Should I be scared?

W

welshwitch

Guest
Hi gunelle,

I echo what has been said here, ESPECIALLY the points about how every case of CF is different. CF does not equal early death in every situation! There is no need to panic.

What you CAN do is arm yourself with as much information as possible. Engage with your doctor. (Perhaps find one that you can actually understand?) Learn about the new treatments, and ask your doctor is they are right for YOU and YOUR situation.

Most importantly, you know your body and what it is capable of. Just because you got this diagnosis does not mean that your body will automatically start to deteriorate. You have had this for 32 years; your body is used to this. You know yourself and what you are capable of. If you feel like you will live for a long time, you probably will.

Just be engaged, proactive, don't live in denial and enjoy your good health! I am blessed too with mild CF.
 
W

welshwitch

Guest
Hi gunelle,

I echo what has been said here, ESPECIALLY the points about how every case of CF is different. CF does not equal early death in every situation! There is no need to panic.

What you CAN do is arm yourself with as much information as possible. Engage with your doctor. (Perhaps find one that you can actually understand?) Learn about the new treatments, and ask your doctor is they are right for YOU and YOUR situation.

Most importantly, you know your body and what it is capable of. Just because you got this diagnosis does not mean that your body will automatically start to deteriorate. You have had this for 32 years; your body is used to this. You know yourself and what you are capable of. If you feel like you will live for a long time, you probably will.

Just be engaged, proactive, don't live in denial and enjoy your good health! I am blessed too with mild CF.
 
W

welshwitch

Guest
Hi gunelle,

I echo what has been said here, ESPECIALLY the points about how every case of CF is different. CF does not equal early death in every situation! There is no need to panic.

What you CAN do is arm yourself with as much information as possible. Engage with your doctor. (Perhaps find one that you can actually understand?) Learn about the new treatments, and ask your doctor is they are right for YOU and YOUR situation.

Most importantly, you know your body and what it is capable of. Just because you got this diagnosis does not mean that your body will automatically start to deteriorate. You have had this for 32 years; your body is used to this. You know yourself and what you are capable of. If you feel like you will live for a long time, you probably will.

Just be engaged, proactive, don't live in denial and enjoy your good health! I am blessed too with mild CF.
 
W

welshwitch

Guest
Hi gunelle,

I echo what has been said here, ESPECIALLY the points about how every case of CF is different. CF does not equal early death in every situation! There is no need to panic.

What you CAN do is arm yourself with as much information as possible. Engage with your doctor. (Perhaps find one that you can actually understand?) Learn about the new treatments, and ask your doctor is they are right for YOU and YOUR situation.

Most importantly, you know your body and what it is capable of. Just because you got this diagnosis does not mean that your body will automatically start to deteriorate. You have had this for 32 years; your body is used to this. You know yourself and what you are capable of. If you feel like you will live for a long time, you probably will.

Just be engaged, proactive, don't live in denial and enjoy your good health! I am blessed too with mild CF.
 
W

welshwitch

Guest
Hi gunelle,
<br />
<br />I echo what has been said here, ESPECIALLY the points about how every case of CF is different. CF does not equal early death in every situation! There is no need to panic.
<br />
<br />What you CAN do is arm yourself with as much information as possible. Engage with your doctor. (Perhaps find one that you can actually understand?) Learn about the new treatments, and ask your doctor is they are right for YOU and YOUR situation.
<br />
<br />Most importantly, you know your body and what it is capable of. Just because you got this diagnosis does not mean that your body will automatically start to deteriorate. You have had this for 32 years; your body is used to this. You know yourself and what you are capable of. If you feel like you will live for a long time, you probably will.
<br />
<br />Just be engaged, proactive, don't live in denial and enjoy your good health! I am blessed too with mild CF.
 
W

welshwitch

Guest
Oh, and you asked HOW CF is progressive. This is a question I asked myself for many years and was too scared to ask. But here are some things that MAY occur:

*decrease in lung function (but note that everyone, CF or not, goes down in lung function every year)
*increase resistance to antibiotics due to new bugs in your sputum, ie, people with CF sometimes get Pseudomonas and/or MRSA in their lungs--this will not necessarily lower lung function, but may cause more lung infections
*just being fatigued more
*needing to be on IV antibiotics

Now, more severe cases include being evaluated for lung transplants, being on oxygen, and decreased quality of life, ie, disability or constant lung infections.

But keep in mind that most of this is very subtle and I would not stress about it but I would be aware and keep track of what your body is doing.
 
