Sport was my life, can i ever get that back?

C

Ci

New member
Hey! my names Cianne, im 19 and i was diognosed at 2. i had been really healthy most of my life and then about a year ago i started getting really ill. my parents had chossen to make me do as much sport as possible when i was young instead of doing physio everyday. id got really into a sport called wakeboarding. i was living in orlando when i got ill (i grew up in ireland so i was pretty far from home) and i was competing at a professional level. i wasnt even on any meds atall. i became national champion, 6th in europe and 9th in the world. it was my life. and then i got REALLY sick.

i started getting treated in switzerland, then orlando. then switzerland, then holland and im still in holland now. i had always been really stuborn about my meds. never wanted to take them and always had a 'screw you' state of mind about it. like im giving in to the disease if i take them. im admitting defeat. so even when the doctors told me what i really had to be taking i just didnt. still dont. i cant bring myself to do Tobi when i was able to spend 6 hours on the water with no problems atall just last year. and i cant take the pills cus i just cant. i dont know why. i just cant do it. its all in my head. i thought i was better, and guess i still do. now im sitting her with a cental line in my chest, 2 four inch long tubes hanging out my shoulder, doing iv everyday. and i havnt been on a board in 8 months. i had to quit. cold turkey. mainly from the pain in my chest and i cant move my shoulder to much cus the line is attached to my skin and i cant blow the stiches. and cus it just hurts now. i get so tired so fast. and so out of breath. i cough constantly.

can it get better? i mean i know your lung function can improve marginaly and you go through good patches and bad patches, but can i get back to what i was? when some asks me 'are you done with wakeboarding professionaly' do i have to say yes?

sorry bout the spelling, on a german keyboard and still havnt worked it out lol. any input would really help. thanks

Ci
 
C

Ci

New member
Hey! my names Cianne, im 19 and i was diognosed at 2. i had been really healthy most of my life and then about a year ago i started getting really ill. my parents had chossen to make me do as much sport as possible when i was young instead of doing physio everyday. id got really into a sport called wakeboarding. i was living in orlando when i got ill (i grew up in ireland so i was pretty far from home) and i was competing at a professional level. i wasnt even on any meds atall. i became national champion, 6th in europe and 9th in the world. it was my life. and then i got REALLY sick.

i started getting treated in switzerland, then orlando. then switzerland, then holland and im still in holland now. i had always been really stuborn about my meds. never wanted to take them and always had a 'screw you' state of mind about it. like im giving in to the disease if i take them. im admitting defeat. so even when the doctors told me what i really had to be taking i just didnt. still dont. i cant bring myself to do Tobi when i was able to spend 6 hours on the water with no problems atall just last year. and i cant take the pills cus i just cant. i dont know why. i just cant do it. its all in my head. i thought i was better, and guess i still do. now im sitting her with a cental line in my chest, 2 four inch long tubes hanging out my shoulder, doing iv everyday. and i havnt been on a board in 8 months. i had to quit. cold turkey. mainly from the pain in my chest and i cant move my shoulder to much cus the line is attached to my skin and i cant blow the stiches. and cus it just hurts now. i get so tired so fast. and so out of breath. i cough constantly.

can it get better? i mean i know your lung function can improve marginaly and you go through good patches and bad patches, but can i get back to what i was? when some asks me 'are you done with wakeboarding professionaly' do i have to say yes?

sorry bout the spelling, on a german keyboard and still havnt worked it out lol. any input would really help. thanks

