I dont do my treatments

[Gorf]

I don't have much to say except do your treatments, I was diagnosed at 3 years old, I know its hard to do them, I am 46 years old because I did them. I was also an active child, teen and young adult. Trampolines are great excersise and help and fun.

 

[Gorf]

I don't have much to say except do your treatments, I was diagnosed at 3 years old, I know its hard to do them, I am 46 years old because I did them. I was also an active child, teen and young adult. Trampolines are great excersise and help and fun.

 

[JennStar23]

hi tnessa, my name is jenn and im 23 and i was born with cf i was only 2 weeks old when they found out i has it. but believe me i have been going threw the same thing i had the polyps and had 3 surgerys when i was in 2nd grade i havent had any since then (knock on wood) but i rarely do my meds and go in and out of the hospital very 6 months to a year for a tune up, i think doin meds is a waste of time and so i got sent to a thereapist as well and was put on prozac for depression and go to thereapy once a week. i dont know if its really helping but its a try and on top of all that i just got out of a relationship so that made me not want to do meds either my thereapist actually told me to come on here and talk to other people with cf, so maybe we can chat and try to get threw this together even though u are younger i have been threw alot threw my life and maybe i can help you. but people are going to tell you to do your meds u have your whole life but honeslty i dont want to do meds the rest of my life i dont want to be hooked up to a vest and doing nebs all day long and missing out on life bc im stuck doing meds but i also hate feeling like ***** back im getting sick all the time.....

 

[JennStar23]

hi tnessa, my name is jenn and im 23 and i was born with cf i was only 2 weeks old when they found out i has it. but believe me i have been going threw the same thing i had the polyps and had 3 surgerys when i was in 2nd grade i havent had any since then (knock on wood) but i rarely do my meds and go in and out of the hospital very 6 months to a year for a tune up, i think doin meds is a waste of time and so i got sent to a thereapist as well and was put on prozac for depression and go to thereapy once a week. i dont know if its really helping but its a try and on top of all that i just got out of a relationship so that made me not want to do meds either my thereapist actually told me to come on here and talk to other people with cf, so maybe we can chat and try to get threw this together even though u are younger i have been threw alot threw my life and maybe i can help you. but people are going to tell you to do your meds u have your whole life but honeslty i dont want to do meds the rest of my life i dont want to be hooked up to a vest and doing nebs all day long and missing out on life bc im stuck doing meds but i also hate feeling like ***** back im getting sick all the time.....

 

[Tisha]

I've had depression too... But life goes on and CF is by no means a "death sentence", so have courage! I have had many "fits of rebellion" of not doing my treatments but that usually ended in IVs... Feel free to read my story! Stick in there!!

 

[Tisha]

I've had depression too... But life goes on and CF is by no means a "death sentence", so have courage! I have had many "fits of rebellion" of not doing my treatments but that usually ended in IVs... Feel free to read my story! Stick in there!!

 

[clarereal]

<strong>Hi, I don't know if you are on facebook or not...But, if you are, there is a great group called "CF Survivors Family and Friends Support Group" that has many people with cf on it. There are teenagers like you and a whole variety of people....Just thought I'd pass it along.....ck</strong>

 

[clarereal]

<strong>Hi, I don't know if you are on facebook or not...But, if you are, there is a great group called "CF Survivors Family and Friends Support Group" that has many people with cf on it. There are teenagers like you and a whole variety of people....Just thought I'd pass it along.....ck</strong>

 

[Murgie]

I agree with Tammy G needing to find ways to treat her 4 year old who cannot make these decisions for himself. PLEASE Tammy , learn all you can before neglecting the needs of your child. I would say however, that if your CF clininc does not support your questioning some meds and procedures, try another. I dont recommend blindly doing what every doctor says, but research each side effect/long term effect/ and make your decisions with a health care profesional based on your compiled information.
I am impressed with the mother of 3 who has endured so much scrutiny unnecessarily! You are my hero mom, caring so for 3 children with CF has got to be taxing on you! I hope each of you find strength and courage to help our children fight this battle with Cystic Fibrosis, its ugly, its painful, its uncomfortable. BUT IT DOESNT go away..I hope my son will be like the 46 year old Dad who defys all CF logic, and has a child of his own. I suspect he appreciates every breathing moment life gives him!
Teaching your son early to be compliant with his treatments, will enable him to make his own health care decisions as a teenager. Not assisting him or teaching him really makes that decision for him, to ignore it. As a mother of a teenager, I respect my son a great deal for doing his treatments 3 times a day! Sure its a hassle, but SAMAZING knows its in his best interest, and he rarely misses. Rebellion is settling in in some areas of his life and I am preparred to give him some leway. If I had not taught and encouraged him since he was diagnosed, that treatments were part of his daily routine. Where would he be today, or would he even be here?!

 

[Murgie]

I agree with Tammy G needing to find ways to treat her 4 year old who cannot make these decisions for himself. PLEASE Tammy , learn all you can before neglecting the needs of your child. I would say however, that if your CF clininc does not support your questioning some meds and procedures, try another. I dont recommend blindly doing what every doctor says, but research each side effect/long term effect/ and make your decisions with a health care profesional based on your compiled information.
I am impressed with the mother of 3 who has endured so much scrutiny unnecessarily! You are my hero mom, caring so for 3 children with CF has got to be taxing on you! I hope each of you find strength and courage to help our children fight this battle with Cystic Fibrosis, its ugly, its painful, its uncomfortable. BUT IT DOESNT go away..I hope my son will be like the 46 year old Dad who defys all CF logic, and has a child of his own. I suspect he appreciates every breathing moment life gives him!
Teaching your son early to be compliant with his treatments, will enable him to make his own health care decisions as a teenager. Not assisting him or teaching him really makes that decision for him, to ignore it. As a mother of a teenager, I respect my son a great deal for doing his treatments 3 times a day! Sure its a hassle, but SAMAZING knows its in his best interest, and he rarely misses. Rebellion is settling in in some areas of his life and I am preparred to give him some leway. If I had not taught and encouraged him since he was diagnosed, that treatments were part of his daily routine. Where would he be today, or would he even be here?!

