Hey everyone.
So I guess I'm a rare case. This is my 2nd time having PAP. The first time, I went into remission without any lavages, gm-csf injections etc.. The doctor had said I had a mild case. I may have met some of you at the PAP Education Day in Los Angeles, at UCLA. It was great meeting you all there and listening to your stories.
i want to see if any of you are a rare case like me. Have you had any relapses and not having lavages done before?
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Chris Hameetman
Aug 27, 2018
John: I am sorry to hear of your relapse... I have heard of this happening before, however, as a baseline to understanding your situation, what test or manner of quantification was used to determine you were in fact in relapse? I am wondering if you simply have/had a very mild form of PAP which simply took a long time to develop a measurable level of symptoms. Would be comfortable providing more details as to the evolution of your condition?
John
Aug 27, 2018
Hi Chris. Good to hear from you. I met you at the PAP Education Day at UCLA. The doctor that I'm seeing did a walking test and a CT Scan on me. He said the CT scan looked very identical to my CT Scan from 4 years ago (when I had it). Plus my saturations had a pretty significant drop during my walking test. So it were those two factors that determined it.
John
Aug 27, 2018
Also I forgot to mention the Pulmonary function tests too.
Chris Hameetman
Aug 28, 2018
@John Yes - I remember meeting you at UCLA! As to your tests, I was more asking about the "period of remission." If you look at a PAP Patient's historic PFT chart, for example, results when such person has a series of lung lavages, will show PFTs down, then lavage, then up, then degradation to the prior low, then another lavage, then back up, etc. So in your years years of remission, did you have test results and CT scans showing or indicating clean lungs?
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John: I am sorry to hear of your relapse... I have heard of this happening before, however, as a baseline to understanding your situation, what test or manner of quantification was used to determine you were in fact in relapse? I am wondering if you simply have/had a very mild form of PAP which simply took a long time to develop a measurable level of symptoms. Would be comfortable providing more details as to the evolution of your condition?
Hi Chris. Good to hear from you. I met you at the PAP Education Day at UCLA. The doctor that I'm seeing did a walking test and a CT Scan on me. He said the CT scan looked very identical to my CT Scan from 4 years ago (when I had it). Plus my saturations had a pretty significant drop during my walking test. So it were those two factors that determined it.
Also I forgot to mention the Pulmonary function tests too.
@John Yes - I remember meeting you at UCLA! As to your tests, I was more asking about the "period of remission." If you look at a PAP Patient's historic PFT chart, for example, results when such person has a series of lung lavages, will show PFTs down, then lavage, then up, then degradation to the prior low, then another lavage, then back up, etc. So in your years years of remission, did you have test results and CT scans showing or indicating clean lungs?