Should I be scared?

Charlene · Sep 1, 2009

I bet you have got some scared feelings going on even though you seem pretty calm about all of this. Don't worry you are not alone. I am 47 and was just diagnosed two years ago. It wasn't that I didn't have symptoms, but I just kept getting misdiagnosed. I was told I had astma and copd. Fortunately, the meds used were some of what I need for cf, but they were smaller doses of what I take now.I can tell you I am doing better now than I was two years ago when I was in the hospital AGAIN with pneumonia. I am thankful I didn't find out until I was grown because my parents would have "put me in a bubble" not letting me do anything, since they are overprotective. I got to enjoy my life and do everything I wanted. Now, I realize sometimes I have to slow down and maybe be a little more cautious. I can still enjoy life and make sure I do every day. Don't think just because you are "old" by cf standards it doesn't mean that you won't be able to be around and doing good for a long time. Take care of yourself and you can do it.

Charlene · Sep 1, 2009

I bet you have got some scared feelings going on even though you seem pretty calm about all of this. Don't worry you are not alone. I am 47 and was just diagnosed two years ago. It wasn't that I didn't have symptoms, but I just kept getting misdiagnosed. I was told I had astma and copd. Fortunately, the meds used were some of what I need for cf, but they were smaller doses of what I take now.I can tell you I am doing better now than I was two years ago when I was in the hospital AGAIN with pneumonia. I am thankful I didn't find out until I was grown because my parents would have "put me in a bubble" not letting me do anything, since they are overprotective. I got to enjoy my life and do everything I wanted. Now, I realize sometimes I have to slow down and maybe be a little more cautious. I can still enjoy life and make sure I do every day. Don't think just because you are "old" by cf standards it doesn't mean that you won't be able to be around and doing good for a long time. Take care of yourself and you can do it.

Charlene · Sep 1, 2009

I bet you have got some scared feelings going on even though you seem pretty calm about all of this. Don't worry you are not alone. I am 47 and was just diagnosed two years ago. It wasn't that I didn't have symptoms, but I just kept getting misdiagnosed. I was told I had astma and copd. Fortunately, the meds used were some of what I need for cf, but they were smaller doses of what I take now.I can tell you I am doing better now than I was two years ago when I was in the hospital AGAIN with pneumonia. I am thankful I didn't find out until I was grown because my parents would have "put me in a bubble" not letting me do anything, since they are overprotective. I got to enjoy my life and do everything I wanted. Now, I realize sometimes I have to slow down and maybe be a little more cautious. I can still enjoy life and make sure I do every day. Don't think just because you are "old" by cf standards it doesn't mean that you won't be able to be around and doing good for a long time. Take care of yourself and you can do it.

Charlene · Sep 1, 2009

I bet you have got some scared feelings going on even though you seem pretty calm about all of this. Don't worry you are not alone. I am 47 and was just diagnosed two years ago. It wasn't that I didn't have symptoms, but I just kept getting misdiagnosed. I was told I had astma and copd. Fortunately, the meds used were some of what I need for cf, but they were smaller doses of what I take now.I can tell you I am doing better now than I was two years ago when I was in the hospital AGAIN with pneumonia. I am thankful I didn't find out until I was grown because my parents would have "put me in a bubble" not letting me do anything, since they are overprotective. I got to enjoy my life and do everything I wanted. Now, I realize sometimes I have to slow down and maybe be a little more cautious. I can still enjoy life and make sure I do every day. Don't think just because you are "old" by cf standards it doesn't mean that you won't be able to be around and doing good for a long time. Take care of yourself and you can do it.

Charlene · Sep 1, 2009

I bet you have got some scared feelings going on even though you seem pretty calm about all of this. Don't worry you are not alone. I am 47 and was just diagnosed two years ago. It wasn't that I didn't have symptoms, but I just kept getting misdiagnosed. I was told I had astma and copd. Fortunately, the meds used were some of what I need for cf, but they were smaller doses of what I take now.I can tell you I am doing better now than I was two years ago when I was in the hospital AGAIN with pneumonia. I am thankful I didn't find out until I was grown because my parents would have "put me in a bubble" not letting me do anything, since they are overprotective. I got to enjoy my life and do everything I wanted. Now, I realize sometimes I have to slow down and maybe be a little more cautious. I can still enjoy life and make sure I do every day. Don't think just because you are "old" by cf standards it doesn't mean that you won't be able to be around and doing good for a long time. Take care of yourself and you can do it.

gunelle · Sep 1, 2009

Hi again, thanks for answering you all. I really do feel like I have a lot of living yet to do. I have so much to live for, and I hope I can live with my illness, take it easy at times, but still live to grown old with my partner. Have children, a house of my own, etc.

My mutations are F508del/R117C. I have little to no mucus, where as before I began to take cf medicins, I had everyday. I have sinus infection a lot of the time, and this bothers me. And sometimes I get short of breath, normally when I have been around smoke or too much sun.

I have had pnemunonia 3-4 times, last time was about 2 yrs ago.

I genearlly feel good, much better than before I got diganosed, but I do get tired.

We cannot look into the future, I just have to enjoy every day. And hope to have a good long one, and do my best to have just that.

gunelle · Sep 1, 2009

Hi again, thanks for answering you all. I really do feel like I have a lot of living yet to do. I have so much to live for, and I hope I can live with my illness, take it easy at times, but still live to grown old with my partner. Have children, a house of my own, etc.