Ci
 
C

Ci

New member
Hey! my names Cianne, im 19 and i was diognosed at 2. i had been really healthy most of my life and then about a year ago i started getting really ill. my parents had chossen to make me do as much sport as possible when i was young instead of doing physio everyday. id got really into a sport called wakeboarding. i was living in orlando when i got ill (i grew up in ireland so i was pretty far from home) and i was competing at a professional level. i wasnt even on any meds atall. i became national champion, 6th in europe and 9th in the world. it was my life. and then i got REALLY sick.
<br />
<br />i started getting treated in switzerland, then orlando. then switzerland, then holland and im still in holland now. i had always been really stuborn about my meds. never wanted to take them and always had a 'screw you' state of mind about it. like im giving in to the disease if i take them. im admitting defeat. so even when the doctors told me what i really had to be taking i just didnt. still dont. i cant bring myself to do Tobi when i was able to spend 6 hours on the water with no problems atall just last year. and i cant take the pills cus i just cant. i dont know why. i just cant do it. its all in my head. i thought i was better, and guess i still do. now im sitting her with a cental line in my chest, 2 four inch long tubes hanging out my shoulder, doing iv everyday. and i havnt been on a board in 8 months. i had to quit. cold turkey. mainly from the pain in my chest and i cant move my shoulder to much cus the line is attached to my skin and i cant blow the stiches. and cus it just hurts now. i get so tired so fast. and so out of breath. i cough constantly.
<br />
<br />can it get better? i mean i know your lung function can improve marginaly and you go through good patches and bad patches, but can i get back to what i was? when some asks me 'are you done with wakeboarding professionaly' do i have to say yes?
<br />
<br />sorry bout the spelling, on a german keyboard and still havnt worked it out lol. any input would really help. thanks
<br />
<br />Ci
 
C

CountryGirl

New member
Hey Cianne,

I'm sorry to be the bearer to bad news but it seems like no one else is willing to tell you the truth as to spare your feelings.

Looking at the bugs you have, Psuedomonas AND MRSA, you aren't gonna get any better if you aren't willing to put in the time and effort to get better. TOBI is huge when is comes to fighting Psuedo. and MRSA as well as Pulmozyme. Your lung function isn't going to come back up to what it was when you aren't willing to help it stay there. You will need to do your treatments and respiratory therapy to stay healthy or you will end right back up in the hospital just as soon as you were let out and you won't be returning to Pro Wakeboarding.
 
C

CountryGirl

New member
Hey Cianne,

I'm sorry to be the bearer to bad news but it seems like no one else is willing to tell you the truth as to spare your feelings.

Looking at the bugs you have, Psuedomonas AND MRSA, you aren't gonna get any better if you aren't willing to put in the time and effort to get better. TOBI is huge when is comes to fighting Psuedo. and MRSA as well as Pulmozyme. Your lung function isn't going to come back up to what it was when you aren't willing to help it stay there. You will need to do your treatments and respiratory therapy to stay healthy or you will end right back up in the hospital just as soon as you were let out and you won't be returning to Pro Wakeboarding.
 
C

CountryGirl

New member
Hey Cianne,
<br />
<br />I'm sorry to be the bearer to bad news but it seems like no one else is willing to tell you the truth as to spare your feelings.
<br />
<br />Looking at the bugs you have, Psuedomonas AND MRSA, you aren't gonna get any better if you aren't willing to put in the time and effort to get better. TOBI is huge when is comes to fighting Psuedo. and MRSA as well as Pulmozyme. Your lung function isn't going to come back up to what it was when you aren't willing to help it stay there. You will need to do your treatments and respiratory therapy to stay healthy or you will end right back up in the hospital just as soon as you were let out and you won't be returning to Pro Wakeboarding.
 
P

PatrickM

New member
Hi Ci,

First of all WOW! Congratulations on your accomplishments wake boarding! Sounds like you are very talented. I have a son who is 13 with CF and he is a snowboarder. He's been in 4 National Competitions, has never won but he does all right. :) Every time he competes in Colorado and we deal with altitude I feel very blessed that he is able to do the sport he loves so much. I hope this is something he will continue to be able to do for a long time.

