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Need help with PFTS

J

JennifersHope

New member
Hey Guys,

I was wondering if you have any advice on getting PFTS up.. My lung function is still down quite a bit since my horrible hospital stay.... I am doing all my treatments... I am now on three antibiotics.. I don't really feel sick, just tired from my job.. but every ounce of tiredness is worth it to be able to be normal and work in my dream job.....

I can't get my numbers up, they haven't 'been down for this long ever...

What have you done that works for you guys.?

Thanks so much

Jennifer
 
J

JennifersHope

New member
Hey Guys,

I was wondering if you have any advice on getting PFTS up.. My lung function is still down quite a bit since my horrible hospital stay.... I am doing all my treatments... I am now on three antibiotics.. I don't really feel sick, just tired from my job.. but every ounce of tiredness is worth it to be able to be normal and work in my dream job.....

I can't get my numbers up, they haven't 'been down for this long ever...

What have you done that works for you guys.?

Thanks so much

Jennifer
 
J

JennifersHope

New member
Hey Guys,

I was wondering if you have any advice on getting PFTS up.. My lung function is still down quite a bit since my horrible hospital stay.... I am doing all my treatments... I am now on three antibiotics.. I don't really feel sick, just tired from my job.. but every ounce of tiredness is worth it to be able to be normal and work in my dream job.....

I can't get my numbers up, they haven't 'been down for this long ever...

What have you done that works for you guys.?

Thanks so much

Jennifer
 
P

princessjdc

New member
Hypertonic Saline has worked for me it got my pfts up from 65 to 89 and February will be my 1 year mark for taking hypertonic saline, so everytime I went to the docs they had always gone up except last time they dropped 1% and I think its because I ran out HS before I got more.
 
P

princessjdc

New member
Hypertonic Saline has worked for me it got my pfts up from 65 to 89 and February will be my 1 year mark for taking hypertonic saline, so everytime I went to the docs they had always gone up except last time they dropped 1% and I think its because I ran out HS before I got more.
 
P

princessjdc

New member
Hypertonic Saline has worked for me it got my pfts up from 65 to 89 and February will be my 1 year mark for taking hypertonic saline, so everytime I went to the docs they had always gone up except last time they dropped 1% and I think its because I ran out HS before I got more.
 
O

onlyoneloveinmylife

New member
Jennifer, i was having the same problem last year after my 2 hosp. stays.
i just wasn't getting any better and my numbers wouldn't come up. come to find out it was the Tobi that was the making my #'s stay so low. so after going off Tobi i slowly started to get better. is there any chance this might be happening to you?

just thought that might be the problem. if not tobi maybe some other medicine might be the problem. maybe talk to your DR.? might get lucky like i did.

good luck, praying for you.
 
O

onlyoneloveinmylife

New member
Jennifer, i was having the same problem last year after my 2 hosp. stays.
i just wasn't getting any better and my numbers wouldn't come up. come to find out it was the Tobi that was the making my #'s stay so low. so after going off Tobi i slowly started to get better. is there any chance this might be happening to you?

just thought that might be the problem. if not tobi maybe some other medicine might be the problem. maybe talk to your DR.? might get lucky like i did.

good luck, praying for you.
 
O

onlyoneloveinmylife

New member
Jennifer, i was having the same problem last year after my 2 hosp. stays.
i just wasn't getting any better and my numbers wouldn't come up. come to find out it was the Tobi that was the making my #'s stay so low. so after going off Tobi i slowly started to get better. is there any chance this might be happening to you?

just thought that might be the problem. if not tobi maybe some other medicine might be the problem. maybe talk to your DR.? might get lucky like i did.

good luck, praying for you.
 
C

CowTown

New member
Are you working out? I think consistent exercise is one of the best ways to try and get them up. And like Tom said, making sure you're on the right med for the job.

Good Luck.
 
C

CowTown

New member
Are you working out? I think consistent exercise is one of the best ways to try and get them up. And like Tom said, making sure you're on the right med for the job.

