11 just found out i have cf
- Thread starter brematt
- Start date
Hey. My name is Ceci, I'm 18 and was diagnosed at age 14. Sounds like you are pretty healthy, just dealing with the digestive side of CF. CF affects people in different ways, it can manifest itself as digestive problems, lung problems and/or both. Most people here deal with both, but some of us just deal with one or the other. I deal with just the lung side of things. If you have any questions, feel free to ask. Welcome to the site. Hope that the dx helps you get your symptoms under control.
Ceci
Ceci
Hey. My name is Ceci, I'm 18 and was diagnosed at age 14. Sounds like you are pretty healthy, just dealing with the digestive side of CF. CF affects people in different ways, it can manifest itself as digestive problems, lung problems and/or both. Most people here deal with both, but some of us just deal with one or the other. I deal with just the lung side of things. If you have any questions, feel free to ask. Welcome to the site. Hope that the dx helps you get your symptoms under control.
Ceci
Ceci
Hey. My name is Ceci, I'm 18 and was diagnosed at age 14. Sounds like you are pretty healthy, just dealing with the digestive side of CF. CF affects people in different ways, it can manifest itself as digestive problems, lung problems and/or both. Most people here deal with both, but some of us just deal with one or the other. I deal with just the lung side of things. If you have any questions, feel free to ask. Welcome to the site. Hope that the dx helps you get your symptoms under control.
Ceci
Ceci
seahawkrock
New member
sorry now i'm on my knew one
seahawkrock
New member
sorry now i'm on my knew one
seahawkrock
New member
sorry now i'm on my knew one
cysticfibrosisgirl
New member
~Hey there~
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
cysticfibrosisgirl
New member
~Hey there~
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
cysticfibrosisgirl
New member
~Hey there~
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
I to was told I had CF at age 16. I had a sweat test that was false/nagitive. This menes that the test showed I did not have CF when I Do have Cystic Fibrosis.
I had my sweat test done at a CF center. But I do not get care at a CF center. I have my own CF center. What I mene by that is that I go to an inturnest that works with my CF care. I have a few different doctors my inturnest is the head doc. I am getting a new inturnest at a different clnic one that will be by a very big hospital. So when I need IV's and "Tune ups" I will be at a good hospital. I am on allot of meds everyday.
Pulozyme, Atrovent, Albuterol, Hypertonic Sline, Pulmicourt, Mucomist, Xopenex, TheVest airway clearance system, Nisoex, Predcid, UtraseMT20's 5 with snacks and 8 with meals, SourceCF ADEK's, Singulair 10mg, Fiber Sure in juce everyday,
Abilify for my mind, Cybultia also for my mind, Ensure as needed, blood sugers as needed.
I get sick allot. I get allot of infections and fevers. I get my blood taken allot becuase I have issues with by blood cloting. I have bad vains they are very hard to get blood from. Sometime soon I am hoping to get a crentral- line of port put in do to my bad vains.
I had allot of issues with sinus infections as a child. I also had issues with gaing weight I was thin and as a baby I was aways wanting food. I cryed allot I had issues going poop. Sometimes I could not poop for 4 weeks. And when I did end up pooping it was full of this yellow, thick mucus and oil.
In 1995 my doctor told my mom that I had malabsorption and that my body could not do anything with my food that I ate. In gread school I would go to gym and sometimes I would start coughing and coghing and my fingers would turn dark blue. I was given an Asthma albuterol inhaler for when that would happen and it never helped.
So then we know that this was not asthma. Then in 2002 I eneded up very very ill with my tummy and lungs. I could not keep any food down and I was pooping every 30mins and I was so sick. They tested me for everything! They could not find out what it was. So I had to go to the hospital they put in an IV and then asked me have you ever been put on enzymes the kind they give to people with Cystic Fibrosis? I said no never. That night I was given my first Creon20 enzymes! As soon as I went on them by pooping stoped! My tummy stoped being so fat! and then my tummy was fine! Now I take UtraseMT20's and I love them!
I had been on CF lung treatments before all the poop stuff started. The doctors have never seen my lungs so well with my treatments. But my Pft's are still low even so. 60%. I wish they where 100!
Anyway that's my CF story! Now we are trying to get rid of an infection. And hopefuly they will put me on Tobi or something soon.
19/w CF
~3+gram postive for cocci <img src="i/expressions/face-icon-small-confused.gif" border="0">
~ 1+gram postive for bacill
[L=Text]http://www.caringbridge.com/visit/karin1[/L
hey i'm robert i wasn't diagnosed with cf until i was 14, i had the digestive problems all my life and it just wasn't caught by my doctor, i got the lung problems when i was about 10 and my doctor still missed the cf, it wasn't until i was camping and got really sick from all the smoke i was around camping that my dr sent me to a pulmonologist who figured out the cf in about 5 minutes. i was really mad at my regular dr and don't go to him anymore, if he had found the cf a long time ago i might have been able to delay the onset of symptoms but what is done is done, although there is no excuse for missing it that long i forgive him and i'm just glad its diagnosed now and i'm getting treatment.
Being diagnosed with something like cf can be a real strain on your mental health, i had problems coping with it for about 6 months, just know that now you are being treated and hopefully feel better, you will become more comfortable with your cf as time goes on but don't let it get you down, its who you are and you shouldn't be ashamed about it.
If you need someone to talk to just send me a private message
Being diagnosed with something like cf can be a real strain on your mental health, i had problems coping with it for about 6 months, just know that now you are being treated and hopefully feel better, you will become more comfortable with your cf as time goes on but don't let it get you down, its who you are and you shouldn't be ashamed about it.
If you need someone to talk to just send me a private message