My mutations are F508del/R117C. I have little to no mucus, where as before I began to take cf medicins, I had everyday. I have sinus infection a lot of the time, and this bothers me. And sometimes I get short of breath, normally when I have been around smoke or too much sun.

I have had pnemunonia 3-4 times, last time was about 2 yrs ago.

I genearlly feel good, much better than before I got diganosed, but I do get tired.

We cannot look into the future, I just have to enjoy every day. And hope to have a good long one, and do my best to have just that.

gunelle · Sep 1, 2009

Hi again, thanks for answering you all. I really do feel like I have a lot of living yet to do. I have so much to live for, and I hope I can live with my illness, take it easy at times, but still live to grown old with my partner. Have children, a house of my own, etc.

My mutations are F508del/R117C. I have little to no mucus, where as before I began to take cf medicins, I had everyday. I have sinus infection a lot of the time, and this bothers me. And sometimes I get short of breath, normally when I have been around smoke or too much sun.

I have had pnemunonia 3-4 times, last time was about 2 yrs ago.

I genearlly feel good, much better than before I got diganosed, but I do get tired.

We cannot look into the future, I just have to enjoy every day. And hope to have a good long one, and do my best to have just that.

gunelle · Sep 1, 2009

Hi again, thanks for answering you all. I really do feel like I have a lot of living yet to do. I have so much to live for, and I hope I can live with my illness, take it easy at times, but still live to grown old with my partner. Have children, a house of my own, etc.

My mutations are F508del/R117C. I have little to no mucus, where as before I began to take cf medicins, I had everyday. I have sinus infection a lot of the time, and this bothers me. And sometimes I get short of breath, normally when I have been around smoke or too much sun.

I have had pnemunonia 3-4 times, last time was about 2 yrs ago.

I genearlly feel good, much better than before I got diganosed, but I do get tired.

We cannot look into the future, I just have to enjoy every day. And hope to have a good long one, and do my best to have just that.

gunelle · Sep 1, 2009

Hi again, thanks for answering you all. I really do feel like I have a lot of living yet to do. I have so much to live for, and I hope I can live with my illness, take it easy at times, but still live to grown old with my partner. Have children, a house of my own, etc.
 
 My mutations are F508del/R117C. I have little to no mucus, where as before I began to take cf medicins, I had everyday. I have sinus infection a lot of the time, and this bothers me. And sometimes I get short of breath, normally when I have been around smoke or too much sun.
 
 I have had pnemunonia 3-4 times, last time was about 2 yrs ago.
 
 I genearlly feel good, much better than before I got diganosed, but I do get tired.
 
 We cannot look into the future, I just have to enjoy every day. And hope to have a good long one, and do my best to have just that.

Ratatosk · Sep 1, 2009

Just a side note regarding sinus infections -- have you done sinus rinses, like the neil med ones. I've noticed a significant improvement with our child doing sinus rinses before bed each night. There are also medicated sinus rinses with antibiotics, depending upon what you're culturing there and some people use a sinus nebulizer with inhaled antibiotics.

We were told when DS was little and had a sinus infection that it was important to try to knock it out/down because the infection could drain, possibly get into the lungs and cause more issues.

Ratatosk · Sep 1, 2009

Just a side note regarding sinus infections -- have you done sinus rinses, like the neil med ones. I've noticed a significant improvement with our child doing sinus rinses before bed each night. There are also medicated sinus rinses with antibiotics, depending upon what you're culturing there and some people use a sinus nebulizer with inhaled antibiotics.

We were told when DS was little and had a sinus infection that it was important to try to knock it out/down because the infection could drain, possibly get into the lungs and cause more issues.

Ratatosk · Sep 1, 2009

Just a side note regarding sinus infections -- have you done sinus rinses, like the neil med ones. I've noticed a significant improvement with our child doing sinus rinses before bed each night. There are also medicated sinus rinses with antibiotics, depending upon what you're culturing there and some people use a sinus nebulizer with inhaled antibiotics.

We were told when DS was little and had a sinus infection that it was important to try to knock it out/down because the infection could drain, possibly get into the lungs and cause more issues.

Ratatosk · Sep 1, 2009

Just a side note regarding sinus infections -- have you done sinus rinses, like the neil med ones. I've noticed a significant improvement with our child doing sinus rinses before bed each night. There are also medicated sinus rinses with antibiotics, depending upon what you're culturing there and some people use a sinus nebulizer with inhaled antibiotics.

We were told when DS was little and had a sinus infection that it was important to try to knock it out/down because the infection could drain, possibly get into the lungs and cause more issues.

Ratatosk · Sep 1, 2009

Just a side note regarding sinus infections -- have you done sinus rinses, like the neil med ones. I've noticed a significant improvement with our child doing sinus rinses before bed each night. There are also medicated sinus rinses with antibiotics, depending upon what you're culturing there and some people use a sinus nebulizer with inhaled antibiotics.
 
 We were told when DS was little and had a sinus infection that it was important to try to knock it out/down because the infection could drain, possibly get into the lungs and cause more issues.

gunelle · Sep 1, 2009