Disappointing news from the doc.

C

chantelfox

New member
Hey all. OK so Monday I went to the Dr. for a check-up. My PFTs are
pretty much the same as before I had a clean-out in july. So I said
to my doctor that many people talk about 30% being pretty
standard for being considered for a lung transplant and I asked
him which number was the one the doctors look at for how well
a person is doing. ALL THIS TIME I thought it was <b><i>your
lung capacity</i></b> that was the number that was looked at (mine
is high 70%'s) (I forget the correct terminology for the different
measurements), but he tells me the number that they look at for
lung transplants is <b><i>how fast you can blow out in one
second</i></b> (which mine is at 53%). That stinks .  All this
time I thought I was doing really good for my age. Now come to find
out I am not so good. I am so disappointed. All I have been
thinking about is how much closer to the end I am than I thought I
was.<br>
<br>
Did everyone else know which number matters when it comes to lung
transplants and what the "important" number is? Is it bad
or average to be where I am at (53%) at 25 years old?<br>
<br>
Thanks for your responses.
 
C

chantelfox

New member
Hey all. OK so Monday I went to the Dr. for a check-up. My PFTs are
pretty much the same as before I had a clean-out in july. So I said
to my doctor that many people talk about 30% being pretty
standard for being considered for a lung transplant and I asked
him which number was the one the doctors look at for how well
a person is doing. ALL THIS TIME I thought it was <b><i>your
lung capacity</i></b> that was the number that was looked at (mine
is high 70%'s) (I forget the correct terminology for the different
measurements), but he tells me the number that they look at for
lung transplants is <b><i>how fast you can blow out in one
second</i></b> (which mine is at 53%). That stinks .  All this
time I thought I was doing really good for my age. Now come to find
out I am not so good. I am so disappointed. All I have been
thinking about is how much closer to the end I am than I thought I
was.<br>
<br>
Did everyone else know which number matters when it comes to lung
transplants and what the "important" number is? Is it bad
or average to be where I am at (53%) at 25 years old?<br>
<br>
Thanks for your responses.
 
C

chantelfox

New member
Hey all. OK so Monday I went to the Dr. for a check-up. My PFTs are
pretty much the same as before I had a clean-out in july. So I said
to my doctor that many people talk about 30% being pretty
standard for being considered for a lung transplant and I asked
him which number was the one the doctors look at for how well
a person is doing. ALL THIS TIME I thought it was <b><i>your
lung capacity</i></b> that was the number that was looked at (mine
is high 70%'s) (I forget the correct terminology for the different
measurements), but he tells me the number that they look at for
lung transplants is <b><i>how fast you can blow out in one
second</i></b> (which mine is at 53%). That stinks .  All this
time I thought I was doing really good for my age. Now come to find
out I am not so good. I am so disappointed. All I have been
thinking about is how much closer to the end I am than I thought I
was.<br>
<br>
Did everyone else know which number matters when it comes to lung
transplants and what the "important" number is? Is it bad
or average to be where I am at (53%) at 25 years old?<br>
<br>
Thanks for your responses.
 
K

kybert

New member
its average. dont stress about it. half the time percentages dont judge how well someone really is anyway. someone could run a marathom at 53% while another could have trouble just walking at the same percentage.
 
K

kybert

New member
its average. dont stress about it. half the time percentages dont judge how well someone really is anyway. someone could run a marathom at 53% while another could have trouble just walking at the same percentage.
 
K

kybert

New member
its average. dont stress about it. half the time percentages dont judge how well someone really is anyway. someone could run a marathom at 53% while another could have trouble just walking at the same percentage.
 
S

Scarlett81

New member
it's not unusual Chantel-I thought the same thing once! I'm just saying, don't feel silly. If it wasn't explained to you correctly or thoroughly enough its not your fault.
Actually, understanding my pfts correctly is what originally motivated me to take better care of myself. That sounds so funny to say now, but its true.
 
S

Scarlett81

New member
it's not unusual Chantel-I thought the same thing once! I'm just saying, don't feel silly. If it wasn't explained to you correctly or thoroughly enough its not your fault.
Actually, understanding my pfts correctly is what originally motivated me to take better care of myself. That sounds so funny to say now, but its true.
 
S

Scarlett81

New member
it's not unusual Chantel-I thought the same thing once! I'm just saying, don't feel silly. If it wasn't explained to you correctly or thoroughly enough its not your fault.
Actually, understanding my pfts correctly is what originally motivated me to take better care of myself. That sounds so funny to say now, but its true.
 
