Is everyone with CF thin?

[cysticfibrosisgirl]

Hi,

I have CF and I am 19 years old. I always had severe digestive issues and now use a feeding tube due to it. I also now take a ton of enzymes and digestive pills.

I have some lungs issues also but doctors say my CT of my lungs is normal?! Do people with CF sometimes have a normal CT scan? Sometimes when I get my lung infections I do have an abnormal chest x-ray.

My other ?? is are tune-ups for when your not real sick to prevent you from getting real bad lung infections?? Becuase my doctor says if I feel a little sick then it's time to go in for IV meds for overnight. But then if my doctor is not the one on over night or the next day they stop my meds and send me home because the other docs don't understand that it's to keep me from not getting sick!! this makes me so mad the way the world does not always understand CF..

So and then are some CFers fat? becuase I was real thin but and I still kind of am. but my docs don't want me to get thiner then 135. right now I am 140. and I look great! LOL..

So if someone could please help with these ??? that would be great!
Thanks

 

[cysticfibrosisgirl]

Hi,

I have CF and I am 19 years old. I always had severe digestive issues and now use a feeding tube due to it. I also now take a ton of enzymes and digestive pills.

I have some lungs issues also but doctors say my CT of my lungs is normal?! Do people with CF sometimes have a normal CT scan? Sometimes when I get my lung infections I do have an abnormal chest x-ray.

My other ?? is are tune-ups for when your not real sick to prevent you from getting real bad lung infections?? Becuase my doctor says if I feel a little sick then it's time to go in for IV meds for overnight. But then if my doctor is not the one on over night or the next day they stop my meds and send me home because the other docs don't understand that it's to keep me from not getting sick!! this makes me so mad the way the world does not always understand CF..

So and then are some CFers fat? becuase I was real thin but and I still kind of am. but my docs don't want me to get thiner then 135. right now I am 140. and I look great! LOL..

So if someone could please help with these ??? that would be great!
Thanks

 

[cysticfibrosisgirl]

Hi,

I have CF and I am 19 years old. I always had severe digestive issues and now use a feeding tube due to it. I also now take a ton of enzymes and digestive pills.

I have some lungs issues also but doctors say my CT of my lungs is normal?! Do people with CF sometimes have a normal CT scan? Sometimes when I get my lung infections I do have an abnormal chest x-ray.

My other ?? is are tune-ups for when your not real sick to prevent you from getting real bad lung infections?? Becuase my doctor says if I feel a little sick then it's time to go in for IV meds for overnight. But then if my doctor is not the one on over night or the next day they stop my meds and send me home because the other docs don't understand that it's to keep me from not getting sick!! this makes me so mad the way the world does not always understand CF..

So and then are some CFers fat? becuase I was real thin but and I still kind of am. but my docs don't want me to get thiner then 135. right now I am 140. and I look great! LOL..

So if someone could please help with these ??? that would be great!
Thanks

 

[cysticfibrosisgirl]

Hi,

I have CF and I am 19 years old. I always had severe digestive issues and now use a feeding tube due to it. I also now take a ton of enzymes and digestive pills.

I have some lungs issues also but doctors say my CT of my lungs is normal?! Do people with CF sometimes have a normal CT scan? Sometimes when I get my lung infections I do have an abnormal chest x-ray.

My other ?? is are tune-ups for when your not real sick to prevent you from getting real bad lung infections?? Becuase my doctor says if I feel a little sick then it's time to go in for IV meds for overnight. But then if my doctor is not the one on over night or the next day they stop my meds and send me home because the other docs don't understand that it's to keep me from not getting sick!! this makes me so mad the way the world does not always understand CF..

So and then are some CFers fat? becuase I was real thin but and I still kind of am. but my docs don't want me to get thiner then 135. right now I am 140. and I look great! LOL..

So if someone could please help with these ??? that would be great!
Thanks

 

[cysticfibrosisgirl]

Hi,

I have CF and I am 19 years old. I always had severe digestive issues and now use a feeding tube due to it. I also now take a ton of enzymes and digestive pills.

