how to save my life.

[littlepinkstar]

well lately, iv'e been looking at all the memorials and stuff of children my age that died from cf.. and they are so depressing, because a lot of them looked so healthy. iv'e had a collapsed lung in the past, so it's hard for me to do some stuff. my pfts right now are at 47% which i think is totally awful. i'm on IV antibiotics. (gentamycin and fortaz). i used to be so healthy... 100+ %. i really want to get my lungs back up there or healthier. im not just going to let myself die on everyone... i refuse to. does any one know what i can do to help myself? all this dying stuff is really putting me down. i know ill never have "normal" lungs... but that doesn't mean i cant do normal things like run, play, have sex for crying out loud... i want to be able to have a life. does anyone have advice for me? i really really appreciate it. thanks<3

 

[littlepinkstar]

well lately, iv'e been looking at all the memorials and stuff of children my age that died from cf.. and they are so depressing, because a lot of them looked so healthy. iv'e had a collapsed lung in the past, so it's hard for me to do some stuff. my pfts right now are at 47% which i think is totally awful. i'm on IV antibiotics. (gentamycin and fortaz). i used to be so healthy... 100+ %. i really want to get my lungs back up there or healthier. im not just going to let myself die on everyone... i refuse to. does any one know what i can do to help myself? all this dying stuff is really putting me down. i know ill never have "normal" lungs... but that doesn't mean i cant do normal things like run, play, have sex for crying out loud... i want to be able to have a life. does anyone have advice for me? i really really appreciate it. thanks<3

 

[littlepinkstar]

well lately, iv'e been looking at all the memorials and stuff of children my age that died from cf.. and they are so depressing, because a lot of them looked so healthy. iv'e had a collapsed lung in the past, so it's hard for me to do some stuff. my pfts right now are at 47% which i think is totally awful. i'm on IV antibiotics. (gentamycin and fortaz). i used to be so healthy... 100+ %. i really want to get my lungs back up there or healthier. im not just going to let myself die on everyone... i refuse to. does any one know what i can do to help myself? all this dying stuff is really putting me down. i know ill never have "normal" lungs... but that doesn't mean i cant do normal things like run, play, have sex for crying out loud... i want to be able to have a life. does anyone have advice for me? i really really appreciate it. thanks<3

 

[ladybug]

I'm sorry you're feeling a bit down about all of this. Seems we all have to go through so many emotions when dealing with this awful disease. Its great though that you want to take an active role in LIVING. That's so wonderful. I guess the only advice I have (and it has actually GAINED me 5-6% FEV1 over the past 5 years) is to exercise exercise exercise whenever and whatever you can! I used to do elliptical, now I run and do weights on occasion. I try to do it 3-4 times a week and have seen such an improvement. I know its hard to stay motivated to do anything when we can hardly breath some days, but even a walk or anything is something. Another thing that you can do is to keep as emotionally peaceful as possible. For me, that meant dropping out of grad school and focusing on nothing but my health. It also meant getting out of a crummy relationship 6 years ago that sucked the life out of me for 5+ years. I was so much better and more at peace when I got rid of the negative stuff in my life and just focused on the present and being here for ME. I prioritized the stuff I knew would make me healthy and kept doing that and got rid of stuff that I knew were bringing me down. I make time every day for ALL my treatments and excercise (3-4 times a week) and do IV meds when I'm really sick so I am sensitive to lots of antibiotics. These are some things that have worked for me.... I'm not advocating any of them for you, but just my opinion of what has given me back some of my lung function, energy, and zest for life. I'm sure its different for everyone, and I look forward to hearing what others have done to "fight".

Take care, Alyssa!

 

[ladybug]

I'm sorry you're feeling a bit down about all of this. Seems we all have to go through so many emotions when dealing with this awful disease. Its great though that you want to take an active role in LIVING. That's so wonderful. I guess the only advice I have (and it has actually GAINED me 5-6% FEV1 over the past 5 years) is to exercise exercise exercise whenever and whatever you can! I used to do elliptical, now I run and do weights on occasion. I try to do it 3-4 times a week and have seen such an improvement. I know its hard to stay motivated to do anything when we can hardly breath some days, but even a walk or anything is something. Another thing that you can do is to keep as emotionally peaceful as possible. For me, that meant dropping out of grad school and focusing on nothing but my health. It also meant getting out of a crummy relationship 6 years ago that sucked the life out of me for 5+ years. I was so much better and more at peace when I got rid of the negative stuff in my life and just focused on the present and being here for ME. I prioritized the stuff I knew would make me healthy and kept doing that and got rid of stuff that I knew were bringing me down. I make time every day for ALL my treatments and excercise (3-4 times a week) and do IV meds when I'm really sick so I am sensitive to lots of antibiotics. These are some things that have worked for me.... I'm not advocating any of them for you, but just my opinion of what has given me back some of my lung function, energy, and zest for life. I'm sure its different for everyone, and I look forward to hearing what others have done to "fight".

