do you ever get better on your own?

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JennyCoulon

New member
It might be an inconveinence to go in now but unfortunely CF is an inconveinence. I wouldn't accept that this is your new baseline. I would go in now and when they are checking your PFT's if the number isn't better I would then voice my concerns at that time as to this being the reason you didn't want to be admitted in the first place. You would really hate to wait and then have it get much worse and have you in for longer. Hope this helps....I know it is difficult to put all of your life on hold to deal with your CF but it is a necessity if you want to continue to be able to live a long, healthy (as much as it can be) life. Good luck.
 
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JennyCoulon

New member
It might be an inconveinence to go in now but unfortunely CF is an inconveinence. I wouldn't accept that this is your new baseline. I would go in now and when they are checking your PFT's if the number isn't better I would then voice my concerns at that time as to this being the reason you didn't want to be admitted in the first place. You would really hate to wait and then have it get much worse and have you in for longer. Hope this helps....I know it is difficult to put all of your life on hold to deal with your CF but it is a necessity if you want to continue to be able to live a long, healthy (as much as it can be) life. Good luck.
 
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Iamqueenofeverything

New member
go in the hospital. if you don't care of your health then you may run the risk of doing damage to your health or lungs in the future. i know it is a pain. i have been in the hospital 2 times in the last four months. so i feel your struggle of putting cf on hold. you can make a better impression on college interviews when you feel better and not coughing alot.
 
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Iamqueenofeverything

New member
go in the hospital. if you don't care of your health then you may run the risk of doing damage to your health or lungs in the future. i know it is a pain. i have been in the hospital 2 times in the last four months. so i feel your struggle of putting cf on hold. you can make a better impression on college interviews when you feel better and not coughing alot.
 
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Cbegley

New member
I haven't read any one else's responses yet, but please don't do that. My husband has done this before-putting it off thinking he can get better and it just gets worse which = more damage and suffering. We are all human and it is natural to get sick and it is OKAY so accept that you get sick more often, the best thing you can do for yourself is that if you start feeling bad, go to the hospital immediately. There is nothing bad that can come out of that, and you can catch things earlier and get better faster. Please take care!
 
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Cbegley

New member
I haven't read any one else's responses yet, but please don't do that. My husband has done this before-putting it off thinking he can get better and it just gets worse which = more damage and suffering. We are all human and it is natural to get sick and it is OKAY so accept that you get sick more often, the best thing you can do for yourself is that if you start feeling bad, go to the hospital immediately. There is nothing bad that can come out of that, and you can catch things earlier and get better faster. Please take care!
 
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mamaScarlett

Active member
All I can add is that you need to think long term, not short term. In the short term, you'll miss school, exams, and some important things for sure. But in the long term, you may be contributing to missing out on even more.
I am 29, with 2 kids. My pfts are between 65-70. As my doctor says-even one point is important! And you need that one point as soon as you can get it.
Please DO NOT accept that this is your new baseline! NO WAY-you are young! You have years ahead of you! You want a career, to marry, maybe raise kids...no way is this your baseline girl. Get your butt back in there and fight, come out stronger, so you can enjoy graduation and ALL that the future holds for you.
 
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mamaScarlett

Active member
All I can add is that you need to think long term, not short term. In the short term, you'll miss school, exams, and some important things for sure. But in the long term, you may be contributing to missing out on even more.
I am 29, with 2 kids. My pfts are between 65-70. As my doctor says-even one point is important! And you need that one point as soon as you can get it.
Please DO NOT accept that this is your new baseline! NO WAY-you are young! You have years ahead of you! You want a career, to marry, maybe raise kids...no way is this your baseline girl. Get your butt back in there and fight, come out stronger, so you can enjoy graduation and ALL that the future holds for you.
 
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Incomudrox

New member
I would like to reiterate more on the "don't accept this baseline". It's said that unless you have been at this so called "base line" for more than a year it's not lost! lung function can come back if you are willing to do what it takes! You can still get back that lung function do NOT let it go! The most likely reason you have failed to get it back thus far is you have a bug that is not being treated. But if you don't give the doctors a chance to treat it how can you have a chance to get rid of it? Whether you like it or not CF is a part of your life. There is always time for school later! Sure you can push through it and lose a bunch of lung function.

Then when you graduate with 50% FEV1 you work for 3 years until your lung function is in the 30s or possibly lower and you have to stop working, mean while you have a mountain of student debt, and other debt and your life comes crashing down on you harder than you ever thought possible. You think going to the hospital now is bad, that scenario is much worse.

Schools MUST work with you. Don't think that you can't get help because your lung function is not in the shitter completely because you can! Do to the disabilities office when you get to college and get setup. Through college it would be advisable to go for IV antibiotics regardless of needing them or not at the end of every semester it WILL be your best option it's shitty but you will live longer and be better off when you graduate school.
 
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Incomudrox

New member
I would like to reiterate more on the "don't accept this baseline". It's said that unless you have been at this so called "base line" for more than a year it's not lost! lung function can come back if you are willing to do what it takes! You can still get back that lung function do NOT let it go! The most likely reason you have failed to get it back thus far is you have a bug that is not being treated. But if you don't give the doctors a chance to treat it how can you have a chance to get rid of it? Whether you like it or not CF is a part of your life. There is always time for school later! Sure you can push through it and lose a bunch of lung function.

