What is haunting me now, 1 month after dx, is how cf will progress for my son. On one hand, he's been healthy enough to not get dx for 11 years. His symptoms have mainly been related to pancreatic insufficiency. So we are dealing with the ill effects of 11 yrs of vitamin deficiencies and malabsorption. On the other hand, he's missed 11 yrs of preventative treatment. I think that the lung problems are just starting. He's been sick more than usual over the last year and his xray showed some damage "consistant with cf", accord. to the cf dr. I've read that not all cf patients have pancreatic insufficiency, but eventually all will have some variation of lung problems. Can anyone share with me how lung problems have progressed in your situation? Is there a direct relation btw age of onset of lung probs and severity of lung probs? In other words, b/c my son's lung probs are "mild" at age 11, can I expect his progression to be slow, and continue to be "mild" (as long as we continue with ACT/CPT)? Thanks for your thoughts.
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Progression of symptoms
- Thread starter brematt
- Start date
What is haunting me now, 1 month after dx, is how cf will progress for my son. On one hand, he's been healthy enough to not get dx for 11 years. His symptoms have mainly been related to pancreatic insufficiency. So we are dealing with the ill effects of 11 yrs of vitamin deficiencies and malabsorption. On the other hand, he's missed 11 yrs of preventative treatment. I think that the lung problems are just starting. He's been sick more than usual over the last year and his xray showed some damage "consistant with cf", accord. to the cf dr. I've read that not all cf patients have pancreatic insufficiency, but eventually all will have some variation of lung problems. Can anyone share with me how lung problems have progressed in your situation? Is there a direct relation btw age of onset of lung probs and severity of lung probs? In other words, b/c my son's lung probs are "mild" at age 11, can I expect his progression to be slow, and continue to be "mild" (as long as we continue with ACT/CPT)? Thanks for your thoughts.
What is haunting me now, 1 month after dx, is how cf will progress for my son. On one hand, he's been healthy enough to not get dx for 11 years. His symptoms have mainly been related to pancreatic insufficiency. So we are dealing with the ill effects of 11 yrs of vitamin deficiencies and malabsorption. On the other hand, he's missed 11 yrs of preventative treatment. I think that the lung problems are just starting. He's been sick more than usual over the last year and his xray showed some damage "consistant with cf", accord. to the cf dr. I've read that not all cf patients have pancreatic insufficiency, but eventually all will have some variation of lung problems. Can anyone share with me how lung problems have progressed in your situation? Is there a direct relation btw age of onset of lung probs and severity of lung probs? In other words, b/c my son's lung probs are "mild" at age 11, can I expect his progression to be slow, and continue to be "mild" (as long as we continue with ACT/CPT)? Thanks for your thoughts.
I wish I could give you definite answers and especially the ones you are hoping for but I cant. I was "mild" as a child. Being dx at 7 & only suffering from digestive issues at the time. I was able to "get away" with not feeling the immediate affects of CF when I didnt do my treatments during my childhood & ealry adulthood. I did go into the hospital and never let CF run my life for most of my life. In the last few years I have to say that my CF has progressed quite a bit. I can feel it immediately if I slack on my treatments & it takes a lot more to bounce back after an exacerbation. The fact that your son was dx late & hasnt had a lot of lung issues yet is a good sign, but sadly not a guarantee. I had responded in a post with simila thoughts & basically even the most compliant CFer needs a bit of luck along with the perfect environment & attitude to keep things smooth. All you can do is the best that you can. One day last year when I was having severe problems, my daughter asked why I was having such problems & going into the hospital & being on iv's so much if I did what I was suppose to. The simple answer....thats just how CF works at times.
I wish I could give you definite answers and especially the ones you are hoping for but I cant. I was "mild" as a child. Being dx at 7 & only suffering from digestive issues at the time. I was able to "get away" with not feeling the immediate affects of CF when I didnt do my treatments during my childhood & ealry adulthood. I did go into the hospital and never let CF run my life for most of my life. In the last few years I have to say that my CF has progressed quite a bit. I can feel it immediately if I slack on my treatments & it takes a lot more to bounce back after an exacerbation. The fact that your son was dx late & hasnt had a lot of lung issues yet is a good sign, but sadly not a guarantee. I had responded in a post with simila thoughts & basically even the most compliant CFer needs a bit of luck along with the perfect environment & attitude to keep things smooth. All you can do is the best that you can. One day last year when I was having severe problems, my daughter asked why I was having such problems & going into the hospital & being on iv's so much if I did what I was suppose to. The simple answer....thats just how CF works at times.
I wish I could give you definite answers and especially the ones you are hoping for but I cant. I was "mild" as a child. Being dx at 7 & only suffering from digestive issues at the time. I was able to "get away" with not feeling the immediate affects of CF when I didnt do my treatments during my childhood & ealry adulthood. I did go into the hospital and never let CF run my life for most of my life. In the last few years I have to say that my CF has progressed quite a bit. I can feel it immediately if I slack on my treatments & it takes a lot more to bounce back after an exacerbation. The fact that your son was dx late & hasnt had a lot of lung issues yet is a good sign, but sadly not a guarantee. I had responded in a post with simila thoughts & basically even the most compliant CFer needs a bit of luck along with the perfect environment & attitude to keep things smooth. All you can do is the best that you can. One day last year when I was having severe problems, my daughter asked why I was having such problems & going into the hospital & being on iv's so much if I did what I was suppose to. The simple answer....thats just how CF works at times.