Good Luck.
 
C

CowTown

New member
Are you working out? I think consistent exercise is one of the best ways to try and get them up. And like Tom said, making sure you're on the right med for the job.

Good Luck.
 
N

NoExcuses

New member
1. Exercise can help. But only so much. You're not going to go up 20 points just by exercising.

2. Antibiotics will help. Knowing the nature of CF, your airways, if your lungs are fighting infection, are full of dead white blood cells aka inflammation and sputum. as soon as your body stops sending the troops to the site of the infection, the inflammation will go down and lungs will function better.

3. If you're going to be hell-bent on working even though your body isn't 100% up to speed, you're going to pay the price in lung function. That's the reality whether you like it or not. Trust me, I'm all for the dream job. I have mine as well and I've paid my price with my CF as well. So take as a comment from someone who is very similar to you in work ethic and passion. But if you don't take time out to deal with infections and get enough rest, your lungs will take longer to bounce back and may not bounce back all the way.

4. This is a progressive disease. Whether you're 3 years old, 30 years old, or 60 years old. Not everyone gets their lung function back after an infection. Most get some of it back, some get it all, and everywhere in between. I know you know that but I feel that some people who haven't had much CF lung involvement have the impression that their lungs will always bounce back.


Keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
1. Exercise can help. But only so much. You're not going to go up 20 points just by exercising.

2. Antibiotics will help. Knowing the nature of CF, your airways, if your lungs are fighting infection, are full of dead white blood cells aka inflammation and sputum. as soon as your body stops sending the troops to the site of the infection, the inflammation will go down and lungs will function better.

3. If you're going to be hell-bent on working even though your body isn't 100% up to speed, you're going to pay the price in lung function. That's the reality whether you like it or not. Trust me, I'm all for the dream job. I have mine as well and I've paid my price with my CF as well. So take as a comment from someone who is very similar to you in work ethic and passion. But if you don't take time out to deal with infections and get enough rest, your lungs will take longer to bounce back and may not bounce back all the way.

4. This is a progressive disease. Whether you're 3 years old, 30 years old, or 60 years old. Not everyone gets their lung function back after an infection. Most get some of it back, some get it all, and everywhere in between. I know you know that but I feel that some people who haven't had much CF lung involvement have the impression that their lungs will always bounce back.


Keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
1. Exercise can help. But only so much. You're not going to go up 20 points just by exercising.

2. Antibiotics will help. Knowing the nature of CF, your airways, if your lungs are fighting infection, are full of dead white blood cells aka inflammation and sputum. as soon as your body stops sending the troops to the site of the infection, the inflammation will go down and lungs will function better.

3. If you're going to be hell-bent on working even though your body isn't 100% up to speed, you're going to pay the price in lung function. That's the reality whether you like it or not. Trust me, I'm all for the dream job. I have mine as well and I've paid my price with my CF as well. So take as a comment from someone who is very similar to you in work ethic and passion. But if you don't take time out to deal with infections and get enough rest, your lungs will take longer to bounce back and may not bounce back all the way.

4. This is a progressive disease. Whether you're 3 years old, 30 years old, or 60 years old. Not everyone gets their lung function back after an infection. Most get some of it back, some get it all, and everywhere in between. I know you know that but I feel that some people who haven't had much CF lung involvement have the impression that their lungs will always bounce back.


Keep us posted <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JazzysMom

New member
Jenn....didnt you say that your steroids are cut back? That alone can make a big difference. I thought one of the reasons that your lungs stayed pretty good was because of the steroids for all the other stuff. Your body has been thru a lot & the fact that you are tired from being back to work has much to do with it. No real answers for you since it could be a few things at the moment..
 
J

JazzysMom

New member
Jenn....didnt you say that your steroids are cut back? That alone can make a big difference. I thought one of the reasons that your lungs stayed pretty good was because of the steroids for all the other stuff. Your body has been thru a lot & the fact that you are tired from being back to work has much to do with it. No real answers for you since it could be a few things at the moment..
 
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