Any Suggestions?

V

vinyrdsong

New member
Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..." However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily. I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.

She wants to loose weight so bad plus she hates going to the clinic with all her heart, because no matter how she feels, i.e., congested, achey, since her weight and pfts are good, the doctors pretty much tell her she is great. They would worry only when her numbers start slipping, i.e., lower pfts and weight loss of any significance.

Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.

I truly would love for her to join some of these groups, but she doesn't feel like she can because she doesn't feel like she has the worries that you all deal with (yet she does).

Any way, I am just rambling so sorry.

Take care.

Christie (mom to Sam, 19 yr old w/cf)
 
V

vinyrdsong

New member
Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..." However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily. I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.

She wants to loose weight so bad plus she hates going to the clinic with all her heart, because no matter how she feels, i.e., congested, achey, since her weight and pfts are good, the doctors pretty much tell her she is great. They would worry only when her numbers start slipping, i.e., lower pfts and weight loss of any significance.

Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.

I truly would love for her to join some of these groups, but she doesn't feel like she can because she doesn't feel like she has the worries that you all deal with (yet she does).

Any way, I am just rambling so sorry.

Take care.

Christie (mom to Sam, 19 yr old w/cf)
 
V

vinyrdsong

New member
Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..." However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily. I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.

She wants to loose weight so bad plus she hates going to the clinic with all her heart, because no matter how she feels, i.e., congested, achey, since her weight and pfts are good, the doctors pretty much tell her she is great. They would worry only when her numbers start slipping, i.e., lower pfts and weight loss of any significance.

Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.

I truly would love for her to join some of these groups, but she doesn't feel like she can because she doesn't feel like she has the worries that you all deal with (yet she does).

Any way, I am just rambling so sorry.

Take care.

Christie (mom to Sam, 19 yr old w/cf)
 
V

vinyrdsong

New member
Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..." However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily. I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.

She wants to loose weight so bad plus she hates going to the clinic with all her heart, because no matter how she feels, i.e., congested, achey, since her weight and pfts are good, the doctors pretty much tell her she is great. They would worry only when her numbers start slipping, i.e., lower pfts and weight loss of any significance.

Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.

I truly would love for her to join some of these groups, but she doesn't feel like she can because she doesn't feel like she has the worries that you all deal with (yet she does).

Any way, I am just rambling so sorry.

Take care.

Christie (mom to Sam, 19 yr old w/cf)
 
V

vinyrdsong

New member
Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..." However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily. I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
<br />
<br />She wants to loose weight so bad plus she hates going to the clinic with all her heart, because no matter how she feels, i.e., congested, achey, since her weight and pfts are good, the doctors pretty much tell her she is great. They would worry only when her numbers start slipping, i.e., lower pfts and weight loss of any significance.
<br />
<br />Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
<br />
<br />I truly would love for her to join some of these groups, but she doesn't feel like she can because she doesn't feel like she has the worries that you all deal with (yet she does).
<br />
<br />Any way, I am just rambling so sorry.
<br />
<br />Take care.
<br />
<br />Christie (mom to Sam, 19 yr old w/cf)
 
S

Sakem

New member
Hi Christie,

I know with my child because his FEV1 and weight are always so good, they do make it seem like he is normal, and unique for a CF person, but I didn't think there was a CF doctor out there, that did not stress CPT, even for someone w/ no symptoms. I do not put a lot of stock in FEV1s. They do not always have to go significantly down and may be a late indicator of lung issues. I think docs put to much faith in this number. What are her 25-75 numbers? This is always the one measure I can see lower, when my child has something going on.

Do u have another clinic close that you could go to for a another opinion?
 
S

Sakem

New member
Hi Christie,

I know with my child because his FEV1 and weight are always so good, they do make it seem like he is normal, and unique for a CF person, but I didn't think there was a CF doctor out there, that did not stress CPT, even for someone w/ no symptoms. I do not put a lot of stock in FEV1s. They do not always have to go significantly down and may be a late indicator of lung issues. I think docs put to much faith in this number. What are her 25-75 numbers? This is always the one measure I can see lower, when my child has something going on.