C

coltsfan715

New member
Hey Chantel,

If it makes you feel any better I know the position you are in pretty much exactly. My old doc had been telling me for the past year or two that my PFTs were at about 40-45% and had also told me I am not in need of being evaluated for transplant at this point. Come to find out I go to this new doc and they get my PFTs from my last doc and my old doc had been misleading me and giving me the wrong numbers from my PFTs. My FEV1 (the important number) has been at about 30-33% for the past year or more. I was stunned. I was pissed, disappointed and felt like I had all the air ripped out of my lungs (literally).

I had to get past the mental part of it because I realized that I had been functioning like that for so long and I have been okay - so now I just need to build back up to 40% then hopefully higher with exercising and so on. My new docs have recommended that if I am interested in transplant that I go ahead and get evaluated in the even that I am not able to pull up my PFTs. So yeah sometimes it hapens and you aren't the only one to think you are functioning at 1 level only to find out it is something else.

Take Care,
Lindsey
 
C

coltsfan715

New member
Hey Chantel,

If it makes you feel any better I know the position you are in pretty much exactly. My old doc had been telling me for the past year or two that my PFTs were at about 40-45% and had also told me I am not in need of being evaluated for transplant at this point. Come to find out I go to this new doc and they get my PFTs from my last doc and my old doc had been misleading me and giving me the wrong numbers from my PFTs. My FEV1 (the important number) has been at about 30-33% for the past year or more. I was stunned. I was pissed, disappointed and felt like I had all the air ripped out of my lungs (literally).

I had to get past the mental part of it because I realized that I had been functioning like that for so long and I have been okay - so now I just need to build back up to 40% then hopefully higher with exercising and so on. My new docs have recommended that if I am interested in transplant that I go ahead and get evaluated in the even that I am not able to pull up my PFTs. So yeah sometimes it hapens and you aren't the only one to think you are functioning at 1 level only to find out it is something else.

Take Care,
Lindsey
 
C

coltsfan715

New member
Hey Chantel,

If it makes you feel any better I know the position you are in pretty much exactly. My old doc had been telling me for the past year or two that my PFTs were at about 40-45% and had also told me I am not in need of being evaluated for transplant at this point. Come to find out I go to this new doc and they get my PFTs from my last doc and my old doc had been misleading me and giving me the wrong numbers from my PFTs. My FEV1 (the important number) has been at about 30-33% for the past year or more. I was stunned. I was pissed, disappointed and felt like I had all the air ripped out of my lungs (literally).

I had to get past the mental part of it because I realized that I had been functioning like that for so long and I have been okay - so now I just need to build back up to 40% then hopefully higher with exercising and so on. My new docs have recommended that if I am interested in transplant that I go ahead and get evaluated in the even that I am not able to pull up my PFTs. So yeah sometimes it hapens and you aren't the only one to think you are functioning at 1 level only to find out it is something else.

Take Care,
Lindsey
 
P

princessjdc

New member
Dont feel bad you can always bring them up. I knew which one they looked at, but I can see how it can be confusing, because there is soo many numbers.
 
P

princessjdc

New member
Dont feel bad you can always bring them up. I knew which one they looked at, but I can see how it can be confusing, because there is soo many numbers.
 
P

princessjdc

New member
Dont feel bad you can always bring them up. I knew which one they looked at, but I can see how it can be confusing, because there is soo many numbers.
 
L

Landy

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

ALL THIS TIME I thought it was <b><i>your
lung capacity</i></b> that was the number that was looked at (mine
is high 70%'s) </end quote></div>

This may sound silly, but how do you know what your lung capacity is?

Aren't PFT's used to determine degrees of restriction, obstruction, etc.
For example, if my FEV1 is 40% does that mean my lung capacity is 40% or just that I can only blow out 40% of what is predicted for females of my age/weight. What if I'm 'not doing it right' when I do PFT's, then this would be a misleading number.
Would something like a CT Scan determine what your lung capacity is & PFT determine what your lung function is or are these 2 terms one in the same?
See...I told you this may sound silly.
 
L

Landy

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

ALL THIS TIME I thought it was <b><i>your
lung capacity</i></b> that was the number that was looked at (mine
is high 70%'s) </end quote></div>

This may sound silly, but how do you know what your lung capacity is?

Aren't PFT's used to determine degrees of restriction, obstruction, etc.
For example, if my FEV1 is 40% does that mean my lung capacity is 40% or just that I can only blow out 40% of what is predicted for females of my age/weight. What if I'm 'not doing it right' when I do PFT's, then this would be a misleading number.
Would something like a CT Scan determine what your lung capacity is & PFT determine what your lung function is or are these 2 terms one in the same?
See...I told you this may sound silly.
 
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