Take care, Alyssa!

 

[ladybug]

I'm sorry you're feeling a bit down about all of this. Seems we all have to go through so many emotions when dealing with this awful disease. Its great though that you want to take an active role in LIVING. That's so wonderful. I guess the only advice I have (and it has actually GAINED me 5-6% FEV1 over the past 5 years) is to exercise exercise exercise whenever and whatever you can! I used to do elliptical, now I run and do weights on occasion. I try to do it 3-4 times a week and have seen such an improvement. I know its hard to stay motivated to do anything when we can hardly breath some days, but even a walk or anything is something. Another thing that you can do is to keep as emotionally peaceful as possible. For me, that meant dropping out of grad school and focusing on nothing but my health. It also meant getting out of a crummy relationship 6 years ago that sucked the life out of me for 5+ years. I was so much better and more at peace when I got rid of the negative stuff in my life and just focused on the present and being here for ME. I prioritized the stuff I knew would make me healthy and kept doing that and got rid of stuff that I knew were bringing me down. I make time every day for ALL my treatments and excercise (3-4 times a week) and do IV meds when I'm really sick so I am sensitive to lots of antibiotics. These are some things that have worked for me.... I'm not advocating any of them for you, but just my opinion of what has given me back some of my lung function, energy, and zest for life. I'm sure its different for everyone, and I look forward to hearing what others have done to "fight".

Take care, Alyssa!

 

[ladybug]

oh, and i did want to mention that my pfts were in the LOW 50's when i was struggling with school and relationship stuff and just too much stress. so, my numbers were really close to yours. now, i am at a baseline that's higher... and, though it took 5 years to get here, i don't plan on dropping again without a fight! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

oh, and i did want to mention that my pfts were in the LOW 50's when i was struggling with school and relationship stuff and just too much stress. so, my numbers were really close to yours. now, i am at a baseline that's higher... and, though it took 5 years to get here, i don't plan on dropping again without a fight! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[ladybug]

oh, and i did want to mention that my pfts were in the LOW 50's when i was struggling with school and relationship stuff and just too much stress. so, my numbers were really close to yours. now, i am at a baseline that's higher... and, though it took 5 years to get here, i don't plan on dropping again without a fight! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[cysticfibrosisgirl]

My PFT's are 65% and they feel like there getting lower. I don't have a CF care team becuase my sweat tests where normal but I do have very different genes for CF. I am very ill and no CF center will take care of me just my inturnest.

who well is kind of (whcky) I scard that I going to die becuase of all this. I do the vest 4 times a day Pulozyme Atrovent Albuterol Muconyst Hypertonic Saline SourceCF ADEK's UltraseMT 20's 8 with meals and 5 with snacks.

I have to wear a medical mack when I go out becuase I get sick the next day if I don't. Doctors have said that I do have Cystic Fibrosis but no one will take care of me. (I think it is becuase I have Autism so just becuase I am a little different the CF care centers don't want to work with me) That's what I think it is.

Becuase when I call the CF nurse she just gets mad at me and askeds me why I am calling. I am calling becuase I am sick and I need help. Don't they get it?? I live in MN and the U or M won't take me for CF care. I have had it!

My mom says that if I die she will sue the U of M for not helping me get better. And yes there are things they can do and they know it!

-------------------------------------------------------------------------------------------
Just an uncared for CF kid from MN. 18/w CF kkkashley@comcast.com

 

[cysticfibrosisgirl]

My PFT's are 65% and they feel like there getting lower. I don't have a CF care team becuase my sweat tests where normal but I do have very different genes for CF. I am very ill and no CF center will take care of me just my inturnest.

who well is kind of (whcky) I scard that I going to die becuase of all this. I do the vest 4 times a day Pulozyme Atrovent Albuterol Muconyst Hypertonic Saline SourceCF ADEK's UltraseMT 20's 8 with meals and 5 with snacks.