I have to pretty much ditto a lot of what Melissa said -- it's so hard to give you a clear cut answer. We have all asked ourselves and our doctors that same question and nobody can tell you for sure. It is very much a "by the day, month, or year" at a time kind of thing.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
I have to pretty much ditto a lot of what Melissa said -- it's so hard to give you a clear cut answer. We have all asked ourselves and our doctors that same question and nobody can tell you for sure. It is very much a "by the day, month, or year" at a time kind of thing.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
I have to pretty much ditto a lot of what Melissa said -- it's so hard to give you a clear cut answer. We have all asked ourselves and our doctors that same question and nobody can tell you for sure. It is very much a "by the day, month, or year" at a time kind of thing.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
But having said all of that, it always "seems" to me that the longer you go with the least amount of symptoms is just better all the way around.
You can check out my blog page for the full story and a recent update, but the short version goes like this:
My kids were late diagnosis too. My daughter at age 14. My son at age 18.
They are both pancreatic sufficient.
My son is virtually symptom free still at age 20 (although tests do show some lung issues, they aren't anything to get too excited about and he does not do any treatments)
My daughter has the best lung function at age 18 than she has ever had (almost all her numbers are above normal) thanks to Pulmozyme, Albuteral, 7% Saline & The Vest. Along with a lot of hard work on her part to keep herself healthy (learning not to over do things, getting plenty of rest, using hand sanitizer so she doesn't pick up a cold virus from others etc.)
While this may not be accurate for others (and may not even come true for us) our doctor did make the statement (and yes he gave us the disclaimer first) but he said when she was 14 years old, we might be measuring the progression of her disease in "decades" rather than "years" like they sometimes see in the more "classic CF" cases.
Since her diagnosis 4-5 years ago, I'd have to say he has been correct so far. Her lung function has increased, not decreased and we have not had a "change of status" yet.
From what I read about many people on here and on another website, it seems that many people say they were in really good shape most of their childhood and early adult life - it was when they got to their 20's or 30's when they started to see a larger change - some people say they feel it happened when a combination of things changed in their lives, like going to college, burning the candle at both ends, quit exercising, slacked off on meds etc. Other's say nothing changed, they just got slammed with problems even though they were doing the best they could.
We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get.
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get.
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
We are only 4 months into our diagnosis so I can't answer your question directly. However, I felt compelled to respond that you are right where I was about a month into our dx. And that is - I wanted an answer as to how bad it will get.
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
Its an incredibly strange position to be in. We are GRIEVING, but yet we don't really have a definite thing to be grieving for. Nobody died; no one has '6 months to live'. What we have is a snapshot into what the future could be like.....or what it COULDN'T be like. We are told to FOCUS on the POSITIVE, yet forced to live in the reality of the daily treatment regimen required to (hopefully) keep the worst at bay.
I have no answers for you; only acknowledgment, compassion, support.....
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
I realize I am still in shock mode. It's so hard to believe that he has cf. What I mean by "hard" is that he doesn't look or act sick. That makes it hard to go through the daily treatments. It's easier to remember the enzymes and vitamins because we immediately experience the effect of missing a dose, but the lung treatments are completely different. Now that we've been doing the nebs for a week, I'm seeing more lung symptoms. How weird is that? I'm assuming the neb trtmnts are breaking up the congestion we didn't know was even there???
Thanks for your comments. I appreciate your thoughts.
Thanks for your comments. I appreciate your thoughts.
I realize I am still in shock mode. It's so hard to believe that he has cf. What I mean by "hard" is that he doesn't look or act sick. That makes it hard to go through the daily treatments. It's easier to remember the enzymes and vitamins because we immediately experience the effect of missing a dose, but the lung treatments are completely different. Now that we've been doing the nebs for a week, I'm seeing more lung symptoms. How weird is that? I'm assuming the neb trtmnts are breaking up the congestion we didn't know was even there???
Thanks for your comments. I appreciate your thoughts.
Thanks for your comments. I appreciate your thoughts.
I realize I am still in shock mode. It's so hard to believe that he has cf. What I mean by "hard" is that he doesn't look or act sick. That makes it hard to go through the daily treatments. It's easier to remember the enzymes and vitamins because we immediately experience the effect of missing a dose, but the lung treatments are completely different. Now that we've been doing the nebs for a week, I'm seeing more lung symptoms. How weird is that? I'm assuming the neb trtmnts are breaking up the congestion we didn't know was even there???
Thanks for your comments. I appreciate your thoughts.
Thanks for your comments. I appreciate your thoughts.
That is a major obstacle with CF. Both as the CFer and an onlooker. The appearance doesnt co incide with the inner workings. I would say that the treatments are breaking up stuff that is there. Its hard. I do understand, but no matter how had it is now with him appearing healthy. You need to look at the long term.......if I had done that I MIGHT not be quite as progressed. HUGS!
That is a major obstacle with CF. Both as the CFer and an onlooker. The appearance doesnt co incide with the inner workings. I would say that the treatments are breaking up stuff that is there. Its hard. I do understand, but no matter how had it is now with him appearing healthy. You need to look at the long term.......if I had done that I MIGHT not be quite as progressed. HUGS!
That is a major obstacle with CF. Both as the CFer and an onlooker. The appearance doesnt co incide with the inner workings. I would say that the treatments are breaking up stuff that is there. Its hard. I do understand, but no matter how had it is now with him appearing healthy. You need to look at the long term.......if I had done that I MIGHT not be quite as progressed. HUGS!
I identified with Dana's "grieving" post. Even though my daughter was 14 years old when she was diagnosed, a part of me felt the grieving process because of the possibility of her shortened life span. It is a shock to the system. But we did quickly turn (within minutes) our focus on the positive's as well.
I identified with Dana's "grieving" post. Even though my daughter was 14 years old when she was diagnosed, a part of me felt the grieving process because of the possibility of her shortened life span. It is a shock to the system. But we did quickly turn (within minutes) our focus on the positive's as well.