W

welshwitch

Guest
Oh, and you asked HOW CF is progressive. This is a question I asked myself for many years and was too scared to ask. But here are some things that MAY occur:

*decrease in lung function (but note that everyone, CF or not, goes down in lung function every year)
*increase resistance to antibiotics due to new bugs in your sputum, ie, people with CF sometimes get Pseudomonas and/or MRSA in their lungs--this will not necessarily lower lung function, but may cause more lung infections
*just being fatigued more
*needing to be on IV antibiotics

Now, more severe cases include being evaluated for lung transplants, being on oxygen, and decreased quality of life, ie, disability or constant lung infections.

But keep in mind that most of this is very subtle and I would not stress about it but I would be aware and keep track of what your body is doing.
 
W

welshwitch

Guest
Oh, and you asked HOW CF is progressive. This is a question I asked myself for many years and was too scared to ask. But here are some things that MAY occur:

*decrease in lung function (but note that everyone, CF or not, goes down in lung function every year)
*increase resistance to antibiotics due to new bugs in your sputum, ie, people with CF sometimes get Pseudomonas and/or MRSA in their lungs--this will not necessarily lower lung function, but may cause more lung infections
*just being fatigued more
*needing to be on IV antibiotics

Now, more severe cases include being evaluated for lung transplants, being on oxygen, and decreased quality of life, ie, disability or constant lung infections.

But keep in mind that most of this is very subtle and I would not stress about it but I would be aware and keep track of what your body is doing.
 
W

welshwitch

Guest
Oh, and you asked HOW CF is progressive. This is a question I asked myself for many years and was too scared to ask. But here are some things that MAY occur:

*decrease in lung function (but note that everyone, CF or not, goes down in lung function every year)
*increase resistance to antibiotics due to new bugs in your sputum, ie, people with CF sometimes get Pseudomonas and/or MRSA in their lungs--this will not necessarily lower lung function, but may cause more lung infections
*just being fatigued more
*needing to be on IV antibiotics

Now, more severe cases include being evaluated for lung transplants, being on oxygen, and decreased quality of life, ie, disability or constant lung infections.

But keep in mind that most of this is very subtle and I would not stress about it but I would be aware and keep track of what your body is doing.
 
W

welshwitch

Guest
Oh, and you asked HOW CF is progressive. This is a question I asked myself for many years and was too scared to ask. But here are some things that MAY occur:
<br />
<br />*decrease in lung function (but note that everyone, CF or not, goes down in lung function every year)
<br />*increase resistance to antibiotics due to new bugs in your sputum, ie, people with CF sometimes get Pseudomonas and/or MRSA in their lungs--this will not necessarily lower lung function, but may cause more lung infections
<br />*just being fatigued more
<br />*needing to be on IV antibiotics
<br />
<br />Now, more severe cases include being evaluated for lung transplants, being on oxygen, and decreased quality of life, ie, disability or constant lung infections.
<br />
<br />But keep in mind that most of this is very subtle and I would not stress about it but I would be aware and keep track of what your body is doing.
 
B

blackchameleon

New member
get a regular exercise routine in place and dont forget to go hard and really get your lungs working. get plenty of sleep and have plenty of sex if possible. drink alot of pure water each day, at least 2-3 litres and gain an interest in a healthy diet with plenty of fresh fruit and veggies. keep your lungs clear each day and learn to listen to your "inner voice' and trust it. dont just accept a doctors prescribed medicine or treatment set up for you if your 'inner voice' has doubts, question him and then tell him what you think would work better if thats the case. never stop believing in yourself and pay no attention to predicted life expectancies or quality of life, make your own like me. and lastly, get out of the city if you live in one and move to the cleaner air in the country. cheers mate, Blacky
 
B

blackchameleon

New member
get a regular exercise routine in place and dont forget to go hard and really get your lungs working. get plenty of sleep and have plenty of sex if possible. drink alot of pure water each day, at least 2-3 litres and gain an interest in a healthy diet with plenty of fresh fruit and veggies. keep your lungs clear each day and learn to listen to your "inner voice' and trust it. dont just accept a doctors prescribed medicine or treatment set up for you if your 'inner voice' has doubts, question him and then tell him what you think would work better if thats the case. never stop believing in yourself and pay no attention to predicted life expectancies or quality of life, make your own like me. and lastly, get out of the city if you live in one and move to the cleaner air in the country. cheers mate, Blacky
 