I have to wear a medical mack when I go out becuase I get sick the next day if I don't. Doctors have said that I do have Cystic Fibrosis but no one will take care of me. (I think it is becuase I have Autism so just becuase I am a little different the CF care centers don't want to work with me) That's what I think it is.

Becuase when I call the CF nurse she just gets mad at me and askeds me why I am calling. I am calling becuase I am sick and I need help. Don't they get it?? I live in MN and the U or M won't take me for CF care. I have had it!

My mom says that if I die she will sue the U of M for not helping me get better. And yes there are things they can do and they know it!

-------------------------------------------------------------------------------------------
Just an uncared for CF kid from MN. 18/w CF kkkashley@comcast.com

 

[cysticfibrosisgirl]

My PFT's are 65% and they feel like there getting lower. I don't have a CF care team becuase my sweat tests where normal but I do have very different genes for CF. I am very ill and no CF center will take care of me just my inturnest.

who well is kind of (whcky) I scard that I going to die becuase of all this. I do the vest 4 times a day Pulozyme Atrovent Albuterol Muconyst Hypertonic Saline SourceCF ADEK's UltraseMT 20's 8 with meals and 5 with snacks.

I have to wear a medical mack when I go out becuase I get sick the next day if I don't. Doctors have said that I do have Cystic Fibrosis but no one will take care of me. (I think it is becuase I have Autism so just becuase I am a little different the CF care centers don't want to work with me) That's what I think it is.

Becuase when I call the CF nurse she just gets mad at me and askeds me why I am calling. I am calling becuase I am sick and I need help. Don't they get it?? I live in MN and the U or M won't take me for CF care. I have had it!

My mom says that if I die she will sue the U of M for not helping me get better. And yes there are things they can do and they know it!

-------------------------------------------------------------------------------------------
Just an uncared for CF kid from MN. 18/w CF kkkashley@comcast.com

 

[cysticfibrosisgirl]

I also am positive for cocci and bacilli. I was told that this is a tape of pheumococcus A. Seen in CF people. I am scard. I have not gone BM for a whole week now! what do I do?
-------------------------------------------------------------------------------------------
just an uncared for CF kid from MN 18/w CF

 

[cysticfibrosisgirl]

I also am positive for cocci and bacilli. I was told that this is a tape of pheumococcus A. Seen in CF people. I am scard. I have not gone BM for a whole week now! what do I do?
-------------------------------------------------------------------------------------------
just an uncared for CF kid from MN 18/w CF

 

[cysticfibrosisgirl]

I also am positive for cocci and bacilli. I was told that this is a tape of pheumococcus A. Seen in CF people. I am scard. I have not gone BM for a whole week now! what do I do?
-------------------------------------------------------------------------------------------
just an uncared for CF kid from MN 18/w CF

 

[beleache]

I think Sonia said it best, you have to stay focused on your health issues, and fight, fight, fight...... God Bless..... Joni 54 soon to be 55 y/o f w c/f P.S. we all get down, that's why this site is so great, it feels great to be able to vent....

 

[beleache]

I think Sonia said it best, you have to stay focused on your health issues, and fight, fight, fight...... God Bless..... Joni 54 soon to be 55 y/o f w c/f P.S. we all get down, that's why this site is so great, it feels great to be able to vent....

 

[beleache]

I think Sonia said it best, you have to stay focused on your health issues, and fight, fight, fight...... God Bless..... Joni 54 soon to be 55 y/o f w c/f P.S. we all get down, that's why this site is so great, it feels great to be able to vent....

 

[jbrandonAW]

Best advice is this: Do your meds how they are prescribe, Eat Well, and exercise (run/walk/swim). I have only been doing this a few day and I went to the doc and my pfts went from 53%: 60%

CF girl: Get a lawyer, They CAN'T refuse care for you. That's illegal.

 

[jbrandonAW]

Best advice is this: Do your meds how they are prescribe, Eat Well, and exercise (run/walk/swim). I have only been doing this a few day and I went to the doc and my pfts went from 53%: 60%

CF girl: Get a lawyer, They CAN'T refuse care for you. That's illegal.