Anyone else had this problem?

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ZigZag

New member
hey all, I got a quick question.... (that will lead into a short story)

Does anyone else here ever feel like their PFT's are BSing them, and the doctors really don't seem to know what they're talking about?.....


(here's the reason I ask)
About a month ago I was at the doctors, I went in on a semi emergency basis..... (nurse on the phone told me to)

I was having horrible coughing, and my treatments wern't helping one bit, and it had been happening for a while. So the nurse told me to do my treatments more then usual... So, I did. (Ventaline and Saline, and Pulmozine, or better known as DNA's) Then before I went to do the vest, the bleeding set in. So I couldn't exactly keep up with the treatments, thanks to the bleeding.... (it wouldn't of been a party unless blood showed up!)

So I called the nurse, told her that, and I went to the doctors.
He sent me to do a PFT... So, I did it, then proceeded to wait in his office.
He comes in, and examines me, and looks at my PFT, and tells me that im perfectly fine. He didn't even seem concerned in the least bit.
The nurse sure thought something was wrong, and was obviously concerned, but the doctor didn't seem to.

I'm sitting there, gaging coughing for days straight, with blood, and treatments not helping.... Obviously im fine! *rolls eyes*

So I go home, no new meds or anything, no ideas, just told that im perfectly fine. Which made little to no sense....

That nasty constant coughing went on for about a month, and I have spurts of really bad coughing like that quite often, and they usually last me days at a time (at the very least).

I coulda delt with being told that I was sick and he couldn't really do anything about it, I coulda delt with being hospitalized.... but being sent home with a "perfectly fine", but feeling like I was droping dead....

That really made me mad....
 
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purpleangel28282

New member
I hate PFTs. I don't test well when it comes to them, however I have quite the oppostie reaction. According to mine my lungs work at half of their capacity. However it's very obvious that they work more than half of there capacity. Had only half of my lungs worked I wouldn't be able to even sit down and do nothing without gasping for air. My mom really dislikes PFTs, says you can't really trust them that much, it's better to look at the patient; and in your case obviously you weren't 'fine' and in mine obviously my lungs were working at more than half of their capacity.
 
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Dustin82

New member
I dont like PFT to well there are so many way to do them like u can blow out really hard or u can blow nice and easy. IT is crazy. I like when they look u over listen to your lungs and etc. that makes me feel like the Doctor is doing his job and not just looking at alot of numbers and lines on a piece of paper.
 
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ZigZag

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>purpleangel28282</b></i><br>I hate PFTs. I don't test well when it comes to them, however I have quite the oppostie reaction. According to mine my lungs work at half of their capacity. However it's very obvious that they work more than half of there capacity. Had only half of my lungs worked I wouldn't be able to even sit down and do nothing without gasping for air. My mom really dislikes PFTs, says you can't really trust them that much, it's better to look at the patient; and in your case obviously you weren't 'fine' and in mine obviously my lungs were working at more than half of their capacity.<hr></blockquote>

Ya know, I was told that my lungs we're down to 70% capacity, but I have more stamina then i used to...

Then again, im one of the people that used to not do their meds all the time, and I was told that I had the lost capacity, I belive 2 years ago, back when I lived in Arizona, and there was 0 humidity. Back when breathing was nice and easy, even if I did zero treatments.
I ofcourse do everything im supposed to now that I live in Jersey... (allergies and humidity really mess you up)

If you don't do your stuff all the time, and your docs know about it, then they may be trying to use the scare tactic on you, which seems to be what they did to me. They do it to my other friend with CF too. He's 23, and dosen't do his tobi and vest much either. They try to scare him all the time.

If that's not the case though, then I don't know what your docs are talkin about....
With only 50% capacity, you'd definaily be on oxygen for the rest of your life, or in a wheel chair.
 
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purpleangel28282

New member
I pretty much do my treatments everyday, so I don't know what they're trying to accomplish, maybe they just want me to do more than I already am, who knows. When I do the PFT I always cough at the end and then it totally jacks up the test. You know the sad thing is that one time I was taking it I could tell it was going to be a good test (as could everyone else in the room) because I actually wasn't coughing, but the stupid machine didn't work and it shut down in the middle of it. Ahh well what do ya do, like my mom says when it comes to things like that you have to look at the patient not the numbers (she's a respiratory therapist).
 
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ladybug

New member
Hi!
If anyone wants to start an "I hate PFT's club", please let me know! lol

I hate them! I have major anxiety whenever I do them because I always feel such pressure to do well (both for my own peice of mind and so the docs don't think I'm "sick" when I feel good)... One time, when I had a terrible head and chest cold, I got some of the highest FEV1's I've gotten in 5 years (in the 60's versus 50's)! I don't think they make sense... I also am around 56% FEV1 baseline and I do 40 minutes of vigorous EFX machines at the gym up to 4 times a week! I have NO problem doing that... they don't even make me cough! I also do treatments which I rarely cough from. I would think at half the breathing capacity, I should be getting winded more often, but I don't very often. I would like to think PFT's are a bunch of hooey, but it seems docs are always going to use them as the best measure of CFers health. If I feel really good and my PFT's are crappy, I always try my hardest to convince the docs that I don't feel a bit sick and a tune-up isn't necessary (sometimes this is quite a challenge).

