where the heck did these numbers come from?

rubyroselee

New member
Hi everyone,

Before I start, let me backtrack a little. In my teens and early twenties, my FEV1 hovered around 70-75%. I could count on it dipping down into the 60's when I wasn't feeling well. I never ever thought I'd see a day when I would hit 80%. But then, by some miracle about 5 years ago, I hit 81% and I could not believe my eyes! Over the past 5 years, I have slowly crept upwards from 85%, to 90%, to 95%, and even to 100%. So now my new baseline (which is amazing to me) is about 95%.

I had a regular clinic appointment a month ago and the doctor found a bit of mucus plugging in my lower left lobe on x-ray along with the doctor hearing a lot of junk down there. My PFT's were not affected at all during that appointment (FEV1 was 96%), but he told me to increase Pulmozyme to 2x/day and add some manual CPT to that area. So I did.

I had a follow-up to that appointment yesterday. I was pretty worried because I have a head cold a cough from the drainage. I was thinking I would be lucky if I was at my baseline. But to my complete surprise, I blew a 114%! WHAT?!?!?!?!

Could this measurement really be real? Has anyone ever had a dramatic increase like that? Sometimes I wonder if the machines are really accurate at my clinic. I guess I feel really good except for the head cold, so maybe it really is true. But goodness! I would have never expected those numbers. I am just worried that the machinery is not calibrated correctly, even though they confirmed that it was twice. I thought that the damage was already done when my PFT's were in the 60's and 70's.

Secondly, he said I have a new bacteria...but I can't remember the name of it. Can anyone give me some names of CF bugs that are somewhat common? I think if I saw the name I would know what it was. It was a name that I've heard of before, it's pretty common in CF, but it's not as common as staph or pseudomonas. Thanks.
 

rubyroselee

New member
Hi everyone,

Before I start, let me backtrack a little. In my teens and early twenties, my FEV1 hovered around 70-75%. I could count on it dipping down into the 60's when I wasn't feeling well. I never ever thought I'd see a day when I would hit 80%. But then, by some miracle about 5 years ago, I hit 81% and I could not believe my eyes! Over the past 5 years, I have slowly crept upwards from 85%, to 90%, to 95%, and even to 100%. So now my new baseline (which is amazing to me) is about 95%.

I had a regular clinic appointment a month ago and the doctor found a bit of mucus plugging in my lower left lobe on x-ray along with the doctor hearing a lot of junk down there. My PFT's were not affected at all during that appointment (FEV1 was 96%), but he told me to increase Pulmozyme to 2x/day and add some manual CPT to that area. So I did.

I had a follow-up to that appointment yesterday. I was pretty worried because I have a head cold a cough from the drainage. I was thinking I would be lucky if I was at my baseline. But to my complete surprise, I blew a 114%! WHAT?!?!?!?!

Could this measurement really be real? Has anyone ever had a dramatic increase like that? Sometimes I wonder if the machines are really accurate at my clinic. I guess I feel really good except for the head cold, so maybe it really is true. But goodness! I would have never expected those numbers. I am just worried that the machinery is not calibrated correctly, even though they confirmed that it was twice. I thought that the damage was already done when my PFT's were in the 60's and 70's.

Secondly, he said I have a new bacteria...but I can't remember the name of it. Can anyone give me some names of CF bugs that are somewhat common? I think if I saw the name I would know what it was. It was a name that I've heard of before, it's pretty common in CF, but it's not as common as staph or pseudomonas. Thanks.
 

rubyroselee

New member
Hi everyone,

Before I start, let me backtrack a little. In my teens and early twenties, my FEV1 hovered around 70-75%. I could count on it dipping down into the 60's when I wasn't feeling well. I never ever thought I'd see a day when I would hit 80%. But then, by some miracle about 5 years ago, I hit 81% and I could not believe my eyes! Over the past 5 years, I have slowly crept upwards from 85%, to 90%, to 95%, and even to 100%. So now my new baseline (which is amazing to me) is about 95%.

I had a regular clinic appointment a month ago and the doctor found a bit of mucus plugging in my lower left lobe on x-ray along with the doctor hearing a lot of junk down there. My PFT's were not affected at all during that appointment (FEV1 was 96%), but he told me to increase Pulmozyme to 2x/day and add some manual CPT to that area. So I did.

I had a follow-up to that appointment yesterday. I was pretty worried because I have a head cold a cough from the drainage. I was thinking I would be lucky if I was at my baseline. But to my complete surprise, I blew a 114%! WHAT?!?!?!?!

Could this measurement really be real? Has anyone ever had a dramatic increase like that? Sometimes I wonder if the machines are really accurate at my clinic. I guess I feel really good except for the head cold, so maybe it really is true. But goodness! I would have never expected those numbers. I am just worried that the machinery is not calibrated correctly, even though they confirmed that it was twice. I thought that the damage was already done when my PFT's were in the 60's and 70's.

Secondly, he said I have a new bacteria...but I can't remember the name of it. Can anyone give me some names of CF bugs that are somewhat common? I think if I saw the name I would know what it was. It was a name that I've heard of before, it's pretty common in CF, but it's not as common as staph or pseudomonas. Thanks.
 

rubyroselee

New member
Hi everyone,

Before I start, let me backtrack a little. In my teens and early twenties, my FEV1 hovered around 70-75%. I could count on it dipping down into the 60's when I wasn't feeling well. I never ever thought I'd see a day when I would hit 80%. But then, by some miracle about 5 years ago, I hit 81% and I could not believe my eyes! Over the past 5 years, I have slowly crept upwards from 85%, to 90%, to 95%, and even to 100%. So now my new baseline (which is amazing to me) is about 95%.