I understand your parents ideas about using sport for chest pt and I think as much as you can you should still do that. Exercise is great for you. BUT you absolutely have to add taking any of the medications/treatments prescribed to you. I understand wanting to say screw you to this disease but unfortunately you'll only suffer more. Right now there are a lot of good medications available to you that weren't around to help people even 10 years ago. Take advantage of all the treatments out there and do anything you can to be healthy so you can enjoy your sport. That is the best way to say screw you to CF. There is so much about this disease that you can't control, like culturing MRSA for example, but control what you can. You aren't giving in by
taking medication, that is fighting, and that is reclaiming your life. I know it is very hard especially if you have done so well for such a long time but please take care of yourself. Keeping yourself healthy is the only way you are going to be able to continue to enjoy the wake boarding. And then yeah who says you can't be a professional wakeboarder. If you want it bad enough be vigilant about taking all of your medication even when you feel good, and then you have a chance to have a go with the wake boarding.

Finally 2 books you should read if you have a chance. "Who Says I Can't" by Jothy Rosenberg. This is a guy I know that had an above the knee amputation due to cancer at age 16, he also had one lung removed. He wanted to be an athlete and he has done just that and more and that is his story. Next "Seven Letters That Changed My LIfe" written by Dottie Lessard a CF athlete who had a double lung transplant and a kidney transplant and she is a Nike sponsored athlete. These folks might inspire you.

I wish you the very best of luck. Keep us posted on how you are doing.

Tara
 
P

PatrickM

New member
Hi Ci,

First of all WOW! Congratulations on your accomplishments wake boarding! Sounds like you are very talented. I have a son who is 13 with CF and he is a snowboarder. He's been in 4 National Competitions, has never won but he does all right. :) Every time he competes in Colorado and we deal with altitude I feel very blessed that he is able to do the sport he loves so much. I hope this is something he will continue to be able to do for a long time.

I understand your parents ideas about using sport for chest pt and I think as much as you can you should still do that. Exercise is great for you. BUT you absolutely have to add taking any of the medications/treatments prescribed to you. I understand wanting to say screw you to this disease but unfortunately you'll only suffer more. Right now there are a lot of good medications available to you that weren't around to help people even 10 years ago. Take advantage of all the treatments out there and do anything you can to be healthy so you can enjoy your sport. That is the best way to say screw you to CF. There is so much about this disease that you can't control, like culturing MRSA for example, but control what you can. You aren't giving in by
taking medication, that is fighting, and that is reclaiming your life. I know it is very hard especially if you have done so well for such a long time but please take care of yourself. Keeping yourself healthy is the only way you are going to be able to continue to enjoy the wake boarding. And then yeah who says you can't be a professional wakeboarder. If you want it bad enough be vigilant about taking all of your medication even when you feel good, and then you have a chance to have a go with the wake boarding.

Finally 2 books you should read if you have a chance. "Who Says I Can't" by Jothy Rosenberg. This is a guy I know that had an above the knee amputation due to cancer at age 16, he also had one lung removed. He wanted to be an athlete and he has done just that and more and that is his story. Next "Seven Letters That Changed My LIfe" written by Dottie Lessard a CF athlete who had a double lung transplant and a kidney transplant and she is a Nike sponsored athlete. These folks might inspire you.

I wish you the very best of luck. Keep us posted on how you are doing.