 

[dream2live]

<strong>tnessa.....we are all here on this blog to help and support one another. Depression is real and when it collides with CF, yea, there have been times I didn't want to do my treatments anymore. Stay strong and know we are all here for each other.</strong>

 

[dream2live]

<strong>tnessa.....we are all here on this blog to help and support one another. Depression is real and when it collides with CF, yea, there have been times I didn't want to do my treatments anymore. Stay strong and know we are all here for each other.</strong>

 

[imported_Momto2]

TammieG, The scary thing to me about your situation is that lung damage can occur without you or your child being aware of it. When I was a kid, my FEV could drop 20% and it was hard to tell on a daily basis. The same goes with people who have asthma...a mom was just telling me a few days ago that she thought her child was doing great, took her to a routine docs visit and the kid had significant wheezing and infection that she did not know about. Your child is young. They may not "notice" small changes that can lead to serious changes that can significantly lower life expectancy.

Also, please keep in mind that people with CF often have unexplained "triggers", where the disease quickly worsens, with no explanation. Habits your child is learning now with regard for caring for his CF may make or break him later. Please keep this in mind.

 

[imported_Momto2]

TammieG, The scary thing to me about your situation is that lung damage can occur without you or your child being aware of it. When I was a kid, my FEV could drop 20% and it was hard to tell on a daily basis. The same goes with people who have asthma...a mom was just telling me a few days ago that she thought her child was doing great, took her to a routine docs visit and the kid had significant wheezing and infection that she did not know about. Your child is young. They may not "notice" small changes that can lead to serious changes that can significantly lower life expectancy.

Also, please keep in mind that people with CF often have unexplained "triggers", where the disease quickly worsens, with no explanation. Habits your child is learning now with regard for caring for his CF may make or break him later. Please keep this in mind.

 

[anthonyeric]

I never did my vest or any treatments what so ever until the age of 17. My PFTS were always in the 100's. usually 115+. I was always active as a kid, playing sports year round and having a good appetite. Once i graduated high school everything went down hill, i became a lot less active. My PFTs dropped to 86%. I got admitted into John's Hopkins Outpatient Center for 2 weeks and was put on IV's, the same thing happened a year later. Now im 19, about to turn 20 in august. PFT's have ranged from 104-108 since last year. With going to school full time and working over night, its hard but i make sure i put aside time for my vest and tobi, etc. I found out that i qualify to take kalydeco, hoping to hear from the insurance company soon...

 

[anthonyeric]

I never did my vest or any treatments what so ever until the age of 17. My PFTS were always in the 100's. usually 115+. I was always active as a kid, playing sports year round and having a good appetite. Once i graduated high school everything went down hill, i became a lot less active. My PFTs dropped to 86%. I got admitted into John's Hopkins Outpatient Center for 2 weeks and was put on IV's, the same thing happened a year later. Now im 19, about to turn 20 in august. PFT's have ranged from 104-108 since last year. With going to school full time and working over night, its hard but i make sure i put aside time for my vest and tobi, etc. I found out that i qualify to take kalydeco, hoping to hear from the insurance company soon...

 

[girlwithCF123]

I rebelled against my treatments for about a decade! My doctors and parents always wondered why. I never really got sick either until 4th grade (I think) I had nasal polyp surgery in 5th. I haven't since then though. Then Because I rebelled against my treatment they called a phsychiatrist this past month while I was hospitalized. They asked me questions and figured out I had Depression. After I got out of the hospital though I began doing my treatments more often. It's been about a month and I do them atleast ONCE a day. I'm still not great at them, but I'm getting there. If you'd like to talk I'll be glad to give you advice <img src="i/expressions/face-icon-small-happy.gif" border="0"> <3

 

[girlwithCF123]

I rebelled against my treatments for about a decade! My doctors and parents always wondered why. I never really got sick either until 4th grade (I think) I had nasal polyp surgery in 5th. I haven't since then though. Then Because I rebelled against my treatment they called a phsychiatrist this past month while I was hospitalized. They asked me questions and figured out I had Depression. After I got out of the hospital though I began doing my treatments more often. It's been about a month and I do them atleast ONCE a day. I'm still not great at them, but I'm getting there. If you'd like to talk I'll be glad to give you advice <img src="i/expressions/face-icon-small-happy.gif" border="0"> <3

 

[tnessa]

Hi everyone. thank you all for replying it really means a lot. i honestly didnt think so many people would reply but thanks u all give me hope. i hope i can be as strong as all of you are. i started doing my treatment so everything is good at the moment. im trying to be more brave and just being responsible. i hope all of you live a healthy life and ever since i found out i had cf ive felt completely alone but now i feel like i can come on here and i have people who understand so i dont feel as alone. thank you all sooo much. ill pray for all of you!! <33

 

[tnessa]

Hi everyone. thank you all for replying it really means a lot. i honestly didnt think so many people would reply but thanks u all give me hope. i hope i can be as strong as all of you are. i started doing my treatment so everything is good at the moment. im trying to be more brave and just being responsible. i hope all of you live a healthy life and ever since i found out i had cf ive felt completely alone but now i feel like i can come on here and i have people who understand so i dont feel as alone. thank you all sooo much. ill pray for all of you!! <33