Age 42, Diagnosed With Pulmonary Alveolar Proteinosis

I had shortness of breath for about 4-6 months, thought I was just getting out of shape...last November spent 12 days in hospital with severe pneumonia...and after many puzzled Doctor's doing every test under the sun...a bronchoscopy revealed that I had PAP. Extremely rare, especially for a non-smoking healthy woman. Mine is apparently the auto-immune form as I have an abundance of the anti-body GM-CSF.
At this point....I am not doing any treatment or on any meds...(from what I understand...options are extremely limited)
Doctor's wanted to watch me for awhile, hoping that I may be in the 25% of people who go into spontaneous remission...but last x-ray revealed that it may be getting worse, and I feel like it is. I am seeing my specialist again this week and will be doing more testing to confirm....I feel a bit overwhelmed by this whole thing and still can't quite beleive that I could possibly have something this rare.
I have 2 young kids, and live a very healthy lifestyle.
I have researched as much as I can....and the only options for treatment I can see are the whole lung lavage, which quite frankly, scares me to death, and an experimental drug...GM-CSF....which from what I have read, seems successful, although my Dr says only 50% success rate....hard to get and extremely expensive.
If anyone out there can share their experience with me or any success stories, I would be very grateful!
Charli70 Charli70
41-45, F
1 Response Mar 17, 2013

I was just diagnosed 2 weeks ago and waiting for my next doctor visit, in 2 weeks to see what my treatment options are.

Hi, just wondering of you've seen your doctor now and what your treatment options are. Since my original post I have had the whole lung lavage (last April) and and currently doing the gm-csf treatment. I'd be happy to chat about my experience so far and learn more about yours. This disease is so rare it's nice to compare notes. Hope all is well!

Charlene

So far the doctor does not want to do anything but watch it. I has been diagnosed a very mild. Still, it concerns me. Please stay in touch. Really could use a friend with the same problem. Hope you are doing well.

That's great that it's very mild. If you don't mind me asking, what were your symptoms for diagnoses? I'm happy to keep in touch and answer any questions! I'm doing pretty well right now, although it seems to slowly be getting worse. It's such a rare one, and not a lot of options for treatment/cure. Take care and keep in touch!

Went to the doctor because I was wheezing and had what I thought was a respiratory infection . After xrays he thought I had pneumonia but I was asymptomatic so I was sent to a specialist. Had a bronscopy but found nothing. Then went thru an open lung biopsy an they found it. I also am healthy and have never smoked. I am 55 and a grandmother of 3 beautiful children who I want to see grow up. Mind boggling isn't it!

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