Do u have another clinic close that you could go to for a another opinion?
 
S

Sakem

New member
Hi Christie,

I know with my child because his FEV1 and weight are always so good, they do make it seem like he is normal, and unique for a CF person, but I didn't think there was a CF doctor out there, that did not stress CPT, even for someone w/ no symptoms. I do not put a lot of stock in FEV1s. They do not always have to go significantly down and may be a late indicator of lung issues. I think docs put to much faith in this number. What are her 25-75 numbers? This is always the one measure I can see lower, when my child has something going on.

Do u have another clinic close that you could go to for a another opinion?
 
S

Sakem

New member
Hi Christie,

I know with my child because his FEV1 and weight are always so good, they do make it seem like he is normal, and unique for a CF person, but I didn't think there was a CF doctor out there, that did not stress CPT, even for someone w/ no symptoms. I do not put a lot of stock in FEV1s. They do not always have to go significantly down and may be a late indicator of lung issues. I think docs put to much faith in this number. What are her 25-75 numbers? This is always the one measure I can see lower, when my child has something going on.

Do u have another clinic close that you could go to for a another opinion?
 
S

Sakem

New member
Hi Christie,
<br />
<br />I know with my child because his FEV1 and weight are always so good, they do make it seem like he is normal, and unique for a CF person, but I didn't think there was a CF doctor out there, that did not stress CPT, even for someone w/ no symptoms. I do not put a lot of stock in FEV1s. They do not always have to go significantly down and may be a late indicator of lung issues. I think docs put to much faith in this number. What are her 25-75 numbers? This is always the one measure I can see lower, when my child has something going on.
<br />
<br />Do u have another clinic close that you could go to for a another opinion?
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vinyrdsong</b></i>

Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..."
</end quote></div>
My 21 year old son wcf was not very compliant with conventional treatments. He is enthusiastically cooperative with the alternative stuff we gradually began doing and he and I have both improved a lot. He and I both have a diagnosis of "atypical CF" and our doctors tended to not take our health issues very seriously because we were in good shape for someone with CF.

<div class="FTQUOTE"><begin quote>However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily.
</end quote></div>

I was skinny as a kid but gradually got heavier and heavier as an adult. I believe much of it was a form of edema -- ie water weight. I have lost about 3 dress sizes with getting healthier and it is no longer a chore to eat like it was for many years. My son wcf has beefed up enough that he was asked a few months ago if he was in the military. He had always been underweight. So it looks to me like getting healthier can correct either overweight or underweight issues.

<div class="FTQUOTE"><begin quote>I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
</end quote></div>

I was severely hypoglycemic when I was younger and gradually got less hypoglycemic. I was probably in real danger of becoming diabetic. These days, my blood sugar is more stable than it has ever been. I have seen at least one article that indicates that inflammation likely plays a role in diabetes. I have worked hard on getting inflammation under control. One way I have done that is to get excess acidity under control. Another way I have worked on that is to get rid of allergens in my home, like toxic cleaners.

<div class="FTQUOTE"><begin quote>Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
</end quote></div>

Depression can be rooted in physical health problems. An article I tripped across a few months ago links it to high levels of arachidonic acid (AA) and it is my understanding that people wcf tend to be high in AA. For me, depression is often due to anemia. Depression can also be due to a sense of helplessness and it sounds to me like her doctors are very likely making her feel helpless with their message that there is nothing to really do since she is so healthy for a person with CF. I found that same attitude maddening when I was first diagnosed.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vinyrdsong</b></i>

Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..."
</end quote></div>
My 21 year old son wcf was not very compliant with conventional treatments. He is enthusiastically cooperative with the alternative stuff we gradually began doing and he and I have both improved a lot. He and I both have a diagnosis of "atypical CF" and our doctors tended to not take our health issues very seriously because we were in good shape for someone with CF.

