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.
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Adults, tell me about your health as a child
- Thread starter rcq925
- Start date
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.
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.
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.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
lightNlife
New member
Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
That was nearly 3 decades ago.
I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)
The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.
We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.
I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.
As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Obsessive compulsive disorder. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.
I'm not dying from CF-I'm living with it. And not just living. I'm thriving.
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
JennifersHope
New member
I was not dx until I was 29 so I don't know if they would have treated me different as far as putting me in the hospital as a child or not, but I was in the hospital at 2 weeks old for pneumonia, then again at 2 years old for bowel obstruction.
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
I was on oral antibiotics on average every two to three months from the time I was in Kindergarten until I was dx at 29. I was not in the hospital admitted as a teenager more then once.. for pneumonia, but over all had pneumonia 29 times.
I didn't have health insurance in my 20's at all till the end of my 20's.. so I was always seen in a clinc setting. I saw different doctors all the time, but I always had pneumonia, scaring, and infiltrates in my lungs.. ( at the time they because they were used to clinic patients only tested me for TB and HIV) but finally after being dx at 29 and starting the right meds.. My life is much better.
My lung function at the time of dx was much, much, much lower then it is now... Doing treatments and getting sputum cultures to treat my infections accordingly has done wonders for me.
I have a very active, to active actually life.. I am 34 I work full time plus hours as a Registered Nurse in an emergency room.. and really CF is not my most severe health problem I have going on right now.. Hard to believe but for now that is the way it is...
Jennifer
i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one
i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one
i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one
i was diagnosed when i was 3 and i didnt really take any antibiotics ,inhalers , my mum religiously done physio 3 times a day 20 minutes each but i had a lot of problems with my stomach from around 11 and had a gastrostemy put in when i was 13, now at 24 i take hypertonic saline , colomycin and a few other antibiotics i genuinly feel the way to keep ya lung function high is be very aggresive with treatment,physio 3 times a day never miss any inhalers etc but the downside of being so aggresive with treatment is you do feel tired and drained at doing so much treatment its a tough one