You have to talk to your doctor about how you really feel. I would say if you are coughing that much and it is abnormal for you, regardless of your PFT's, they need to look at the whole picture! I can't believe they aren't talking a closer look. CF is not something you fool around with, in my opinion, as scar tissue (or worse) can form by not treating an infection. Did they culture you? They should look at what you'e culturing as a huge indicator of what's going on inside. My docs always tell me environmental factors call influence PFT's alot, so cultures are often better indicators. Maybe ask them to do a culture if they haven't. Good luck. Let us know how it goes.
(sorry this got so long!)
<img src="i/expressions/sun.gif" border="0">
 
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anonymous

New member
i hate PFT's to! i always cough at the end. sometimes my PFT's are low even though i do my treatments every day! go figure. if im like in the 50's i have to go to the hospital.


tiffany/wcf 14
 
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anonymous

New member
i am with you guys on the idea that PFTs dont tell you everything.....and i think that the docs should look at how the patient is feeling as well!!

but just to let you know my PFTs are around 30% and i am not on oxygen or in a wheelchair. but that doesnt mean my lungs arent bad! it also depends on how well your body can cope with low pfts <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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jenhum

New member
It's a good idea to find a doctor that will treat YOU, not just your numbers. My doc knows that she can trust me to tell her how I am feeling, no matter what my numbers are, and she treats me according to how I feel. Sometimes my numbers are low and I feel just fine, and sometimes I feel like crap but my numbers are normal. Be firm (or ask your parents to be firm) with your doctor and don't leave that office until you get something to help you when you are feeling really bad!!! If your doc refuses, I would absolutely look into getting a new one that listens better!
 
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anonymous

New member
Naomi,

I have less than half my lung capacity left and I still go to work everyday and exercise 5 to 6 days a week. I don't sit on the couch all day and gasp for air.

Dave 29 w/cf
 
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gstvixen

New member
Hi People whose PFT's are under 50% don't need O2 and don't sit in wheelchairs and hack all day!

You start to notice a difference in someone whose PFT's are lower than 20%...my brothers have unfortunatly dropped immensly over the past year or so (and no one can figure out why???) and I noticed a huge change in him when walking down the stairs made him out of breath...now, he is out of breath just sitting and watching tv...he was always so active before playing basketball, working out...its just weird how things happen...............
 
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purpleangel28282

New member
Dave,
Really? Well my mom told me that, maybe she was just over exaggerating or something, to try and prove a point? I don't know, thanks for the info.
 
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anonymous

New member
My FEV1 is currently 30% and I'm able to do the daily things I need to do. I couldn't jog a block without being in bad shape, but I'm also not on oxygen or in a wheelchair either.
At 50% FEV1, I couldn't even tell that I had 50%, I did aerobics, danced, etc, so it's amazing on how little lung function we can survive on. We all are a little different too. I'm betting that someone else out there w/ FEV1 of 30% is on oxygen and having a hard time. It effects us all differently.
I, too hate PFTs, though. Oh well, a part of life---<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
Naomi,

No problem, I figured you were just mis-informed. I hope everybody is getting there exercise, it is very difficult (not impossible) to increase your lung function but with regular exercise you can better maintain what you have, or at the very least you won't decline as quickly.

Dave 29 w/cf
 
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anonymous

New member
My lung capacity went to 38% and I felt like crap but I had an iv treatment and it went back up. Not much but it went up to 41% and I feel back to normal still off work because they won't allow me to work till my lungs get to 50%. I'm very surprised at you all that are working with your capacity that low. I was told by 3 dr's (not in the same office) that the state doesn't allow it. I live in Mich. Eva 35w/cf diagnost at 30.
 
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anonymous

New member
that isnt true fyi. it isnt your PFTs that determine whether you need oxygen, but your sats. although its true that someone with a lung function of 30% MAY be more likely to need O2 than someone with lung function of 50%!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> (i went in with a pretty grim one of 17% the other week and i still wasnt on oxygen!!)
 
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anonymous

New member
I thank you for putting that in to perspective for me. I'm so glad we all have an opportunity to learn from each other. It's amazing what I have learned by reading everyone's stories. Since I found out at 30 it has been an extremely rough 5 years. Most of what I learned was on the computer. So I take my questions to my cf dr. But since we dont see them only every couple months, ther's so much hope from learning from each other. How do you feel? and how old are you if you don't mind me asking? I dont mean to ask so many questions. I appoligize but I'm amazed. You truly must be a miracle. I believe we are put here for a reason. Thanks! Sheri
 
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