We all have struggles when it comes to cystic fibrosis and they are all different from person to person. Some of us suffer with GI issues, not able to gain weight, sinus issues with nasal polyps, chronic lung infections that constantly decrease our ability to breathe, fertility issues making it harder to create a family, the list goes on and on.
But then there is the struggle with our numbers………….Yes, our numbers. When we attend CF clinic we always do the same routinely tests/measurements. Some of us dread stepping on the scale as many of us could eat three or four times the amount of food than a normal person in a day and not even gain a single ounce.
Then there is that lovely test called a pulmonary function test (PFT)!!!! All cfers are supposed to have a PFT at least every 3 months. The PFT measures how well our lungs are functioning compared to a normal non CFer. For those of you who are not familiar with a PFT, I sit in what looks like a telephone booth with a pipe in my mouth and nose clips on. I am then told to breathe normal for a few breaths and then take a deep breath in and blast it out as fast as I can.So if you would like to try this at home here is how I suggest attempting a PFT. Find a paper towel roll and put it in your mouth (don’t eat it or choke on it please) and plug your nose with your fingers. Take a few breaths in and then a deep breath in and blast it out.
The PFT measures our FEV1 score. The FEV1 score is determined by how much volume of air is blown out at the end of the first second which is measured in a percentage.As CF is a progressive disease, our FEV1 will start to decline as the disease progresses. When you hear someone say they only have half their lung function that means their FEV1 is 50% which is the equivalent of breathing with one lung! Doesn’t sound fun does it?
The PFT is my biggest battle when it comes to my clinic visit and I know I am not alone. The main reason I think it’s my biggest battle is I put SO MUCH weight and pressure on that number. I really should be concerned with how I feel and other aspects. I will get into all that later in this post. But when I/we see our FEV1 number declining there a zillion thoughts that start to play through my head. Why is my number dropping from 3 months ago and I feel fine? Do I have a cold? Is something irritating my lungs or breathing? Is my PFT form correct? Did I do my hypertonic saline and vest to close to my time for my clinic visit? Are my allergies irritating me today? Is my disease progressing? Do I need to be on antibiotics or is it time for my FIRST ever hospital stay? Will I be on this planet long enough to see my daughter get married? I don’t like this PFT tech as they do not motivate me? As you can see these are some of the various questions that go through my mind and there are a bunch more!
But I wanted to share my response I left a mother who has a daughter with CF battling my same battle………THE PFT!
What things have helped raise your (or your child's) FEV1 the most?
Despite all we are doing both natural (tons) and conventional, HER FEV1 was down 3% today from three months ago and she is so disappointed. It's extremely difficult for a 15 yr old (or anyone, for that matter) to stay motivated and keep up such a demanding regimen when she doesn't see the results on her PFTs. Could she have allergies in addition to CF that are keeping her constricted? Need more physio? Any ideas welcome as we need some positive vibes coming our way! Thanks
Despite all we are doing both natural (tons) and conventional, HER FEV1 was down 3% today from three months ago and she is so disappointed. It's extremely difficult for a 15 yr old (or anyone, for that matter) to stay motivated and keep up such a demanding regimen when she doesn't see the results on her PFTs. Could she have allergies in addition to CF that are keeping her constricted? Need more physio? Any ideas welcome as we need some positive vibes coming our way! Thanks
There were various comments left on Facebook for this awesome young CFer. They included PFT techniques, exercising advice, supplement advice, airway clearance techniques, and many other suggestions.
Here is my response……………
As many have mentioned I think we all hate the PFT chamber. At least I do. I honestly think this is one of the most questionable tests for any of us CFers because there are so many variables that are in play. For me, my nerves start to kick in when it comes to PFT tests. I think that's because I put a lot of weight on the numbers. When I start to get nervous it fuels stress which doesn't allow me to get the deep breaths in and I start to feel my chest get tight.
