What transitions did you go through with CF

[MOME2RT]

I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through.

For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about CF. Laws that we were entitled to. etc.

What Im asking is if you would share some transtions you went through dealing with CF & how you got through them.

Thanks.<img src="i/expressions/heart.gif" border="0">

 

[MOME2RT]

I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through.

For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about CF. Laws that we were entitled to. etc.

What Im asking is if you would share some transtions you went through dealing with CF & how you got through them.

Thanks.<img src="i/expressions/heart.gif" border="0">

 

[MOME2RT]

I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through.

For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about CF. Laws that we were entitled to. etc.

What Im asking is if you would share some transtions you went through dealing with CF & how you got through them.

Thanks.<img src="i/expressions/heart.gif" border="0">

 

[MOME2RT]

I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through.

For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about CF. Laws that we were entitled to. etc.

What Im asking is if you would share some transtions you went through dealing with CF & how you got through them.

Thanks.<img src="i/expressions/heart.gif" border="0">

 

[MOME2RT]

I thought I could get some help from you. We are putting together a newsletter & my topic is the transitions CFers & their families go through.
<br />
<br />For ex. I needed help on what to do when Reece started school. What to send, how I would go about getting certain papers to his nurse/teacher about CF. Laws that we were entitled to. etc.
<br />
<br />What Im asking is if you would share some transtions you went through dealing with CF & how you got through them.
<br />
<br />Thanks.<img src="i/expressions/heart.gif" border="0">

 

[soderick]

The school thing was always pretty easy. My parents always met with teachers before each school year, gave them a 1-page write-up containing pertinent bits of info about CF and how it could affect my school life. They ensured that I would ALWAYS be allowed to visit the bathroom, even if it was a time when kids weren't allowed to go. They managed to get schools to let me carry my own enzymes and inhaler, but that's not always easy. They also explained to teachers ahead of time the possibility of hospital visits so they would be willing to compile independent study work on demand. It was generally effective. Nothing else was ever needed, so we didn't really brush up on the laws. I did get a 504 waiver in high school to exempt me from the PE requirement because my school had a nazi for a PE leader, and I wouldn't have been able to keep up or make up the missed classes (2 lunch periods for every 1 missed class!) I would have missed too many lunches, leading to even more health problems.

A big transition all CFers go through (at least later in life) is the change from pediatric care to adult care. It seems simple enough, but it is a big milestone in most families. You have to feel safe and confident in the new team, and you have to be independent enough to convey a lot of your own health information. My doctor recently mentioned that she's trying to compile a basic checklist of things CF patients should be able to do at each age to encourage independence, which will ultimately make the transition to adult care easier.

 

[soderick]

The school thing was always pretty easy. My parents always met with teachers before each school year, gave them a 1-page write-up containing pertinent bits of info about CF and how it could affect my school life. They ensured that I would ALWAYS be allowed to visit the bathroom, even if it was a time when kids weren't allowed to go. They managed to get schools to let me carry my own enzymes and inhaler, but that's not always easy. They also explained to teachers ahead of time the possibility of hospital visits so they would be willing to compile independent study work on demand. It was generally effective. Nothing else was ever needed, so we didn't really brush up on the laws. I did get a 504 waiver in high school to exempt me from the PE requirement because my school had a nazi for a PE leader, and I wouldn't have been able to keep up or make up the missed classes (2 lunch periods for every 1 missed class!) I would have missed too many lunches, leading to even more health problems.

A big transition all CFers go through (at least later in life) is the change from pediatric care to adult care. It seems simple enough, but it is a big milestone in most families. You have to feel safe and confident in the new team, and you have to be independent enough to convey a lot of your own health information. My doctor recently mentioned that she's trying to compile a basic checklist of things CF patients should be able to do at each age to encourage independence, which will ultimately make the transition to adult care easier.

 

[soderick]

The school thing was always pretty easy. My parents always met with teachers before each school year, gave them a 1-page write-up containing pertinent bits of info about CF and how it could affect my school life. They ensured that I would ALWAYS be allowed to visit the bathroom, even if it was a time when kids weren't allowed to go. They managed to get schools to let me carry my own enzymes and inhaler, but that's not always easy. They also explained to teachers ahead of time the possibility of hospital visits so they would be willing to compile independent study work on demand. It was generally effective. Nothing else was ever needed, so we didn't really brush up on the laws. I did get a 504 waiver in high school to exempt me from the PE requirement because my school had a nazi for a PE leader, and I wouldn't have been able to keep up or make up the missed classes (2 lunch periods for every 1 missed class!) I would have missed too many lunches, leading to even more health problems.

