycling capacity and the stair climbing shortness of breath.  One approach to this would be to do physiologic monitoring of your heart and lungs while on a stair master.
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