Tara
 
P

PatrickM

New member
Hi Ci,
<br />
<br />First of all WOW! Congratulations on your accomplishments wake boarding! Sounds like you are very talented. I have a son who is 13 with CF and he is a snowboarder. He's been in 4 National Competitions, has never won but he does all right. :) Every time he competes in Colorado and we deal with altitude I feel very blessed that he is able to do the sport he loves so much. I hope this is something he will continue to be able to do for a long time.
<br />
<br /> I understand your parents ideas about using sport for chest pt and I think as much as you can you should still do that. Exercise is great for you. BUT you absolutely have to add taking any of the medications/treatments prescribed to you. I understand wanting to say screw you to this disease but unfortunately you'll only suffer more. Right now there are a lot of good medications available to you that weren't around to help people even 10 years ago. Take advantage of all the treatments out there and do anything you can to be healthy so you can enjoy your sport. That is the best way to say screw you to CF. There is so much about this disease that you can't control, like culturing MRSA for example, but control what you can. You aren't giving in by
<br />taking medication, that is fighting, and that is reclaiming your life. I know it is very hard especially if you have done so well for such a long time but please take care of yourself. Keeping yourself healthy is the only way you are going to be able to continue to enjoy the wake boarding. And then yeah who says you can't be a professional wakeboarder. If you want it bad enough be vigilant about taking all of your medication even when you feel good, and then you have a chance to have a go with the wake boarding.
<br />
<br />Finally 2 books you should read if you have a chance. "Who Says I Can't" by Jothy Rosenberg. This is a guy I know that had an above the knee amputation due to cancer at age 16, he also had one lung removed. He wanted to be an athlete and he has done just that and more and that is his story. Next "Seven Letters That Changed My LIfe" written by Dottie Lessard a CF athlete who had a double lung transplant and a kidney transplant and she is a Nike sponsored athlete. These folks might inspire you.
<br />
<br />I wish you the very best of luck. Keep us posted on how you are doing.
<br />
<br />Tara
 
A

AleksandraKaczynska

New member
Hi,
I'm a mom to a 3 year old with cf.
We're neighbours.... I live in Poland.
I used to do alot of sports - not professionally - I'm a climber and high mountain skier, i run and used to practice swimming.
But now I'm a mom and soon will be a mom for a second time.
My daughter also does sports - on her 3 year old level <img src="i/expressions/face-icon-small-happy.gif" border="0">
I love to see her grow.
I think that soon I'll be back in the mountains again. I hope.... and take no exuces.
You're into competition very much - compete with your health - you're very strong to make it that far in sports - don't give up just cause you're out of breath - ceep on "running".
 
A

AleksandraKaczynska

New member
Hi,
I'm a mom to a 3 year old with cf.
We're neighbours.... I live in Poland.
I used to do alot of sports - not professionally - I'm a climber and high mountain skier, i run and used to practice swimming.
But now I'm a mom and soon will be a mom for a second time.
My daughter also does sports - on her 3 year old level <img src="i/expressions/face-icon-small-happy.gif" border="0">
I love to see her grow.
I think that soon I'll be back in the mountains again. I hope.... and take no exuces.
You're into competition very much - compete with your health - you're very strong to make it that far in sports - don't give up just cause you're out of breath - ceep on "running".
 
A

AleksandraKaczynska

New member
Hi,
<br />I'm a mom to a 3 year old with cf.
<br />We're neighbours.... I live in Poland.
<br />I used to do alot of sports - not professionally - I'm a climber and high mountain skier, i run and used to practice swimming.
<br />But now I'm a mom and soon will be a mom for a second time.
<br />My daughter also does sports - on her 3 year old level <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />I love to see her grow.
<br />I think that soon I'll be back in the mountains again. I hope.... and take no exuces.
<br />You're into competition very much - compete with your health - you're very strong to make it that far in sports - don't give up just cause you're out of breath - ceep on "running".
<br />
 
T

tarheel

Guest
well,
no. As long as you continue to ignore everything like you are, no. Never. Ever.

Let that sink in.

Then think if giving up what you really love for the sake of insulting an inanimate refrigerated medication is worth it.
 
T

tarheel

Guest
well,
no. As long as you continue to ignore everything like you are, no. Never. Ever.

Let that sink in.

Then think if giving up what you really love for the sake of insulting an inanimate refrigerated medication is worth it.
 
T

tarheel

Guest
well,
<br />no. As long as you continue to ignore everything like you are, no. Never. Ever.
<br />
<br />Let that sink in.
<br />
<br />Then think if giving up what you really love for the sake of insulting an inanimate refrigerated medication is worth it.
 