I had a regular clinic appointment a month ago and the doctor found a bit of mucus plugging in my lower left lobe on x-ray along with the doctor hearing a lot of junk down there. My PFT's were not affected at all during that appointment (FEV1 was 96%), but he told me to increase Pulmozyme to 2x/day and add some manual CPT to that area. So I did.

I had a follow-up to that appointment yesterday. I was pretty worried because I have a head cold a cough from the drainage. I was thinking I would be lucky if I was at my baseline. But to my complete surprise, I blew a 114%! WHAT?!?!?!?!

Could this measurement really be real? Has anyone ever had a dramatic increase like that? Sometimes I wonder if the machines are really accurate at my clinic. I guess I feel really good except for the head cold, so maybe it really is true. But goodness! I would have never expected those numbers. I am just worried that the machinery is not calibrated correctly, even though they confirmed that it was twice. I thought that the damage was already done when my PFT's were in the 60's and 70's.

Secondly, he said I have a new bacteria...but I can't remember the name of it. Can anyone give me some names of CF bugs that are somewhat common? I think if I saw the name I would know what it was. It was a name that I've heard of before, it's pretty common in CF, but it's not as common as staph or pseudomonas. Thanks.
 

rubyroselee

New member
Hi everyone,
<br />
<br />Before I start, let me backtrack a little. In my teens and early twenties, my FEV1 hovered around 70-75%. I could count on it dipping down into the 60's when I wasn't feeling well. I never ever thought I'd see a day when I would hit 80%. But then, by some miracle about 5 years ago, I hit 81% and I could not believe my eyes! Over the past 5 years, I have slowly crept upwards from 85%, to 90%, to 95%, and even to 100%. So now my new baseline (which is amazing to me) is about 95%.
<br />
<br />I had a regular clinic appointment a month ago and the doctor found a bit of mucus plugging in my lower left lobe on x-ray along with the doctor hearing a lot of junk down there. My PFT's were not affected at all during that appointment (FEV1 was 96%), but he told me to increase Pulmozyme to 2x/day and add some manual CPT to that area. So I did.
<br />
<br />I had a follow-up to that appointment yesterday. I was pretty worried because I have a head cold a cough from the drainage. I was thinking I would be lucky if I was at my baseline. But to my complete surprise, I blew a 114%! WHAT?!?!?!?!
<br />
<br />Could this measurement really be real? Has anyone ever had a dramatic increase like that? Sometimes I wonder if the machines are really accurate at my clinic. I guess I feel really good except for the head cold, so maybe it really is true. But goodness! I would have never expected those numbers. I am just worried that the machinery is not calibrated correctly, even though they confirmed that it was twice. I thought that the damage was already done when my PFT's were in the 60's and 70's.
<br />
<br />Secondly, he said I have a new bacteria...but I can't remember the name of it. Can anyone give me some names of CF bugs that are somewhat common? I think if I saw the name I would know what it was. It was a name that I've heard of before, it's pretty common in CF, but it's not as common as staph or pseudomonas. Thanks.
 

Jeana

New member
Wow! Congrats to you for the high FEV1! What have you been doing to get such great results that you weren't doing earlier in life? Pulmozyme? Exercise? Drug studies? Could the bug be Cepacia?
 

Jeana

New member
Wow! Congrats to you for the high FEV1! What have you been doing to get such great results that you weren't doing earlier in life? Pulmozyme? Exercise? Drug studies? Could the bug be Cepacia?
 

Jeana

New member
Wow! Congrats to you for the high FEV1! What have you been doing to get such great results that you weren't doing earlier in life? Pulmozyme? Exercise? Drug studies? Could the bug be Cepacia?
 

Jeana

New member
Wow! Congrats to you for the high FEV1! What have you been doing to get such great results that you weren't doing earlier in life? Pulmozyme? Exercise? Drug studies? Could the bug be Cepacia?
 

Jeana

New member
Wow! Congrats to you for the high FEV1! What have you been doing to get such great results that you weren't doing earlier in life? Pulmozyme? Exercise? Drug studies? Could the bug be Cepacia?
 

beleache

New member
Wow Leah! Wonderful !!

I guess i would give a quick call to the drs. office and ask the PA what bug you are culturing now so you will know for yourself..

Keep up the good work !! <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Wow Leah! Wonderful !!

I guess i would give a quick call to the drs. office and ask the PA what bug you are culturing now so you will know for yourself..

Keep up the good work !! <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Wow Leah! Wonderful !!

I guess i would give a quick call to the drs. office and ask the PA what bug you are culturing now so you will know for yourself..

Keep up the good work !! <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Wow Leah! Wonderful !!

I guess i would give a quick call to the drs. office and ask the PA what bug you are culturing now so you will know for yourself..

Keep up the good work !! <img src="i/expressions/heart.gif" border="0"> joni
 

beleache

New member
Wow Leah! Wonderful !!
<br />
<br /> I guess i would give a quick call to the drs. office and ask the PA what bug you are culturing now so you will know for yourself..
<br />
<br /> Keep up the good work !! <img src="i/expressions/heart.gif" border="0"> joni
 
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