The Sweet And The Sour...

[JonJon8320]

My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.

Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.

My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.

We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?

I'm just rambling at this point, but it feels good to do so.

I appreciate the thoughts and comments.

- Jonathan

 

[JonJon8320]

My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.

Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.

My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.

We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?

I'm just rambling at this point, but it feels good to do so.

I appreciate the thoughts and comments.

- Jonathan

 

[JonJon8320]

My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.

Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.

My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.

We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?

I'm just rambling at this point, but it feels good to do so.

I appreciate the thoughts and comments.

- Jonathan

 

[JonJon8320]

My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.

Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.

My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.

We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?

I'm just rambling at this point, but it feels good to do so.

I appreciate the thoughts and comments.

- Jonathan

 

[JonJon8320]

My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.
<br />
<br />Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.
<br />
<br />My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.
<br />
<br />We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?
<br />
<br />I'm just rambling at this point, but it feels good to do so.
<br />
<br />I appreciate the thoughts and comments.
<br />
<br />- Jonathan

 

[Ratatosk]

Unfortunately, we've probably all gone thru similar emotions and experiences. I was terrified that DS would end up back in the NICU, wouldn't be able to have a normal childhood because he might get sick. Gradually we adjusted, became a bit more confident. First time he got an ear infection, cold, stomach flu was a bit scary, but we got thru it. Got into a routine with treaments.

I still get nervous -- right now DS has a little bit of a a cough and I worry about all the what ifs. We just try to take it one step at a time.

 

[Ratatosk]

Unfortunately, we've probably all gone thru similar emotions and experiences. I was terrified that DS would end up back in the NICU, wouldn't be able to have a normal childhood because he might get sick. Gradually we adjusted, became a bit more confident. First time he got an ear infection, cold, stomach flu was a bit scary, but we got thru it. Got into a routine with treaments.

I still get nervous -- right now DS has a little bit of a a cough and I worry about all the what ifs. We just try to take it one step at a time.

 

[Ratatosk]

Unfortunately, we've probably all gone thru similar emotions and experiences. I was terrified that DS would end up back in the NICU, wouldn't be able to have a normal childhood because he might get sick. Gradually we adjusted, became a bit more confident. First time he got an ear infection, cold, stomach flu was a bit scary, but we got thru it. Got into a routine with treaments.

I still get nervous -- right now DS has a little bit of a a cough and I worry about all the what ifs. We just try to take it one step at a time.

 

[Ratatosk]

Unfortunately, we've probably all gone thru similar emotions and experiences. I was terrified that DS would end up back in the NICU, wouldn't be able to have a normal childhood because he might get sick. Gradually we adjusted, became a bit more confident. First time he got an ear infection, cold, stomach flu was a bit scary, but we got thru it. Got into a routine with treaments.

I still get nervous -- right now DS has a little bit of a a cough and I worry about all the what ifs. We just try to take it one step at a time.

 

[Ratatosk]

Unfortunately, we've probably all gone thru similar emotions and experiences. I was terrified that DS would end up back in the NICU, wouldn't be able to have a normal childhood because he might get sick. Gradually we adjusted, became a bit more confident. First time he got an ear infection, cold, stomach flu was a bit scary, but we got thru it. Got into a routine with treaments.
<br />
<br />I still get nervous -- right now DS has a little bit of a a cough and I worry about all the what ifs. We just try to take it one step at a time.

 

[JonJon8320]

Thanks Ratatosk. I was so out of it even when writing the post I didn't mention the point of the name. We take the CF news as sour, but we know to appreciate every sweet moment together, because the sour will make the sweet even sweeter.

 

[JonJon8320]

Thanks Ratatosk. I was so out of it even when writing the post I didn't mention the point of the name. We take the CF news as sour, but we know to appreciate every sweet moment together, because the sour will make the sweet even sweeter.

 

[JonJon8320]

Thanks Ratatosk. I was so out of it even when writing the post I didn't mention the point of the name. We take the CF news as sour, but we know to appreciate every sweet moment together, because the sour will make the sweet even sweeter.

 

[JonJon8320]

Thanks Ratatosk. I was so out of it even when writing the post I didn't mention the point of the name. We take the CF news as sour, but we know to appreciate every sweet moment together, because the sour will make the sweet even sweeter.

 

[JonJon8320]

Thanks Ratatosk. I was so out of it even when writing the post I didn't mention the point of the name. We take the CF news as sour, but we know to appreciate every sweet moment together, because the sour will make the sweet even sweeter.

 

[just1more]

First of all welcome, I hope you are able to find a place here as we need more cf-dad's (my opinion as one of the very few). This is a great site and one that can be very helpful.