M

Murgie

New member
HI Cianne,
Hope this isnt too much of a delay for a response.
I agree with Tara and her wisdom in encouraging you to see the potential you still have in front of you. With the obvious determination you have had in sports, you can have in this disease. I am so sorry for the disapointment that has turned your life around, perhaps the best advise would be to look straight ahead as you drive into your future, driving with our eyes on the rear view mirror never gets us far safely ! Look forward and know that you can still accomplish amazing things.
 
M

Murgie

New member
HI Cianne,
Hope this isnt too much of a delay for a response.
I agree with Tara and her wisdom in encouraging you to see the potential you still have in front of you. With the obvious determination you have had in sports, you can have in this disease. I am so sorry for the disapointment that has turned your life around, perhaps the best advise would be to look straight ahead as you drive into your future, driving with our eyes on the rear view mirror never gets us far safely ! Look forward and know that you can still accomplish amazing things.
 
M

Murgie

New member
HI Cianne,
<br /> Hope this isnt too much of a delay for a response.
<br />I agree with Tara and her wisdom in encouraging you to see the potential you still have in front of you. With the obvious determination you have had in sports, you can have in this disease. I am so sorry for the disapointment that has turned your life around, perhaps the best advise would be to look straight ahead as you drive into your future, driving with our eyes on the rear view mirror never gets us far safely ! Look forward and know that you can still accomplish amazing things.
 
M

mag6125

New member
Not to be too mean but I'm gonna chime in on the hard side here. CF isn't something you can ignore and think you beat it, no matter how well you were doing before if you do nothing to take care of yourself you'll end up getting taken out by it a lot sooner than you should. I feel I can say this because I use to be like you too. I didn't completely ignore my meds tho, I lived my life with CF as a part of it, not controlling it and I did what meds I had to to get by and feel pretty good. I've always been an athlete and at the height of it all I was playing college ice hockey and on the ice 4-6 days a week, but I got one bad infection and that changed literally in a months time. Now just three years later I am officially waiting for a lung transplant and fighting off my first ever round of pneumonia. I never thought I would have to go through a transplant this young, I thought I'd live forever and be able to be as active as I always was. Well let me tell you its a rude awakening when you going from being super active to not being able to do laundry or taking a shower without needing oxygen. So what I'd say is get it in gear if you really want to get back to what you love. Take every med and treatment your docs can suggest and run with it, do everything in your power to fight because like someone said above that's not giving in that's fighting to make your life what you want regardless of what this stupid disease has in store for you. That being said I hope you'll really think about what I had to say and that you can start doing the things you need to and feel better and get back out on that wakeboard!! I also recommend reading "The Seven Letters that Saved my Life" by Dottie Lessard, its made me focus on doing everything so I can get back to hockey after my transplant.
 
M

mag6125

New member
Not to be too mean but I'm gonna chime in on the hard side here. CF isn't something you can ignore and think you beat it, no matter how well you were doing before if you do nothing to take care of yourself you'll end up getting taken out by it a lot sooner than you should. I feel I can say this because I use to be like you too. I didn't completely ignore my meds tho, I lived my life with CF as a part of it, not controlling it and I did what meds I had to to get by and feel pretty good. I've always been an athlete and at the height of it all I was playing college ice hockey and on the ice 4-6 days a week, but I got one bad infection and that changed literally in a months time. Now just three years later I am officially waiting for a lung transplant and fighting off my first ever round of pneumonia. I never thought I would have to go through a transplant this young, I thought I'd live forever and be able to be as active as I always was. Well let me tell you its a rude awakening when you going from being super active to not being able to do laundry or taking a shower without needing oxygen. So what I'd say is get it in gear if you really want to get back to what you love. Take every med and treatment your docs can suggest and run with it, do everything in your power to fight because like someone said above that's not giving in that's fighting to make your life what you want regardless of what this stupid disease has in store for you. That being said I hope you'll really think about what I had to say and that you can start doing the things you need to and feel better and get back out on that wakeboard!! I also recommend reading "The Seven Letters that Saved my Life" by Dottie Lessard, its made me focus on doing everything so I can get back to hockey after my transplant.
 
You must log in or register to reply here.
Top