Check your FEV1 at home...EVERY DAY!

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Blue

New member
About 2 weeks ago my doctor gave me a spirometry (PICO) meter to monitor my FEV1 at home. I requested it and they were more than pleased to give it to me with instructions to monitor my FEV1 daily and come in if/when I notice a consistent decline. Awesome!

I assumed that my numbers would be close to the same every day; but what I've found is that my FEV1 can vary a good .30 pts per day which will translate into a 10% variation! AND it can vary that much throughout the day as well. I'm not sure about you all but when I go to clinic and get my FEV1 results, that can either make or break my mood especially if I'm 10% lower than my last visit (which will generally begin the conversation about IV's). But since I've had this meter I've realized that my numbers can vary greatly so this has become a FAR more effective way to determine if we need medical intervention than that ONE clinic visit every 3 months. If I notice my numbers are dropping and STAY low, it's time to see the Dr.. I've also noticed that lack of sleep or significant stress can pull me down 10% in a number of hours.

I would seriously encourage everyone to ask their doctor if they can have a spirometry meter or invest in one on your own. I honestly can't believe I didn't ask for one sooner...
 
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Melissa75

Administrator
What a great point. I want home spirometry to look at trends in my numbers, and what you're saying makes a lot of sense. That it is not just day-to-day ups and downs that are interesting. Over a longer period of time--one that may include ups and downs--you might see a larger trend that could be possibly more valuable than that single snapshot you get at the drs office. I love graphs, so I would make a powerpoint. :)
 
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marcijo

Guest
Did your insurance cover the meter? I want to talk to my doctor about this when I go to clinic in a few weeks.
 
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nocode

New member
Thanks for this! I am about to purchase one online. How do you convert the results to percentage? I think the results indicate the liters right?
 
J

Jane

Digital opinion leader
Much to our dismay, our doctor did not approve our request to get a home spirometer. She called in the whole team to discuss and they "felt it was best for spirometery to be done in a supervised clinic setting so that results coud be properly evaluated".
I was shocked! I never expected such a reaction. Why is our doctor so off base here? How do others get approval?
 
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RytheStunner

Guest
@Nocode - you divide the value of what you blow by the reference value in order to get your percent predicted.
 
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JENNYC

New member
We have one and I love it!! It helped me know when she got walking pneumonia because I could only hear her rattling when she tried to do a PFT, plus the dropped PFT's of course. :) Jane it is very inexpensive and you do not need a prescription for it or permission. We got ours off of Amazon. And we checked it with the clinics machine and it matched beautifully.
 
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calebf

New member
Excellent post! Totally agree! Data is power in managing CF.

I've been tracking my FEV1 daily since May. There are definitely variations when tracking daily. They follow a trend though and have substantially helped me in tracking my condition. Charting the 7 day rolling average can be helpful in smoothing out the variations and show more accurately where you're tracking.

I use an Excel spreadsheet to track the data, create the charts, and calculate the rolling average. I have a notes column in order to look for patterns. Sleep, lowering stress, and med compliance instantly became my top priorities. For example, I found that on most Mondays I saw a spike (extra sleep and decrease of stress over the weekend). I note starts/stops of meds/supplements, how I am feeling, extra stressors, and anything else that may have an effect.

Also those with an asthma component may want to also track PEF (Peak Flow). My asthma component is huge, and I was trying to separate the CF and asthma better. Tracking both to symptoms has given me some extraordinary insights and helped change my behavior to address infections versus asthma symptoms (starting antibiotics faster, drinking more water, adding/dropping certain supplements).

I am also looking to layer in sugar levels (pre-diabetic), weight, diet parameters (meals, calories, etc) , and exercise in my data. Tracking everything consistently is a challenge, but if you can I think it's extremely helpful. For me I feel like I have much more control, and its started to show at the clinic. I increased my baseline for the first time in years.

The spirometer I use is a MicroLife spirometer. It was $40 on Amazon and tracks FEV1 and PEF. I'd like to find a device that tracks FEF 25%-75% and FVC as well. Has anyone has seen anything under $200 that tracks these? Around $250 with a prescription required is the lowest I've seen.
 
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tgbaker

Guest
Calebf,

Great post, I'm going to create a spreadsheet and track all the things you talked about. Have you looked at the SpiroPD? It cost $219 and it performs all the functions you are looking for. I've been very pleased with mine.

Tammy
 
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Melissa75

Administrator
Calebf,
Ditto Tammy's thanks for sharing your spreadsheet methodology. I'm going to try to do something like that as well
...now that i have electricity again!
 
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Dwmarchb

Guest
How do you get the sprio pd? Is that 219 a copay or full price?
 
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