Then when you graduate with 50% FEV1 you work for 3 years until your lung function is in the 30s or possibly lower and you have to stop working, mean while you have a mountain of student debt, and other debt and your life comes crashing down on you harder than you ever thought possible. You think going to the hospital now is bad, that scenario is much worse.

Schools MUST work with you. Don't think that you can't get help because your lung function is not in the shitter completely because you can! Do to the disabilities office when you get to college and get setup. Through college it would be advisable to go for IV antibiotics regardless of needing them or not at the end of every semester it WILL be your best option it's shitty but you will live longer and be better off when you graduate school.
 
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JENNYC

New member
What about home IV? My daughter usually goes in just long enough to get her IV meds to the level they would like them..and then we get to go home with a pic line and home IV therapy. I agree with everyone else...don't jeopardize your health for school. School will be there when you get back to your baseline. Ask your docs about the home IV therapy. My little one is 6 and they told me she could go to school on the IV meds(of course I didn't let her because it just didn't sound look a good idea letting me 6 year old keep calm and in check while running with 100 other little 6 year olds with germs.) But you are older and know how to take care of yourself. Just a thought.
 
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JENNYC

New member
What about home IV? My daughter usually goes in just long enough to get her IV meds to the level they would like them..and then we get to go home with a pic line and home IV therapy. I agree with everyone else...don't jeopardize your health for school. School will be there when you get back to your baseline. Ask your docs about the home IV therapy. My little one is 6 and they told me she could go to school on the IV meds(of course I didn't let her because it just didn't sound look a good idea letting me 6 year old keep calm and in check while running with 100 other little 6 year olds with germs.) But you are older and know how to take care of yourself. Just a thought.
 
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rainsmom

Guest
is it an option to do ivs at home for you? my daughter is 16 and we have done them at home. she actually did awsome at home. gained weight and everything. she did it during school. we worked her meds around school hrs.
 
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rainsmom

Guest
is it an option to do ivs at home for you? my daughter is 16 and we have done them at home. she actually did awsome at home. gained weight and everything. she did it during school. we worked her meds around school hrs.
 
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rainsmom

Guest
AND Please do not accept that as your new baseline!!! My daughter Rain's dropped from 90s to mid 70's we did 3 wks ivs and got them to 85 the first week of ivsand that was the best they would come up but from august to march of the next year they were back up to 91!! and we havent done this yet but they have those little iv balls (not sure what they are called) but they would be awsome to use if you are in school. no iv pole or anything. i have a friend that uses one and she just popped at a needle and inserted it into the ball at a restraunt table. easy. I know school is important to you so try to work around it but your lungs are your most important issue!! good luck and I will say a prayer for you.
 
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rainsmom

Guest
AND Please do not accept that as your new baseline!!! My daughter Rain's dropped from 90s to mid 70's we did 3 wks ivs and got them to 85 the first week of ivsand that was the best they would come up but from august to march of the next year they were back up to 91!! and we havent done this yet but they have those little iv balls (not sure what they are called) but they would be awsome to use if you are in school. no iv pole or anything. i have a friend that uses one and she just popped at a needle and inserted it into the ball at a restraunt table. easy. I know school is important to you so try to work around it but your lungs are your most important issue!! good luck and I will say a prayer for you.
 
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JustDucky

New member
Sasha,
Been thinking of you....wondering how you are doing and what you finally decided. Keeping you in my thoughts and prayers.
Jenn 40 w/CF
 
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JustDucky

New member
Sasha,
Been thinking of you....wondering how you are doing and what you finally decided. Keeping you in my thoughts and prayers.
Jenn 40 w/CF
 
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ryry11

New member
Hi Sasha.
I'm 19. I went away to college this year, knowing I was sick. Hospitalization wasn't offered to me, but I knew in the back of my mind that I should really be hospitalized. I did all my meds, everything, but in mid-October, I started coughing up blood, and was admitted the next afternoon. Trust me. It really, really, really sucks. I'm not going to pretend it doesn't suck. It screws up school, it screws up your social life, it makes you miserable...but it's so completely worth it. I spent 2 weeks in the hospital, and my PFTs were back to baseline, when 4 months of oral antibiotics hadn't done that. I would say go for it, you'll hate 'giving up,' but you will feel sooooo much better.
Mariah
 
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ryry11

New member
Hi Sasha.
I'm 19. I went away to college this year, knowing I was sick. Hospitalization wasn't offered to me, but I knew in the back of my mind that I should really be hospitalized. I did all my meds, everything, but in mid-October, I started coughing up blood, and was admitted the next afternoon. Trust me. It really, really, really sucks. I'm not going to pretend it doesn't suck. It screws up school, it screws up your social life, it makes you miserable...but it's so completely worth it. I spent 2 weeks in the hospital, and my PFTs were back to baseline, when 4 months of oral antibiotics hadn't done that. I would say go for it, you'll hate 'giving up,' but you will feel sooooo much better.
Mariah
 
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