Adults, tell me about your health as a child

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[NoExcuses]

I was diagnosed at 5 months of age with failure to thrive (with a sweat test, we didn't have genetic tests when i was born).

I was in the hospital at age 9 for pneumonia (i developed severe allergies and docs didn't realize how this was contibuting to my poor lung health).

In the hospital again at 15 (took my behind the wheel training with an IV in my arm). Another hospitalization at 19 (after a hernia repair at 18).

In the hospital twice at age 24.

My FEV1 is 95%. I work full time. I am dedicated to my treatments but also exercising and living life. I will be entering grad school in August.

I hope you aren't mislead by how often people are in the hospital. It's not a measure of health.

Proactive and frequent hospitalizations can be a great way of staving off lung damage. I am always confused by people who proudly say "I've never been in the hospital!!!" and their FEV1 is in the 70s. (not a reference to Wanderlost. I've seen many people say that on this board). I'd rather be in the hospital every 6 months and still have great lung function.

I was fortunate that my mother never missed a round of CPT with me. She educated me early and had me take over/understand my care at a very young age.

Part of it is luck. Part of it is environment. Part of it is care.

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mum2kj]

My daughter is 15 years old now. At birth she was rushed on the flying doctors to Perth and was operated on the same day. Her small intestine had perforated and her stomach was swollen and black. They cut 30cm's of intestine out. So along with the cf she has short gut syndrome.

As a baby we did postural drainage 3 times a day and she nebbed tobramyacin. Though she didn't have lung issues till the age of 6 when she had her first tune-up. Kj got a port at the age of nine even though she was only having yearly hospital visits. She constantly grew staph from the age of 6yrs, at 15 she grew staph, psuedo and steno. Her last culture was clear but I know that doesn't really mean anything till there has been about 3 clear cultures. She has been in hospital twice this year and I have a feeling it wont be long till she is in again <img src="i/expressions/face-icon-small-sad.gif" border="0">

I will say that in her 15yrs she has done everything that a person without cf had done at school ect... other than a few missed camps.

It's good that you are aggressive with her treatments. Make sure that the docs are also agressive with the staph as it is the staph that has caused the most damage in Kj's lungs. Kj was put on meropenem and tobra iv's and for the first time in years she had a clear culture, I only wish her doc was more aggressive with her treatment at a younger age.

Exercise is the best physio plus clearance. Make it a normal part of everyday and make it fun<img src="i/expressions/face-icon-small-smile.gif" border="0"> Then it's more enjoyable for everyone.

Keep up the great work, You are a fantastic mum <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[catboogie]

i was hospitalized at age 3 with pnemonia -- it was around that time that i was diagnosed. i wasn't in the hospital again until i was 11 for a round of IVs. then i was hospitalized several times in high school -- 4 or 5 times -- but it is hard to say how much of that was CF-related or how much was because of my smoking and noncompliance.

since college up until now, the last 10 years, i've been hospitalized/on IVs maybe 6 times or so. i've been much healthier as an adult since i have taken responsibility for my health and become more proactive. i find it much easier to be an adult with this disease as i now know what to expect, how to feel more in control, etc. it is especially better in the hospital where it seems like anything can be sprung on you -- you really have to be on your toes to make sure you are getting the best care.

best of luck!

 

[kybert]

i was fine when i was a child. i had 110% fev1 right up until high school. high school pretty much started the downhill process off. high school students dont stay home when they are sick, unlike primary school, so of course i caught everything that was going round. i lost count the amount of times i had to be sent home from catching colds, gastro and god knows what else. it was like i permanently had a cold. then i had severe abpa when i was 18. that did a lot of damage because it was left undiagnosed for a while. they only picked it up when it became so bad i was bed ridden for weeks. those things pretty much screwed up my lungs enough so that the infections i caught in the future were worse and harder to fight. im 99% sure that if i hadnt gone through those things id be extremely well today. *sigh* thats cf for ya.

 

[kybert]

i was fine when i was a child. i had 110% fev1 right up until high school. high school pretty much started the downhill process off. high school students dont stay home when they are sick, unlike primary school, so of course i caught everything that was going round. i lost count the amount of times i had to be sent home from catching colds, gastro and god knows what else. it was like i permanently had a cold. then i had severe abpa when i was 18. that did a lot of damage because it was left undiagnosed for a while. they only picked it up when it became so bad i was bed ridden for weeks. those things pretty much screwed up my lungs enough so that the infections i caught in the future were worse and harder to fight. im 99% sure that if i hadnt gone through those things id be extremely well today. *sigh* thats cf for ya.