FVC test- wording for request

[ShiftKicker]

I'm still having sleep issues. I will be going to a sleep clinic in about 3 weeks, but one of my doctors wants to have respiratory testing done first so I can hand it over to the sleep specialist as a baseline for my sleep test. While I doubt I'll get much sleep in whilst being watched by people via monitor, I'm excited to finally do this.

My family doctor is happy to refer me to a respiratory clinic first to get my FVC tested properly. She is unaware of the need for testing whilst lying down (vs the normal seated position) and does not know how to word it on the referral properly or whether it's even considered necessary. It was something I had brought up, in response to several posts here on this forum about the difference it can make. Does anyone have any words of wisdom about what to tell the doctor with regards to the wording needed to convince the respirologist to do the testing lying down? She's just taking my word for it, but I'd love to have some back up medical literature in this case.

The ALS clinic I go to is very passive and essentially leaves all care to the family doctor (Who I am very thankful for- she's great). They are also quite a trek from where I live- so it's simpler to visit with a respirologist closer to me.

Has anyone else been able to convince a respirologist who isn't aware of the MND need for testing lying down to do so? I'm hoping there's something specifically addressing this need I can refer to out there that someone can point out- otherwise I'll just feel like I'm talking through a hole in my head.

Thank you

 

[Nikki J]

I don't know how the order was worded as I did not see it but what I had was full Pfts seated and also fvc supine. I think you want more than just the fvc seated and supine. In the US the person who does the test is ( or should be) following the physician's orders. If fvc is ordered to be done supine then it should be. Is it different in Canada?

 

[chally]

Hey, just had both sleep study& FVC done. As for sleep study I was concerned about being hooked up to lots of wires and then supposed to perform sleep. It wasn't bad they say out of 8 hr I lightly slept 4 and no apnea. Good! I just insisted that they do the test laying down and the tech called the pulmonologist and he said do both plus an co2 blood test. Co2 was good. I dropped from 96 down to 82 FVC not to bad. Had to lay down in my pwc as their machine had no way to get prone but we made it work. Be firm, get what you want don't back down! Love ya chally

 

[ShiftKicker]

Nikki- Yep. Whatever the doctor order is, is what the respiratory clinic should conduct. My doctor was not sure of the wording, as the referral form is standardized and has several boxes to tick for what she is requesting- none of which has a "supine" category. She wanted to make sure they wouldn't be confused or intransigent about it if she didn't make the correct request in the "special instructions" box. She's never ordered anything like it before, knows nothing about MND breathing needs or issues, and is just going based on my request (which is pretty nice of her). She's received zero instruction from the ALS clinic, and has yet to receive their clinic report from last month when I was there last. She's flying blind.

 

[lgelb]

See this list. You want the first four things in the lefthand column. The first one should be worded "Upright and supine spirometry. Indication:motor neuron disease" or however it's done in Canada.

 

[ShiftKicker]

Thanks- that's perfect. I'll take this to the doctor.