<div class="FTQUOTE"><begin quote>However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily.
</end quote></div>

I was skinny as a kid but gradually got heavier and heavier as an adult. I believe much of it was a form of edema -- ie water weight. I have lost about 3 dress sizes with getting healthier and it is no longer a chore to eat like it was for many years. My son wcf has beefed up enough that he was asked a few months ago if he was in the military. He had always been underweight. So it looks to me like getting healthier can correct either overweight or underweight issues.

<div class="FTQUOTE"><begin quote>I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
</end quote></div>

I was severely hypoglycemic when I was younger and gradually got less hypoglycemic. I was probably in real danger of becoming diabetic. These days, my blood sugar is more stable than it has ever been. I have seen at least one article that indicates that inflammation likely plays a role in diabetes. I have worked hard on getting inflammation under control. One way I have done that is to get excess acidity under control. Another way I have worked on that is to get rid of allergens in my home, like toxic cleaners.

<div class="FTQUOTE"><begin quote>Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
</end quote></div>

Depression can be rooted in physical health problems. An article I tripped across a few months ago links it to high levels of arachidonic acid (AA) and it is my understanding that people wcf tend to be high in AA. For me, depression is often due to anemia. Depression can also be due to a sense of helplessness and it sounds to me like her doctors are very likely making her feel helpless with their message that there is nothing to really do since she is so healthy for a person with CF. I found that same attitude maddening when I was first diagnosed.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vinyrdsong</b></i>

Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..."
</end quote></div>
My 21 year old son wcf was not very compliant with conventional treatments. He is enthusiastically cooperative with the alternative stuff we gradually began doing and he and I have both improved a lot. He and I both have a diagnosis of "atypical CF" and our doctors tended to not take our health issues very seriously because we were in good shape for someone with CF.

<div class="FTQUOTE"><begin quote>However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily.
</end quote></div>

I was skinny as a kid but gradually got heavier and heavier as an adult. I believe much of it was a form of edema -- ie water weight. I have lost about 3 dress sizes with getting healthier and it is no longer a chore to eat like it was for many years. My son wcf has beefed up enough that he was asked a few months ago if he was in the military. He had always been underweight. So it looks to me like getting healthier can correct either overweight or underweight issues.

<div class="FTQUOTE"><begin quote>I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
</end quote></div>

I was severely hypoglycemic when I was younger and gradually got less hypoglycemic. I was probably in real danger of becoming diabetic. These days, my blood sugar is more stable than it has ever been. I have seen at least one article that indicates that inflammation likely plays a role in diabetes. I have worked hard on getting inflammation under control. One way I have done that is to get excess acidity under control. Another way I have worked on that is to get rid of allergens in my home, like toxic cleaners.

<div class="FTQUOTE"><begin quote>Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
</end quote></div>

Depression can be rooted in physical health problems. An article I tripped across a few months ago links it to high levels of arachidonic acid (AA) and it is my understanding that people wcf tend to be high in AA. For me, depression is often due to anemia. Depression can also be due to a sense of helplessness and it sounds to me like her doctors are very likely making her feel helpless with their message that there is nothing to really do since she is so healthy for a person with CF. I found that same attitude maddening when I was first diagnosed.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vinyrdsong</b></i>

Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..."
</end quote>
My 21 year old son wcf was not very compliant with conventional treatments. He is enthusiastically cooperative with the alternative stuff we gradually began doing and he and I have both improved a lot. He and I both have a diagnosis of "atypical CF" and our doctors tended to not take our health issues very seriously because we were in good shape for someone with CF.

<div class="FTQUOTE"><begin quote>However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily.
</end quote>

I was skinny as a kid but gradually got heavier and heavier as an adult. I believe much of it was a form of edema -- ie water weight. I have lost about 3 dress sizes with getting healthier and it is no longer a chore to eat like it was for many years. My son wcf has beefed up enough that he was asked a few months ago if he was in the military. He had always been underweight. So it looks to me like getting healthier can correct either overweight or underweight issues.

<div class="FTQUOTE"><begin quote>I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
</end quote>

I was severely hypoglycemic when I was younger and gradually got less hypoglycemic. I was probably in real danger of becoming diabetic. These days, my blood sugar is more stable than it has ever been. I have seen at least one article that indicates that inflammation likely plays a role in diabetes. I have worked hard on getting inflammation under control. One way I have done that is to get excess acidity under control. Another way I have worked on that is to get rid of allergens in my home, like toxic cleaners.