As for your questions, no unfortunately there is no way to know how long life will be, and when people will decline. While mutations can be indicative of some general themes; they don't guarantee anything.


You asked for a realistic picture, so I'll try to give an 'example' of what life with CF COULD be like. This is just an example, nothing more:

CF is progressive, so you will start out fairly ok; with many treatments to help delay/prevent issues. These include enzymes/vitamins to help with the fact your son's pancrease doesn't produce enough (or any) enzymes to digest fat. In addition, breathing treatments to help clear mucus and any *bugs* that might be lurking in his lungs.

If his GI issues become an issue with weight control over the years, you will change enzymes, supplement his diet, and in some cases use a g-tube (button on abs that connects to stomach) to increase his calories. Studies have shown that a healthy weight is vital to lung health in cystics.

Over time he will likely begin to have more mucous production, and will ultimately culture his first infection. Depending on what it is you will try antibiotics; most of the time oral followed by IV's if the oral fails to control it.

This cycle will repeat, periods of maintenance care followed by infections, called exacerbations, requiring abx.

Over time the period between exacerbations will shrink, new bugs will be growing that are more damaging to the lungs.

As CF runs it's course, ultimately the lungs will begin to fail. For some a transplant is an option/choice to extend life; for others the transplant doesn't occur for numerous reasons.


For most with typical CF this is the high-level progression. It changes from person-to-person but the biggest variable is the time between phases.

Active on the site we have a member who's son recently had a successful lung transplant at 7, members who reach that point in their 20's (most common) and a few living in their 40's and beyond with their original lungs.

I hope I was able to answer your questions. If you have more, free free to post them or send me a PM (icon in top right of post that looks like a cartoon caption).

 

[just1more]

First of all welcome, I hope you are able to find a place here as we need more cf-dad's (my opinion as one of the very few). This is a great site and one that can be very helpful.

As for your questions, no unfortunately there is no way to know how long life will be, and when people will decline. While mutations can be indicative of some general themes; they don't guarantee anything.


You asked for a realistic picture, so I'll try to give an 'example' of what life with CF COULD be like. This is just an example, nothing more:

CF is progressive, so you will start out fairly ok; with many treatments to help delay/prevent issues. These include enzymes/vitamins to help with the fact your son's pancrease doesn't produce enough (or any) enzymes to digest fat. In addition, breathing treatments to help clear mucus and any *bugs* that might be lurking in his lungs.

If his GI issues become an issue with weight control over the years, you will change enzymes, supplement his diet, and in some cases use a g-tube (button on abs that connects to stomach) to increase his calories. Studies have shown that a healthy weight is vital to lung health in cystics.

Over time he will likely begin to have more mucous production, and will ultimately culture his first infection. Depending on what it is you will try antibiotics; most of the time oral followed by IV's if the oral fails to control it.

This cycle will repeat, periods of maintenance care followed by infections, called exacerbations, requiring abx.

Over time the period between exacerbations will shrink, new bugs will be growing that are more damaging to the lungs.

As CF runs it's course, ultimately the lungs will begin to fail. For some a transplant is an option/choice to extend life; for others the transplant doesn't occur for numerous reasons.


For most with typical CF this is the high-level progression. It changes from person-to-person but the biggest variable is the time between phases.

Active on the site we have a member who's son recently had a successful lung transplant at 7, members who reach that point in their 20's (most common) and a few living in their 40's and beyond with their original lungs.

I hope I was able to answer your questions. If you have more, free free to post them or send me a PM (icon in top right of post that looks like a cartoon caption).

 

[just1more]

First of all welcome, I hope you are able to find a place here as we need more cf-dad's (my opinion as one of the very few). This is a great site and one that can be very helpful.

As for your questions, no unfortunately there is no way to know how long life will be, and when people will decline. While mutations can be indicative of some general themes; they don't guarantee anything.


You asked for a realistic picture, so I'll try to give an 'example' of what life with CF COULD be like. This is just an example, nothing more:

CF is progressive, so you will start out fairly ok; with many treatments to help delay/prevent issues. These include enzymes/vitamins to help with the fact your son's pancrease doesn't produce enough (or any) enzymes to digest fat. In addition, breathing treatments to help clear mucus and any *bugs* that might be lurking in his lungs.

If his GI issues become an issue with weight control over the years, you will change enzymes, supplement his diet, and in some cases use a g-tube (button on abs that connects to stomach) to increase his calories. Studies have shown that a healthy weight is vital to lung health in cystics.

Over time he will likely begin to have more mucous production, and will ultimately culture his first infection. Depending on what it is you will try antibiotics; most of the time oral followed by IV's if the oral fails to control it.