I have some lungs issues also but doctors say my CT of my lungs is normal?! Do people with CF sometimes have a normal CT scan? Sometimes when I get my lung infections I do have an abnormal chest x-ray.

My other ?? is are tune-ups for when your not real sick to prevent you from getting real bad lung infections?? Becuase my doctor says if I feel a little sick then it's time to go in for IV meds for overnight. But then if my doctor is not the one on over night or the next day they stop my meds and send me home because the other docs don't understand that it's to keep me from not getting sick!! this makes me so mad the way the world does not always understand CF..

So and then are some CFers fat? becuase I was real thin but and I still kind of am. but my docs don't want me to get thiner then 135. right now I am 140. and I look great! LOL..

So if someone could please help with these ??? that would be great!
Thanks

 

[Faust]

I was very thin and unmuscular till I hit around 16 or 17. Then I started to fill out and look like a man.

 

[Faust]

I was very thin and unmuscular till I hit around 16 or 17. Then I started to fill out and look like a man.

 

[Faust]

I was very thin and unmuscular till I hit around 16 or 17. Then I started to fill out and look like a man.

 

[Faust]

I was very thin and unmuscular till I hit around 16 or 17. Then I started to fill out and look like a man.

 

[Faust]

I was very thin and unmuscular till I hit around 16 or 17. Then I started to fill out and look like a man.

 

[jdprecious]

My daughter *was* thin before diagnosed. At 1 yr old she weighed 18 lbs. At 3 yrs old when she was dx she weighed 22. 4 lbs in 2 yrs. Not acceptable at all to me. She looked like a malnourished ethiopian but she ate like an adult.

Now, 2.5 yrs later after dx, she has gained 43 MORE pounds. My almost 6 yr old is tall and tips the scales at 65 lbs. She is in gymnastics and ballet, so mostly muscle. But the child does have a ghetto booty! So, no she is not by any means tiny and skinny.

Much Love
Jess

 

[jdprecious]

My daughter *was* thin before diagnosed. At 1 yr old she weighed 18 lbs. At 3 yrs old when she was dx she weighed 22. 4 lbs in 2 yrs. Not acceptable at all to me. She looked like a malnourished ethiopian but she ate like an adult.

Now, 2.5 yrs later after dx, she has gained 43 MORE pounds. My almost 6 yr old is tall and tips the scales at 65 lbs. She is in gymnastics and ballet, so mostly muscle. But the child does have a ghetto booty! So, no she is not by any means tiny and skinny.

Much Love
Jess

 

[jdprecious]

My daughter *was* thin before diagnosed. At 1 yr old she weighed 18 lbs. At 3 yrs old when she was dx she weighed 22. 4 lbs in 2 yrs. Not acceptable at all to me. She looked like a malnourished ethiopian but she ate like an adult.

Now, 2.5 yrs later after dx, she has gained 43 MORE pounds. My almost 6 yr old is tall and tips the scales at 65 lbs. She is in gymnastics and ballet, so mostly muscle. But the child does have a ghetto booty! So, no she is not by any means tiny and skinny.

Much Love
Jess

 

[jdprecious]

My daughter *was* thin before diagnosed. At 1 yr old she weighed 18 lbs. At 3 yrs old when she was dx she weighed 22. 4 lbs in 2 yrs. Not acceptable at all to me. She looked like a malnourished ethiopian but she ate like an adult.

Now, 2.5 yrs later after dx, she has gained 43 MORE pounds. My almost 6 yr old is tall and tips the scales at 65 lbs. She is in gymnastics and ballet, so mostly muscle. But the child does have a ghetto booty! So, no she is not by any means tiny and skinny.

Much Love
Jess

 

[jdprecious]

My daughter *was* thin before diagnosed. At 1 yr old she weighed 18 lbs. At 3 yrs old when she was dx she weighed 22. 4 lbs in 2 yrs. Not acceptable at all to me. She looked like a malnourished ethiopian but she ate like an adult.

