That's right . . . I haven't been outright refused the basic data in written form as long as I want to wait a couple of months and pay for them. It definitely discourages it. It just really seems rather silly since the doc shows me the sheet when I'm there and discusses some of the results with me. I understand HIPPA prohibits disclosure of identifying information in written form, but heck I'm sitting there already, I'm known to them as the parent, and . . . . They're discussing it with me! So if need be, take a sharpie and draw a line through the identifying information if we want to be silly about it. Lets face it, sometimes corporate types (as well as the rest of us) do things they think they have to do even when they make no sense.
I agree that if this were a control issue, I.e. I want it so you should give it to me even if I just threw it in the trash kind of attitude then I would - or should - ignore this. Pressing the issue just because you can is a pretty typical adolescent attitude and effort wasting endeavor. I don't mean to offend adolescents - I'm just recognizing the personal evolution to discriminate fights worth fighting.
But that simply not it. My problem has always been what I perceive as my only partial ability to appreciate what they're saying and its significance in the middle of a session when so many topics are discussed and my little guy is already climbing the walls from boredom as I try to control him. In addition, I don't feel as though I've had the significance of each measurement (or it's INsignificance as it may be) explained to me in sufficient terms for me to fully understand. it's as though I wish somebody had given me a decent handbook on PFTs at some point so I could self-educate instead of figuring everything out as I go along on th CF journey, piece by piece. Not that they wouldnt explain each measurement as I ask, but I dont absorb it all as i sit there. There are times some of the values have been mentioned as significant for that visit or for some particular purpose at that time, when they haven't been mentioned before. So, in my efforts to be thorough and comprehend as much as possible, I would love to have the printout, so I could study it a bit and familiarize myself with the various measurements, what they mean, and how theyve change over time....and what that would mean too. And that way I can formulate further questions in reflection. How many of us walk out of a docs office wishing they asked another question that didn't occur at the time?
The significance of these measurements is obvious from all the replies here - and especially the way SO MANY people are plotting their values on spreadsheets. And the personal significance has become obvious to me in many ways, including finding out that there was a pattern to my little guys ups and downs that appeared to be related to the season since we moved into a wetter, more moldy allergen filled climate. I don't feel comfortable that we know - or the doc can know - all the factors affecting my sons individual ups and downs. And I can't know what to report to the doc, or to look for, or consider, without the data sitting in front of me. Over a period of time. I do not pretend to know the significance of everything the way the pulmonologist or CF Team does. But I consider myself a very significant partner in this detective work and my knowledge and insight is being under utilized by not partnering with me in a more effective way.
Ok. I'll step down from my soapbox. The information everyone has provided has shown me that my CF Center may well be one of the FEW that doesn't provide the informational report to the parent or patients, and that my concern appears well founded.
I can see another round coming at the next clinic visit. I am more convinced that the failure to provide this information may be compromising or at least hampering the care my DS receives. Unacceptable.
