For all Cystic's in there 20's

[CFTEAMA]

I am 20 years old and I have CF. my mom had to take me to the ER allot as a baby becuase I was coughing and full of mucus down in lungs. The doctors would take me alway from my mom and but a tube down to my lungs to clean out the junk.

By the time I was 15 I was very sick and needed enzymes. When I was 8 to 12 I was sooo thin that I looked like I was going to die. I have severe issues with digesting my food and I have blowel blockages allot. I have lung infections about every 4 weeks. I also have Bronchiectasis and I am in reheab at the hospital 2 days a week and the rest of the week I walk with oxygen at the park for 15 to 20 mins. I do really well in reheab so far. Somtimes my sats do get a little low but not to bad.

So I have this new CF lung doctor and she was happy with my PFT's because they where 96% my pfts normaly are at 50 to 75% but I have been put on Tobi and some other new meds. So my lung doctor told me you seem to have a very mild case of CF. Most 20 year olds are very sick and waiting for new lungs! I said thats not always ture. I know allot of them who are my age and are just like me.

So I would like to know what you people with CF who are in your 20's are doing with your CF?? Are you all waiting for new lungs? or are you somewhat like me.

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20/w CF/Bronchiectasis DDF508

 

[CFTEAMA]

I am 20 years old and I have CF. my mom had to take me to the ER allot as a baby becuase I was coughing and full of mucus down in lungs. The doctors would take me alway from my mom and but a tube down to my lungs to clean out the junk.

By the time I was 15 I was very sick and needed enzymes. When I was 8 to 12 I was sooo thin that I looked like I was going to die. I have severe issues with digesting my food and I have blowel blockages allot. I have lung infections about every 4 weeks. I also have Bronchiectasis and I am in reheab at the hospital 2 days a week and the rest of the week I walk with oxygen at the park for 15 to 20 mins. I do really well in reheab so far. Somtimes my sats do get a little low but not to bad.

So I have this new CF lung doctor and she was happy with my PFT's because they where 96% my pfts normaly are at 50 to 75% but I have been put on Tobi and some other new meds. So my lung doctor told me you seem to have a very mild case of CF. Most 20 year olds are very sick and waiting for new lungs! I said thats not always ture. I know allot of them who are my age and are just like me.

So I would like to know what you people with CF who are in your 20's are doing with your CF?? Are you all waiting for new lungs? or are you somewhat like me.

------------------------------
20/w CF/Bronchiectasis DDF508

 

[CFTEAMA]

I am 20 years old and I have CF. my mom had to take me to the ER allot as a baby becuase I was coughing and full of mucus down in lungs. The doctors would take me alway from my mom and but a tube down to my lungs to clean out the junk.

By the time I was 15 I was very sick and needed enzymes. When I was 8 to 12 I was sooo thin that I looked like I was going to die. I have severe issues with digesting my food and I have blowel blockages allot. I have lung infections about every 4 weeks. I also have Bronchiectasis and I am in reheab at the hospital 2 days a week and the rest of the week I walk with oxygen at the park for 15 to 20 mins. I do really well in reheab so far. Somtimes my sats do get a little low but not to bad.

So I have this new CF lung doctor and she was happy with my PFT's because they where 96% my pfts normaly are at 50 to 75% but I have been put on Tobi and some other new meds. So my lung doctor told me you seem to have a very mild case of CF. Most 20 year olds are very sick and waiting for new lungs! I said thats not always ture. I know allot of them who are my age and are just like me.

So I would like to know what you people with CF who are in your 20's are doing with your CF?? Are you all waiting for new lungs? or are you somewhat like me.

------------------------------
20/w CF/Bronchiectasis DDF508

 

[CFTEAMA]

I am 20 years old and I have CF. my mom had to take me to the ER allot as a baby becuase I was coughing and full of mucus down in lungs. The doctors would take me alway from my mom and but a tube down to my lungs to clean out the junk.

By the time I was 15 I was very sick and needed enzymes. When I was 8 to 12 I was sooo thin that I looked like I was going to die. I have severe issues with digesting my food and I have blowel blockages allot. I have lung infections about every 4 weeks. I also have Bronchiectasis and I am in reheab at the hospital 2 days a week and the rest of the week I walk with oxygen at the park for 15 to 20 mins. I do really well in reheab so far. Somtimes my sats do get a little low but not to bad.

So I have this new CF lung doctor and she was happy with my PFT's because they where 96% my pfts normaly are at 50 to 75% but I have been put on Tobi and some other new meds. So my lung doctor told me you seem to have a very mild case of CF. Most 20 year olds are very sick and waiting for new lungs! I said thats not always ture. I know allot of them who are my age and are just like me.

So I would like to know what you people with CF who are in your 20's are doing with your CF?? Are you all waiting for new lungs? or are you somewhat like me.