B

blackchameleon

New member
get a regular exercise routine in place and dont forget to go hard and really get your lungs working. get plenty of sleep and have plenty of sex if possible. drink alot of pure water each day, at least 2-3 litres and gain an interest in a healthy diet with plenty of fresh fruit and veggies. keep your lungs clear each day and learn to listen to your "inner voice' and trust it. dont just accept a doctors prescribed medicine or treatment set up for you if your 'inner voice' has doubts, question him and then tell him what you think would work better if thats the case. never stop believing in yourself and pay no attention to predicted life expectancies or quality of life, make your own like me. and lastly, get out of the city if you live in one and move to the cleaner air in the country. cheers mate, Blacky
 
B

blackchameleon

New member
get a regular exercise routine in place and dont forget to go hard and really get your lungs working. get plenty of sleep and have plenty of sex if possible. drink alot of pure water each day, at least 2-3 litres and gain an interest in a healthy diet with plenty of fresh fruit and veggies. keep your lungs clear each day and learn to listen to your "inner voice' and trust it. dont just accept a doctors prescribed medicine or treatment set up for you if your 'inner voice' has doubts, question him and then tell him what you think would work better if thats the case. never stop believing in yourself and pay no attention to predicted life expectancies or quality of life, make your own like me. and lastly, get out of the city if you live in one and move to the cleaner air in the country. cheers mate, Blacky
 
B

blackchameleon

New member
get a regular exercise routine in place and dont forget to go hard and really get your lungs working. get plenty of sleep and have plenty of sex if possible. drink alot of pure water each day, at least 2-3 litres and gain an interest in a healthy diet with plenty of fresh fruit and veggies. keep your lungs clear each day and learn to listen to your "inner voice' and trust it. dont just accept a doctors prescribed medicine or treatment set up for you if your 'inner voice' has doubts, question him and then tell him what you think would work better if thats the case. never stop believing in yourself and pay no attention to predicted life expectancies or quality of life, make your own like me. and lastly, get out of the city if you live in one and move to the cleaner air in the country. cheers mate, Blacky
 
M

MicheleGazelle

New member
I was diagnosed with atypical ("mild") CF the month before I turned 36. Getting diagnosed helped me get healthier. But I think being diagnosed late was also a good thing in my case because it allowed me to figure out how to take care of myself without a lot of preconceived notions about what I "should" do. I find myself returning to some of the same things that helped me survive my childhood without a diagnosis, like eating lots of watermelon, but improving on it now that I have some understanding of what is going on and why stuff like that was so important. I'm much healthier now than I have ever been before.

Good luck.
 
M

MicheleGazelle

New member
I was diagnosed with atypical ("mild") CF the month before I turned 36. Getting diagnosed helped me get healthier. But I think being diagnosed late was also a good thing in my case because it allowed me to figure out how to take care of myself without a lot of preconceived notions about what I "should" do. I find myself returning to some of the same things that helped me survive my childhood without a diagnosis, like eating lots of watermelon, but improving on it now that I have some understanding of what is going on and why stuff like that was so important. I'm much healthier now than I have ever been before.

Good luck.
 
M

MicheleGazelle

New member
I was diagnosed with atypical ("mild") CF the month before I turned 36. Getting diagnosed helped me get healthier. But I think being diagnosed late was also a good thing in my case because it allowed me to figure out how to take care of myself without a lot of preconceived notions about what I "should" do. I find myself returning to some of the same things that helped me survive my childhood without a diagnosis, like eating lots of watermelon, but improving on it now that I have some understanding of what is going on and why stuff like that was so important. I'm much healthier now than I have ever been before.

Good luck.
 
M

MicheleGazelle

New member
I was diagnosed with atypical ("mild") CF the month before I turned 36. Getting diagnosed helped me get healthier. But I think being diagnosed late was also a good thing in my case because it allowed me to figure out how to take care of myself without a lot of preconceived notions about what I "should" do. I find myself returning to some of the same things that helped me survive my childhood without a diagnosis, like eating lots of watermelon, but improving on it now that I have some understanding of what is going on and why stuff like that was so important. I'm much healthier now than I have ever been before.

Good luck.
 
M

MicheleGazelle

New member
I was diagnosed with atypical ("mild") CF the month before I turned 36. Getting diagnosed helped me get healthier. But I think being diagnosed late was also a good thing in my case because it allowed me to figure out how to take care of myself without a lot of preconceived notions about what I "should" do. I find myself returning to some of the same things that helped me survive my childhood without a diagnosis, like eating lots of watermelon, but improving on it now that I have some understanding of what is going on and why stuff like that was so important. I'm much healthier now than I have ever been before.
<br />
<br />Good luck.
 
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