Now, 2.5 yrs later after dx, she has gained 43 MORE pounds. My almost 6 yr old is tall and tips the scales at 65 lbs. She is in gymnastics and ballet, so mostly muscle. But the child does have a ghetto booty! So, no she is not by any means tiny and skinny.

Much Love
Jess

 

[mom2lillian]

Anika-Not all CF'ers are thin, I for one have always had to try to loose weight not gain.

Also, what you are describing about being put on IV's then taken off right away again is unacceptable and can do more harm then good. If your doctor feels it is time for a 'tune up' befor eyou get really sick that is great but he needs to make his orders to the hospital and other doctors clear. Killing only a small portion of the bacteria before going off antibiotics can breed resistance in the ones that lived and allow them to proliferate thereby passing down their resistance.

There are many different 'theories' about when to go on antibiotics and I feel that a proactive one is best and it sounds like your doctor does tooo. My advice would be that next time you see him ask alot of questions, make sure you have a soudn understanding and then if you do begin treatments dont let anyone stop you besides that doctor.

take care

 

[mom2lillian]

Anika-Not all CF'ers are thin, I for one have always had to try to loose weight not gain.

Also, what you are describing about being put on IV's then taken off right away again is unacceptable and can do more harm then good. If your doctor feels it is time for a 'tune up' befor eyou get really sick that is great but he needs to make his orders to the hospital and other doctors clear. Killing only a small portion of the bacteria before going off antibiotics can breed resistance in the ones that lived and allow them to proliferate thereby passing down their resistance.

There are many different 'theories' about when to go on antibiotics and I feel that a proactive one is best and it sounds like your doctor does tooo. My advice would be that next time you see him ask alot of questions, make sure you have a soudn understanding and then if you do begin treatments dont let anyone stop you besides that doctor.

take care

 

[mom2lillian]

Anika-Not all CF'ers are thin, I for one have always had to try to loose weight not gain.

Also, what you are describing about being put on IV's then taken off right away again is unacceptable and can do more harm then good. If your doctor feels it is time for a 'tune up' befor eyou get really sick that is great but he needs to make his orders to the hospital and other doctors clear. Killing only a small portion of the bacteria before going off antibiotics can breed resistance in the ones that lived and allow them to proliferate thereby passing down their resistance.

There are many different 'theories' about when to go on antibiotics and I feel that a proactive one is best and it sounds like your doctor does tooo. My advice would be that next time you see him ask alot of questions, make sure you have a soudn understanding and then if you do begin treatments dont let anyone stop you besides that doctor.

take care

 

[mom2lillian]

Anika-Not all CF'ers are thin, I for one have always had to try to loose weight not gain.

Also, what you are describing about being put on IV's then taken off right away again is unacceptable and can do more harm then good. If your doctor feels it is time for a 'tune up' befor eyou get really sick that is great but he needs to make his orders to the hospital and other doctors clear. Killing only a small portion of the bacteria before going off antibiotics can breed resistance in the ones that lived and allow them to proliferate thereby passing down their resistance.

There are many different 'theories' about when to go on antibiotics and I feel that a proactive one is best and it sounds like your doctor does tooo. My advice would be that next time you see him ask alot of questions, make sure you have a soudn understanding and then if you do begin treatments dont let anyone stop you besides that doctor.

take care

 

[mom2lillian]

Anika-Not all CF'ers are thin, I for one have always had to try to loose weight not gain.

Also, what you are describing about being put on IV's then taken off right away again is unacceptable and can do more harm then good. If your doctor feels it is time for a 'tune up' befor eyou get really sick that is great but he needs to make his orders to the hospital and other doctors clear. Killing only a small portion of the bacteria before going off antibiotics can breed resistance in the ones that lived and allow them to proliferate thereby passing down their resistance.

There are many different 'theories' about when to go on antibiotics and I feel that a proactive one is best and it sounds like your doctor does tooo. My advice would be that next time you see him ask alot of questions, make sure you have a soudn understanding and then if you do begin treatments dont let anyone stop you besides that doctor.

take care