Adults, tell me about your health as a child

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

rcq925

New member
I have a 3 year old daughter, Hayley, who has CF. She has been through a lot already at three years old. She had a Nissen Fundoplication (stomach wrap) at 3 months due to severe reflux causing her to aspirate into her lungs. She has been on IV meds already 4 times. She has been hospitalized 5 times already. SHe cultured PA once in July 2006, I inisisted on IV's and she has not cultured it since (but I do realize it could still be there!) She normally cultures Heamophilius Parainfluenza (H-Flu) and sometimes regular staph. When she is not sick, she does really well. We are very agressive with her treatments, vest 3 times per day for 30 minutes. Xopenex three times per day, Pulmozyme once per day, Flovent inhaler, nasonex, zyrtec, vitamax, Creon 5, ect.

My questions is how did all of you do through your childhoods? More and more I see posts from Cfer's that are in their late twenties, thirties and older. This is fantastic, but I am wondering how many of you were adult diagnosis, how many had a rough start young in life but then bounced back and did well for a number of years?

I have just been so depressed lately reading about all the young kids that are on the list for transplants. I just heard recently of a 9year old and a 13 year old. We spend so much time hearing that the median age is 37 for CF patients, but that means that 50 percent of CFers don't make it to age 37. I am very well aware of this and it scares me!

So tell me how you health was through your childhood if you wouldn't mind sharing! Thanks in advance!
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

Emily65Roses

New member
I had abdominal surgery to remove a blockage when I was 2 days old, and that's when I was dx. I had sinus surgery when I was 5. I did nebs from age 9 on (it would've been sooner, but that's when the med came out). My parents beat me from a very young age. I always coughed and had to take care of my lungs, but they weren't a huge problem until later. My digestion was <b>always</b> a problem. Diarrhea, constipation (I had several rectal prolapses as a child, my parents got so used to it, they would just put on a glove and fix it themselves), gas, the whole deal. I've always been on enzymes and I've been on vitamins as long as they've had CF-special ones.

My lungs became a real issue when I was 16 (that was the first time I was on IVs). I got MRSA that year, and have since then been on IVs once or twice a year every year. The MRSA no longer acts up, but since I cultured MRSA, the PA moved right in and set up camp. I got a port placed at 18. My PFTs were in the 90-100% range until that year (the MRSA made them 44%). I went on IVs, and they popped back up to the 90% range. But they have since gone down a bit here and there. I'm currently hovering fairly steadily around 70% (the last 2 years or so have been pretty stable at 70%). Oh, and I'm 23 now.

If I missed anything, ask away, and I'll come back and see what I can add to it.
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

barbc888

New member
Hi Becky,

My CF was always considered "moderate", and I was diagnosed at birth. I spent the 1st year of my lfe in the hospital, dealing with meconium ileus and other CF-related things. But after a rough start in life, I did pretty well as a kid. I didn't start doing treatments until I was in my 20's and was seeing a CF specialist for the 1st time in my life.

I think you're on the right track and doing all you can for your daughter, which is great. There's only so much you can do... this disease will progress the way it wants to, and you just have to keep fighting. I don't have kids myself, but I can see how it's hard to watch her struggle and deal with all this stuff at such a young age. I'll be she's one tough cookie!

Take care,

Barbara
40 w/CF & CFRD
 

LouLou

New member
I had pneumonia and constant "colds" before the age of 2.5 years when I was diagnosed. The diagnosis was delayed that long because I was so healthy looking (chubby). Even with a positive sweat test doctors said it wasn't possible. I had bowel movement issues - messy, messy diapers. My mom tells me a story when she just had to get out of the house, took me to the mall which was a bit of a drive. She went to get me out of the car seat and I was covered in poop all the way to my armpits. So I pretty much had it all - digestive and lung involvement from a young age.

I had a small pneumonia again at age 5 but wasn't hospitalized - oral antibiotics and extra pt. Then no hospitalizations until age 19 and since then....none other than getting my gallbladder out in '04 for which I didn't even stay overnight (I have bad hospital-phobia).

Preventative care is why I'm so healthy today.
 

LouLou

New member
I had pneumonia and constant "colds" before the age of 2.5 years when I was diagnosed. The diagnosis was delayed that long because I was so healthy looking (chubby). Even with a positive sweat test doctors said it wasn't possible. I had bowel movement issues - messy, messy diapers. My mom tells me a story when she just had to get out of the house, took me to the mall which was a bit of a drive. She went to get me out of the car seat and I was covered in poop all the way to my armpits. So I pretty much had it all - digestive and lung involvement from a young age.

I had a small pneumonia again at age 5 but wasn't hospitalized - oral antibiotics and extra pt. Then no hospitalizations until age 19 and since then....none other than getting my gallbladder out in '04 for which I didn't even stay overnight (I have bad hospital-phobia).

Preventative care is why I'm so healthy today.
 
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