This cycle will repeat, periods of maintenance care followed by infections, called exacerbations, requiring abx.

Over time the period between exacerbations will shrink, new bugs will be growing that are more damaging to the lungs.

As CF runs it's course, ultimately the lungs will begin to fail. For some a transplant is an option/choice to extend life; for others the transplant doesn't occur for numerous reasons.


For most with typical CF this is the high-level progression. It changes from person-to-person but the biggest variable is the time between phases.

Active on the site we have a member who's son recently had a successful lung transplant at 7, members who reach that point in their 20's (most common) and a few living in their 40's and beyond with their original lungs.

I hope I was able to answer your questions. If you have more, free free to post them or send me a PM (icon in top right of post that looks like a cartoon caption).

 

[just1more]

First of all welcome, I hope you are able to find a place here as we need more cf-dad's (my opinion as one of the very few). This is a great site and one that can be very helpful.

As for your questions, no unfortunately there is no way to know how long life will be, and when people will decline. While mutations can be indicative of some general themes; they don't guarantee anything.


You asked for a realistic picture, so I'll try to give an 'example' of what life with CF COULD be like. This is just an example, nothing more:

CF is progressive, so you will start out fairly ok; with many treatments to help delay/prevent issues. These include enzymes/vitamins to help with the fact your son's pancrease doesn't produce enough (or any) enzymes to digest fat. In addition, breathing treatments to help clear mucus and any *bugs* that might be lurking in his lungs.

If his GI issues become an issue with weight control over the years, you will change enzymes, supplement his diet, and in some cases use a g-tube (button on abs that connects to stomach) to increase his calories. Studies have shown that a healthy weight is vital to lung health in cystics.

Over time he will likely begin to have more mucous production, and will ultimately culture his first infection. Depending on what it is you will try antibiotics; most of the time oral followed by IV's if the oral fails to control it.

This cycle will repeat, periods of maintenance care followed by infections, called exacerbations, requiring abx.

Over time the period between exacerbations will shrink, new bugs will be growing that are more damaging to the lungs.

As CF runs it's course, ultimately the lungs will begin to fail. For some a transplant is an option/choice to extend life; for others the transplant doesn't occur for numerous reasons.


For most with typical CF this is the high-level progression. It changes from person-to-person but the biggest variable is the time between phases.

Active on the site we have a member who's son recently had a successful lung transplant at 7, members who reach that point in their 20's (most common) and a few living in their 40's and beyond with their original lungs.

I hope I was able to answer your questions. If you have more, free free to post them or send me a PM (icon in top right of post that looks like a cartoon caption).

 

[just1more]

First of all welcome, I hope you are able to find a place here as we need more cf-dad's (my opinion as one of the very few). This is a great site and one that can be very helpful.
<br />
<br />As for your questions, no unfortunately there is no way to know how long life will be, and when people will decline. While mutations can be indicative of some general themes; they don't guarantee anything.
<br />
<br />
<br />You asked for a realistic picture, so I'll try to give an 'example' of what life with CF COULD be like. This is just an example, nothing more:
<br />
<br />CF is progressive, so you will start out fairly ok; with many treatments to help delay/prevent issues. These include enzymes/vitamins to help with the fact your son's pancrease doesn't produce enough (or any) enzymes to digest fat. In addition, breathing treatments to help clear mucus and any *bugs* that might be lurking in his lungs.
<br />
<br />If his GI issues become an issue with weight control over the years, you will change enzymes, supplement his diet, and in some cases use a g-tube (button on abs that connects to stomach) to increase his calories. Studies have shown that a healthy weight is vital to lung health in cystics.
<br />
<br />Over time he will likely begin to have more mucous production, and will ultimately culture his first infection. Depending on what it is you will try antibiotics; most of the time oral followed by IV's if the oral fails to control it.
<br />
<br />This cycle will repeat, periods of maintenance care followed by infections, called exacerbations, requiring abx.
<br />
<br />Over time the period between exacerbations will shrink, new bugs will be growing that are more damaging to the lungs.
<br />
<br />As CF runs it's course, ultimately the lungs will begin to fail. For some a transplant is an option/choice to extend life; for others the transplant doesn't occur for numerous reasons.
<br />
<br />
<br />For most with typical CF this is the high-level progression. It changes from person-to-person but the biggest variable is the time between phases.
<br />
<br />Active on the site we have a member who's son recently had a successful lung transplant at 7, members who reach that point in their 20's (most common) and a few living in their 40's and beyond with their original lungs.
<br />
<br />I hope I was able to answer your questions. If you have more, free free to post them or send me a PM (icon in top right of post that looks like a cartoon caption).