<div class="FTQUOTE"><begin quote>Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
</end quote>

Depression can be rooted in physical health problems. An article I tripped across a few months ago links it to high levels of arachidonic acid (AA) and it is my understanding that people wcf tend to be high in AA. For me, depression is often due to anemia. Depression can also be due to a sense of helplessness and it sounds to me like her doctors are very likely making her feel helpless with their message that there is nothing to really do since she is so healthy for a person with CF. I found that same attitude maddening when I was first diagnosed.

Good luck with this.
 
M

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>vinyrdsong</b></i>
<br />
<br />Okay...where to begin, my daughter 19 years old w/cf is doing very well. PFTs are awesome, which we are so grateful since she doesn't do her treatments real well, mainly because the doctors that she have gone to make her feel silly for doing them, i.e., "with the numbers you have and with your awesome weight, you are not the normal CFer so..."
<br /></end quote>
<br />My 21 year old son wcf was not very compliant with conventional treatments. He is enthusiastically cooperative with the alternative stuff we gradually began doing and he and I have both improved a lot. He and I both have a diagnosis of "atypical CF" and our doctors tended to not take our health issues very seriously because we were in good shape for someone with CF.
<br />
<br /><div class="FTQUOTE"><begin quote>However, this is my concerns, one her CT scan of her lung shows two of parts of her right lung damaged, the rest looks great. Her A1C keeps rising, it is now 6.2, but since her weight is great, she is afraid to take the insulin that they have suggested in fear of gaining more weight (she is currently 5' 3" and weight 125 lbs). She has had a big portion of her colon taken out and has problems retaining water (up to 8 lbs in one day), so this makes her so worried about her appearance. As for her eating habit, she is a vegetarian (for some reason her stomach can't digest meat at all), but for some reason she can gain weight very easily.
<br /></end quote>
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<br />I was skinny as a kid but gradually got heavier and heavier as an adult. I believe much of it was a form of edema -- ie water weight. I have lost about 3 dress sizes with getting healthier and it is no longer a chore to eat like it was for many years. My son wcf has beefed up enough that he was asked a few months ago if he was in the military. He had always been underweight. So it looks to me like getting healthier can correct either overweight or underweight issues.
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<br /><div class="FTQUOTE"><begin quote>I don't know if anyone experiences this, sometimes, I wonder if perhaps the CF part of the disease, where you stay skinny doesn't affect everyone even though they have other problems, i.e., stomach, sinus, slow moving stomach, constant cough, and sugar levels all over the place, i.e., as low as the 40 as high as 350.
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<br />I was severely hypoglycemic when I was younger and gradually got less hypoglycemic. I was probably in real danger of becoming diabetic. These days, my blood sugar is more stable than it has ever been. I have seen at least one article that indicates that inflammation likely plays a role in diabetes. I have worked hard on getting inflammation under control. One way I have done that is to get excess acidity under control. Another way I have worked on that is to get rid of allergens in my home, like toxic cleaners.
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<br /><div class="FTQUOTE"><begin quote>Any way, not for sure if there are any answers or suggestions, but I do worry about her, mainly because she is starting to become very depressed about this all, i.e., she feels bad, i.e., tired a lot, yet since the doctors considered her a CFer that is not a "normal" CFer for her age, i.e., lower pfts etc...Plus her weight is great for her not even trying, there are many days she doesn't eat, yet she will still gain. No fun.
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<br />Depression can be rooted in physical health problems. An article I tripped across a few months ago links it to high levels of arachidonic acid (AA) and it is my understanding that people wcf tend to be high in AA. For me, depression is often due to anemia. Depression can also be due to a sense of helplessness and it sounds to me like her doctors are very likely making her feel helpless with their message that there is nothing to really do since she is so healthy for a person with CF. I found that same attitude maddening when I was first diagnosed.
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<br />Good luck with this.
 
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