PFT inconsistency

[mellimoo91]

Hi everyone I was just wondering, is it normal for someone's PFTs
to fluctuate frequently? I have noticed that mine seem to vary
within a few months, yet i constantly do CPT and never skip a
treatment. these are my pft's dating back to November last
year:<br>
<br>
Nov 05 - 75% (my all time low after consistent fev1 of 100+%) I was
in for 7 days of IV's and after that it was 116%<br>
then a few months later - 102%<br>
june 06 - 92%. i was then admitted for another 7 days and it went
up to 107%.<br>
then 2 weeks ago it was 100% <br>
<br>
as you can see my numbers aren't very consistent and even though
after the week of IVs in june it went up, it was still 9% off what
it was only a few months prior. then after the june i.v's it
dropped 7% in less than 2 months.<br>
<br>
my doctor just said that 100% - you can't get much better than
that, although i know that i can and i sort of feel as though i'm
being compared to others too much rather than my individual
PFT's.<br>
<br>
sorry that this turned into a bit of a vent but i was just
wondering everyone's opinions on whether this is normal, as I've
heard the average lung function decline every year is only a few
per cent yet i'm constantly declining more than that.<br>
<br>
sorry this was so long!!! thanks<br>

 

[Jennifer1981]

Hi Mel,

WOW!!!! Great numbers. I am 24 w/CF. My FEV1 is now around the low 80's, and I'm also considered mild CF. I think mine were in the 90's in my teens. You are doing really well. Don't get too discouraged about your numbers. They are great. You're doing all your treatments and medicine. As long as you remain consistent, you'll be alright. You may just be having a little bump in the road. I just got over one. I wasn't in the hospital for 2.5 years, then bang. It happens but everything will work out. I know for me, though, that at that time of the month I get more short of breath and produce more mucus. Also my PFT's are lower. Also in the summer they are lower. I don't handle humidity at all. I try to avoid getting PFT's in summer because my numbers are always down. The rest of the year I'm great. Just something to consider. You'll be fine. Keep up the good work.

Jenny 24 w//CF

 

[NoExcuses]

.

 

[JazzysMom]

There are so many things that can influence your pfts or at least for me. That is why I try to get my appointments as close to the same time of day each appointment as well as try for the same time of the month. Throughout the day things change for me & then throughout the month you have PMS, fatigued etc that all makes a difference. PFTs are so effort dependant that anything that will have an affect on your effort (whether you realize it or not) makes a difference. Now I am not talking DRASTIC changes as with an infection or airway problems, but I am talking enough that its noticeable. This is all with taking care of myself & being healthy. Now if you want to talk non compliance or actually infection well then we all know how that goes......~

 

[LouLou]

Mel if you haven't already you should start to look at the FEV1 number mostly. Are those numbers your FVC or your FEV1?

 

[anonymous]

Mel,

I'm a little new to this, but what I've gotten from the medical types is that within that short of a period (under a year) your percentages tell you a fair bit. If you extend the time frame out into years, your percentage level can change as a result of your getting older or gaining weight. An additional piece of information you can look at to support your understanding is what the actual readings were that the statistics were prepared off of. For example, did your FEV1 go from 4.63 liters to 4.27? That kind of thing...

Also, I'm suprised by the idea that 100% is by itself useful information. Being 100% of an average person doesn't mean much if you're normally 142% of an average person. I was only recently diagnosed with CF, but as part of it, they reviewed some of my PFTs for the last five years or so and were concerned by the fact that I'd dropped from the 130%s to 116%. What I got from them was that an appreciable drop is an appreciable drop, whether it's in the 130s or in the 40s. . .

Additionally, they did tell me that it is possible to remain well over the 100% mark as you get older -- it's not like the ability doesn't exist in one's 20s, 30, 40s and beyond.

 

[tammykrumrey]

Mel,
I just want to compliment you on how mature you sound for being 15 years old! I was comletely impressed when I read your age. It sounds like you are very proactive in your health care, rather than reactive.

 

[chipper28]

Grumble... Grumble.. Grumble...

That was me, I seem incapable of making sure I'm logged in.

Other thought I have is that with me, the guess is that my decrease in lung function is a result of decreased athletic activity. Until I was 18 I had a minimum of 35 hours a week of serious athletic activity. After I quick playing soccer, I was primarily a lump on a log with just a few intermural sports, but then in grad school I started martial arts and was doing at least 17 hours a week of that which helped keep the lung function up. But then, I broke my arm and have really not done anything for two years and so the lung function drop.

I'm currently trying to get myself back to a very full athletic schedule and will see what this does to my pfts!

 

[Ender]

Mine go all over the place....

I get them tested not too often....but here is how the last few were over a 3 year period.

78
73
68
58
89
73 (as of last month)

I dunno, it's bizarre. I think for me I get kinda anxious going in, and so my lungs kinda close up a bit. The one day i got 89, i was really relaxed for some reason, my heart rate was 78, and i felt good. The last time i went in, I was tense, my palms were sweaty, my heart rate was 100....and i just felt tense.

Anyone else feel that the more tense they get, the lower the pfts

 

[Emily65Roses]

Okay, this is just my opinion. I repeat... my opinion:
PFTs are a nice number. They're a good thing to have clinically and a good... base board to jump off of. However, it's not the end-all be-all, contrary to popular belief. A lot of doctors, and even CFers treat it that way. I do not. PFTs are not 100% foolproof. That can change from one PFT machine to the next, one PFT technician to the next. They're a good number to have to have a VERY general idea of where your health is... but... my advice?

Go by how you feel. What you can and can't do that you could or couldn't do the month before. What meds make what difference. How your coughing and mucus has changed. Whether or not you've gained/lost weight. All of that is a lot less conform and you can't just go "well my blah number is 5, so I'm doing well" or whatever. You have to weigh a lot of things against some others, but it's also, in my opinion, a lot more accurate.

Basic answer... PFTs are not as concrete as some people might have you believe. And while they can give you a reasonable account of where you are, it's not unusual to have them fluctuate more than you'd think they should.

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

I dunno, it's bizarre. I think for me I get kinda anxious going in, and so my lungs kinda close up a bit.

</end quote></div>



I don't know how much to just go by how you feel, or if the numbers mark you spot better. I can tell when i'm lower due to not being able to do certain things wihtout getting out of breath.

The whole anxious thing seems pretty big for me lately. I try to relax and stay positive before going in but typically now, I almost choke when I start the breaths in part. It's so annoying and I try to be calm, but I think my insides get nervous so I can't breath in super fast and smoothly - I almost hick-up or something which breaks the big breath in! I think this really effects my numbers overall and yet I can't seem to stop it lately. For this reason I think I can usually do better then the numbers. It's almost like I breath in too fast...weird.

Of course, when you're sick they'll go down a bit and when you're doing better they should go up. So in that case, yes they fluctuate.

I don't think I will ever stop feeling influenced by those "special" numbers. When you do better on them - by all means take in what that higher number is and celebrate. It makes you feel better. If you're truly around 40% or something - you'll never just miraculously pop up to 100%, so they do give you parameters. When they get too low - start looking at how you feel day to day. It's hard to get the low numbers out of your mind though.