A big transition all CFers go through (at least later in life) is the change from pediatric care to adult care. It seems simple enough, but it is a big milestone in most families. You have to feel safe and confident in the new team, and you have to be independent enough to convey a lot of your own health information. My doctor recently mentioned that she's trying to compile a basic checklist of things CF patients should be able to do at each age to encourage independence, which will ultimately make the transition to adult care easier.

 

[soderick]

The school thing was always pretty easy. My parents always met with teachers before each school year, gave them a 1-page write-up containing pertinent bits of info about CF and how it could affect my school life. They ensured that I would ALWAYS be allowed to visit the bathroom, even if it was a time when kids weren't allowed to go. They managed to get schools to let me carry my own enzymes and inhaler, but that's not always easy. They also explained to teachers ahead of time the possibility of hospital visits so they would be willing to compile independent study work on demand. It was generally effective. Nothing else was ever needed, so we didn't really brush up on the laws. I did get a 504 waiver in high school to exempt me from the PE requirement because my school had a nazi for a PE leader, and I wouldn't have been able to keep up or make up the missed classes (2 lunch periods for every 1 missed class!) I would have missed too many lunches, leading to even more health problems.

A big transition all CFers go through (at least later in life) is the change from pediatric care to adult care. It seems simple enough, but it is a big milestone in most families. You have to feel safe and confident in the new team, and you have to be independent enough to convey a lot of your own health information. My doctor recently mentioned that she's trying to compile a basic checklist of things CF patients should be able to do at each age to encourage independence, which will ultimately make the transition to adult care easier.

 

[soderick]

The school thing was always pretty easy. My parents always met with teachers before each school year, gave them a 1-page write-up containing pertinent bits of info about CF and how it could affect my school life. They ensured that I would ALWAYS be allowed to visit the bathroom, even if it was a time when kids weren't allowed to go. They managed to get schools to let me carry my own enzymes and inhaler, but that's not always easy. They also explained to teachers ahead of time the possibility of hospital visits so they would be willing to compile independent study work on demand. It was generally effective. Nothing else was ever needed, so we didn't really brush up on the laws. I did get a 504 waiver in high school to exempt me from the PE requirement because my school had a nazi for a PE leader, and I wouldn't have been able to keep up or make up the missed classes (2 lunch periods for every 1 missed class!) I would have missed too many lunches, leading to even more health problems.
<br />
<br />A big transition all CFers go through (at least later in life) is the change from pediatric care to adult care. It seems simple enough, but it is a big milestone in most families. You have to feel safe and confident in the new team, and you have to be independent enough to convey a lot of your own health information. My doctor recently mentioned that she's trying to compile a basic checklist of things CF patients should be able to do at each age to encourage independence, which will ultimately make the transition to adult care easier.

 

[jaimers]

for me, the highschool to college transition was big. i went to boarding school my senior year of highschool but there was a 24 hour staffed health center that kept most of my meds (except enzymes and inhalers, but they had extras for me) and did chest pt (didn't have the vest at that time) so i wasn't *actually* responsible for my own care--just had to get my butt out of bed in the morning and go over there to get chest pt, etc.

so for me, going to college was the first time i was 100% responsible for my own care, all day, everyday. i failed pretty miserably and ended up doing a lot of damage that resulted in permanent loss of some lung function which i'm still kicking myself for now....anyway, i eventually (an by eventually, i mean 2 years later) got my act together and started taking care of myself and complying to the majority of my treatments.

something else that was really helpful to me that i should have registered for the first day of freshman year and not half way through my 1st senior year (yes, i had 2) was disability services. they were so incredibly helpful and helped me get extra time on tests, or later test dates, turn in assignments later, etc. they essentially smoothed through the ranks of deans, dept heads, professors, etc. to let me have any accommodations i needed to make it through school and stay healthy. HIGHLY recommend CFers look into whatever version of this service his/her university offers.

 

[jaimers]

for me, the highschool to college transition was big. i went to boarding school my senior year of highschool but there was a 24 hour staffed health center that kept most of my meds (except enzymes and inhalers, but they had extras for me) and did chest pt (didn't have the vest at that time) so i wasn't *actually* responsible for my own care--just had to get my butt out of bed in the morning and go over there to get chest pt, etc.

so for me, going to college was the first time i was 100% responsible for my own care, all day, everyday. i failed pretty miserably and ended up doing a lot of damage that resulted in permanent loss of some lung function which i'm still kicking myself for now....anyway, i eventually (an by eventually, i mean 2 years later) got my act together and started taking care of myself and complying to the majority of my treatments.

something else that was really helpful to me that i should have registered for the first day of freshman year and not half way through my 1st senior year (yes, i had 2) was disability services. they were so incredibly helpful and helped me get extra time on tests, or later test dates, turn in assignments later, etc. they essentially smoothed through the ranks of deans, dept heads, professors, etc. to let me have any accommodations i needed to make it through school and stay healthy. HIGHLY recommend CFers look into whatever version of this service his/her university offers.