------------------------------
20/w CF/Bronchiectasis DDF508

 

[CFTEAMA]

I am 20 years old and I have CF. my mom had to take me to the ER allot as a baby becuase I was coughing and full of mucus down in lungs. The doctors would take me alway from my mom and but a tube down to my lungs to clean out the junk.
<br />
<br />By the time I was 15 I was very sick and needed enzymes. When I was 8 to 12 I was sooo thin that I looked like I was going to die. I have severe issues with digesting my food and I have blowel blockages allot. I have lung infections about every 4 weeks. I also have Bronchiectasis and I am in reheab at the hospital 2 days a week and the rest of the week I walk with oxygen at the park for 15 to 20 mins. I do really well in reheab so far. Somtimes my sats do get a little low but not to bad.
<br />
<br />So I have this new CF lung doctor and she was happy with my PFT's because they where 96% my pfts normaly are at 50 to 75% but I have been put on Tobi and some other new meds. So my lung doctor told me you seem to have a very mild case of CF. Most 20 year olds are very sick and waiting for new lungs! I said thats not always ture. I know allot of them who are my age and are just like me.
<br />
<br />So I would like to know what you people with CF who are in your 20's are doing with your CF?? Are you all waiting for new lungs? or are you somewhat like me.
<br />
<br />------------------------------
<br />20/w CF/Bronchiectasis DDF508
<br />

 

[JazzysMom]

I am old enough to be your MOther (boy that sounds funny LOL), but I can say that this doctor is totally wrong.

YES there are CFers that are very sick early on & need tx at an early age. BUT there are many, many that dont need tx until much much later.

I am glad to hear that the lack of care over the years didnt take a severe toll on your lungs yet. Keep up the good care because it does get harder to maintain your health as you get older.

BTW my lung function in my twenties ranged from high 80's to low 90's. It wasnt until after my daughter was born & I was getting older that things took a real nose dive.

I was very non compliant most of my life also which is why I emphasize keeping your health at bay as much as possible now.

 

[JazzysMom]

I am old enough to be your MOther (boy that sounds funny LOL), but I can say that this doctor is totally wrong.

YES there are CFers that are very sick early on & need tx at an early age. BUT there are many, many that dont need tx until much much later.

I am glad to hear that the lack of care over the years didnt take a severe toll on your lungs yet. Keep up the good care because it does get harder to maintain your health as you get older.

BTW my lung function in my twenties ranged from high 80's to low 90's. It wasnt until after my daughter was born & I was getting older that things took a real nose dive.

I was very non compliant most of my life also which is why I emphasize keeping your health at bay as much as possible now.

 

[JazzysMom]

I am old enough to be your MOther (boy that sounds funny LOL), but I can say that this doctor is totally wrong.

YES there are CFers that are very sick early on & need tx at an early age. BUT there are many, many that dont need tx until much much later.

I am glad to hear that the lack of care over the years didnt take a severe toll on your lungs yet. Keep up the good care because it does get harder to maintain your health as you get older.

BTW my lung function in my twenties ranged from high 80's to low 90's. It wasnt until after my daughter was born & I was getting older that things took a real nose dive.

I was very non compliant most of my life also which is why I emphasize keeping your health at bay as much as possible now.

 

[JazzysMom]

I am old enough to be your MOther (boy that sounds funny LOL), but I can say that this doctor is totally wrong.

YES there are CFers that are very sick early on & need tx at an early age. BUT there are many, many that dont need tx until much much later.

I am glad to hear that the lack of care over the years didnt take a severe toll on your lungs yet. Keep up the good care because it does get harder to maintain your health as you get older.

BTW my lung function in my twenties ranged from high 80's to low 90's. It wasnt until after my daughter was born & I was getting older that things took a real nose dive.

I was very non compliant most of my life also which is why I emphasize keeping your health at bay as much as possible now.

 

[JazzysMom]

I am old enough to be your MOther (boy that sounds funny LOL), but I can say that this doctor is totally wrong.
<br />
<br />YES there are CFers that are very sick early on & need tx at an early age. BUT there are many, many that dont need tx until much much later.
<br />
<br />I am glad to hear that the lack of care over the years didnt take a severe toll on your lungs yet. Keep up the good care because it does get harder to maintain your health as you get older.
<br />
<br />BTW my lung function in my twenties ranged from high 80's to low 90's. It wasnt until after my daughter was born & I was getting older that things took a real nose dive.
<br />
<br />I was very non compliant most of my life also which is why I emphasize keeping your health at bay as much as possible now.
<br />
<br />

 

[Scottius]

I am past my twenties, but I think you might want to get a new doctor. First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.

However that being said, I am still happy that your pft's are so high, and hope they stay that way.

 

[Scottius]

I am past my twenties, but I think you might want to get a new doctor. First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.

However that being said, I am still happy that your pft's are so high, and hope they stay that way.

 

[Scottius]

I am past my twenties, but I think you might want to get a new doctor. First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.

However that being said, I am still happy that your pft's are so high, and hope they stay that way.

 

[Scottius]

I am past my twenties, but I think you might want to get a new doctor. First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.

However that being said, I am still happy that your pft's are so high, and hope they stay that way.

 

[Scottius]

I am past my twenties, but I think you might want to get a new doctor. First of all, her comment about most 20 year old cfers being very sick is at least 20 years out of date. Also, her prognosis that you have a "mild" case of cf might lead her to not treat you as seriously as someone with a more advanced form. A mild case can turn into a serious case very quickly, and a doctor who isn't vigilant can only make things worse.
<br />
<br />However that being said, I am still happy that your pft's are so high, and hope they stay that way.

 

[miesl]

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?

My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.

Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.

 

[miesl]

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?

My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.

Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.

 

[miesl]

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?

My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.

Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.

 

[miesl]

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?

My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.

Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.

 

[miesl]

Am I the only one concerned by the fact she is on oxygen to take walks with PFTs at 96%?
<br />
<br />My husband is 30 and his baseline is 65% for FEV1, 80% for FVC and he runs and backpacks... no O2 required.
<br />
<br />Anyone who says you have "very mild CF" while you need 02 for walking has no idea what they are talking about. You seriously need a new doctor. There is something not right about this at all.
<br />