Also, I have a certain PFT tech that I don't care for and I felt always added pressure to my PFT. Then on top of that you may not be feeling to well that day because of many reasons. You may be suffering from a minor cold that isn’t CF related or even allergies. I can recall, at clinic beforethere was this strong smell of perfume and another time a strong smell of bleach. Those smells definitely made it more challenging for me to breathe. A cold and allergies will almost always push our numbers down as our lungs and throat are irritated.
I just feel that WE all place way to much emphasis on thisPFT number. I honestly wish they would get rid of the numbers on the PFT test and just come up with you are in your baseline range or you are slightly below baseline or above etc. I feel that way this 3% drop your daughter had would be a mute point. A 3% drop is relatively unchanged.In all honesty, who knows what it could have been a day ago or even today. To me the PFT test is just a number in that instance. It's always fluctuating through the day and we can even change that number based on treatments we are doing. I have read if you do a treatment or HTS an hour or so before PFT you might have inflammation or irritationfrom the neb. So you can see my point that there are so many factors in this lovely test.
Just remember this we do not just do a PFT at clinic and go home!!!! There is so much more involved in our clinic visits. The doctor listening to our chest, weight checks, pulse ox, questions about how we feel, how we have been doing with treatments etc. My doctor has told me the PFT test is one of the most "quirky" tests and it's just one piece of the puzzle.
Cyster’s name, please do not lose sleep over this. This is coming from a 28 year old fibro who still does not know how to properly do a PFT. I have been doing these tests for years and I feel half the battle is mastering the proper technique when it comes to PFTs. I find myself worrying if I have a good tight fit with my mouth on the pipe. Or maybe my tongue is in the way during the test. I then find myself questioning if I should cut back my blast out as maybe I am restricting air flow with that huge blast out. As you can see a lot of this is a MENTAL battle!!!
The most important questions we need to be asking ourselves are these…..Please , ask yourself how am I feeling? Are you able to do the things you always have with ease? Is your appetites good? Are you breathless more often? How is your mucus production? How is my compliance to airway treatment? These secondary endpoint measurements are just as important or are MORE important than that PFT score. Keep doing what you are doing cyster.You are already seeing the true impacts of said pill with those big changes in fev1 since you started. Keep this in mind, our battles are not just won on clinic days they are won every day we put forth are best effort outside of clinic!If you have any questions or want any more advice when it comes to PFTs let me know :)
I also went on to suggest adding hypertonic saline as many of you know I LOVE it! If you cannot handle the 7% solution try to add the 5% or 3% solution. HTS works wonders for me when it comes to clearing out the wind bags.
This is something I think we all need to ponder………….I mentioned how the PFT is just a measure at that singlepoint in time at clinic and who knows what our PFT was yesterday or even 3 hours before the test. But why do we only do PFT’s 4 times a year (assuming you go to clinic every 3 months)???? I think we need to question whether we need to have more at home monitoring when it comes to our CF care case in point PFT’s. I can recall as a kidinvolved in a study where we had these little machines that we blew in that measured our FEV1. I do not remember how often we were required to measure our FEV1 but I think it was beyond valuable for me. I recall my mom attaching this monitor to the phone and transmitting the data to the clinic. Just think now we can do all that stuff online and with computer software so it would be much more useful to the patient and doctor. I suggest that we either invest in machines or have this part of our care just like the vest is. I would only suggest using these FEV1 monitors if they produce results close to the real machines at clinic ; )
The flipside to this is……I know there are people who will not buy a scale in their house as they will obsess over their weight every day and I can see this same aspect for a FEV1 monitor. But what I am suggesting is that maybe we use the monitor once a week or whatever makes you feel more at ease. This will also provide us with more knowledge of when maybe we are feeling sick and need to call clinic to get a tune up. We can also use this monitor to see what happens to our FEV1 when we have a cold. But another big aspect of this at home monitoring system is it will reduce the risk of cross infection!! Anyone else get all germaphobic when you enter the PFT room? I know I do!Maybe these at home monitors (if everyone has the same model) will replace/reduce the need to do PFT’s at clinic every 3 months. This is all food for thought : )
Thanks for reading my LONG post!! Please if you have any more suggestions on PFT’s for this young cyster in our community please leave a comment. I know the two of them will be reading this post.
