Hey guys, I'm a 24 year old from Australia, was diagnosed with Pulmonary Alveolar Proteinosis (autoimmune) at the end of last year, been experiencing the symptoms for about a year. I've already gone through the biopsy and my first complete lung lavage of both sides. Because of the illness I've left my job due to stress and fatigue and now need to find a new career path that's more suiting. Been searching around the internet for a while now to see if there's a place where others in my shoes are having an open discussion and talking about dealing with everyday life, and due to how rare this is, it seems like there's almost no one out there. Wanting to know what success others have had with ongoing lung lavages, oxygen therapy, and GM-CSF spray, and even physiotherapy or finding a right diet (anything that makes a little difference) has it made life easier? At the moment I'm not the clinical trial yet and not on oxygen therapy, although I always feel great on oxygen/just coming out of hospital after the lavage. Wanting to hear from anyone with how they've coped and if there's any other forums/communities where people regularly talk about this.
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alexstone93
May 12, 2018
24 Years old diagnosed with PAP in 2017
24 Years old diagnosed with PAP in 2017
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hi sorry to hear about your disease. i'm a PAP doctor in los angeles and trying to connect patients more. we have had good success with both lung lavages and GM-CSF medication and i encourage you to enroll into a clinical trial if possible. in australia rob stirling seems to be a PAP expert so perhaps try and see him. let us know if we can help.
sorry to hear you have been diagnosed with PAP. i too jave been dianoaed after an open lung biopsy in 2014. im hear in south louisiaba where drs have never had a patient with this. after many stays in the hospital, on stersteriods, antibiotics, nothing was working. my pylmonsry dr reached out to several drs from all around to see how to treat this rsre disease. i had a lung wash on my left aide only for it to be filled back up within minutes. i was an obese 36 yr old fighting for me life . i was on a ventilator and o2 therapy 24 hours a day. i did 90 daya of gmcaf injections faithly at the hoshospital everyday! i started vest therapy and i currently use a cpap at night to keep my chest wall opened. .y lung funcruon has improved but i still have spots that are concerning. i feel great as i have lost weight aftrr going through gastric bypass surgery 3 yrs tomorrow but i still get the symptoms of pap. im waiting on a ct scan to see what will be the next step as far as treatment. having this rare disease, i too had to leave my job and i limit myself around people who have colds, illness etc... ill wear a mask to keep myself protected. by no means has this been easy for myself or my family but my dr has been an angel snd saved my life. she continues to work on getting me in remissions and clearer lungs. never give up!!!
Glad to hear you've had some success even though still suffering with it. Here where I live, its also completely unheard of, and my only surgeon with knowledge and experience with doing lavages has decided he doesn't want to do the procedure anymore, for reasons I'm completely unsure of. Now there's no one else in South Australia with the experience to help me and I've been rejected by the pharmaceutical companies for the GM-CS F treatment due to them deciding that the lung lavages aren't 'treatment failure' for me and other treatment called Rituximab has even less prove of helping me even though I've heard a lot of success with it. So at the moment I'm denied all pharmaceutical treatment and have to find a new person elsewhere to do my lavages, seems like I wont get any support until I can no longer breathe. But mentally I'm doing well and still quite positive about it all, strangely enough.
As frustrating as it can be having this rare disease, i feel good. I hope in the near future you can get the care you need to help you heal. Healthcare all around can be frustraing especialy with denials and no help. Noone knows what its like not to be able to take a breath unless they too suffer with PAP. I wiah you well. Keep posting as i will do the same. I have a ct scan next week and waiting on approval for gmcsf inhaled therapy.