 

[jaimers]

for me, the highschool to college transition was big. i went to boarding school my senior year of highschool but there was a 24 hour staffed health center that kept most of my meds (except enzymes and inhalers, but they had extras for me) and did chest pt (didn't have the vest at that time) so i wasn't *actually* responsible for my own care--just had to get my butt out of bed in the morning and go over there to get chest pt, etc.

so for me, going to college was the first time i was 100% responsible for my own care, all day, everyday. i failed pretty miserably and ended up doing a lot of damage that resulted in permanent loss of some lung function which i'm still kicking myself for now....anyway, i eventually (an by eventually, i mean 2 years later) got my act together and started taking care of myself and complying to the majority of my treatments.

something else that was really helpful to me that i should have registered for the first day of freshman year and not half way through my 1st senior year (yes, i had 2) was disability services. they were so incredibly helpful and helped me get extra time on tests, or later test dates, turn in assignments later, etc. they essentially smoothed through the ranks of deans, dept heads, professors, etc. to let me have any accommodations i needed to make it through school and stay healthy. HIGHLY recommend CFers look into whatever version of this service his/her university offers.

 

[jaimers]

for me, the highschool to college transition was big. i went to boarding school my senior year of highschool but there was a 24 hour staffed health center that kept most of my meds (except enzymes and inhalers, but they had extras for me) and did chest pt (didn't have the vest at that time) so i wasn't *actually* responsible for my own care--just had to get my butt out of bed in the morning and go over there to get chest pt, etc.

so for me, going to college was the first time i was 100% responsible for my own care, all day, everyday. i failed pretty miserably and ended up doing a lot of damage that resulted in permanent loss of some lung function which i'm still kicking myself for now....anyway, i eventually (an by eventually, i mean 2 years later) got my act together and started taking care of myself and complying to the majority of my treatments.

something else that was really helpful to me that i should have registered for the first day of freshman year and not half way through my 1st senior year (yes, i had 2) was disability services. they were so incredibly helpful and helped me get extra time on tests, or later test dates, turn in assignments later, etc. they essentially smoothed through the ranks of deans, dept heads, professors, etc. to let me have any accommodations i needed to make it through school and stay healthy. HIGHLY recommend CFers look into whatever version of this service his/her university offers.

 

[jaimers]

for me, the highschool to college transition was big. i went to boarding school my senior year of highschool but there was a 24 hour staffed health center that kept most of my meds (except enzymes and inhalers, but they had extras for me) and did chest pt (didn't have the vest at that time) so i wasn't *actually* responsible for my own care--just had to get my butt out of bed in the morning and go over there to get chest pt, etc.
<br />
<br />so for me, going to college was the first time i was 100% responsible for my own care, all day, everyday. i failed pretty miserably and ended up doing a lot of damage that resulted in permanent loss of some lung function which i'm still kicking myself for now....anyway, i eventually (an by eventually, i mean 2 years later) got my act together and started taking care of myself and complying to the majority of my treatments.
<br />
<br />something else that was really helpful to me that i should have registered for the first day of freshman year and not half way through my 1st senior year (yes, i had 2) was disability services. they were so incredibly helpful and helped me get extra time on tests, or later test dates, turn in assignments later, etc. they essentially smoothed through the ranks of deans, dept heads, professors, etc. to let me have any accommodations i needed to make it through school and stay healthy. HIGHLY recommend CFers look into whatever version of this service his/her university offers.

 

[kayleesgrandma]

Good responses you have here, I would also add that the school be aware that your clinic visits take 1/2 day at least, and that doesn't include travel time for those of you who don't live close (I am lucky, we only live 10 minutes away...)

Great project Leah.

 

[kayleesgrandma]

Good responses you have here, I would also add that the school be aware that your clinic visits take 1/2 day at least, and that doesn't include travel time for those of you who don't live close (I am lucky, we only live 10 minutes away...)

Great project Leah.

 

[kayleesgrandma]

Good responses you have here, I would also add that the school be aware that your clinic visits take 1/2 day at least, and that doesn't include travel time for those of you who don't live close (I am lucky, we only live 10 minutes away...)

Great project Leah.

 

[kayleesgrandma]

Good responses you have here, I would also add that the school be aware that your clinic visits take 1/2 day at least, and that doesn't include travel time for those of you who don't live close (I am lucky, we only live 10 minutes away...)

Great project Leah.

 

[kayleesgrandma]

Good responses you have here, I would also add that the school be aware that your clinic visits take 1/2 day at least, and that doesn't include travel time for those of you who don't live close (I am lucky, we only live 10 minutes away...)
<br />
<br />Great project Leah.