New here - Need info

dewgirl · Mar 17, 2008

Hello all. I've been a lurker here for about a year but I need to ask if anyone has experienced what I am going thru so I finally signed up.

I'm 37 yr old female cfer, 14 yrs married, no children unless you count my dog and cat (I do!), diagnosed at birth with CF. Very mild until 30 yrs old (also noncompliant until then). Last fall I was told I have CF diabetes. My FEV1's are at best 40.

So, my situation....
I am a die hard fan of mountain dew..drank 4 to 5 cans a day until they told me about being diabetic. On the flip side of that I never ever ate sweets. Didn't like cake or pie or candy really unless it was hard candy. Maybe ate candy twice a year. Since I'm now diabetic I only drink diet dew now but I crave sweets like mad! I could eat a whole freaking cake in one sitting. What they heck is that about anyway?

Anywho...I've just had two back to back hospitalizations and the issue with my lungs is not with infection but rather inflammation. I'm on medrol? I think thats the name...upgrade from prednisone. My blood sugars are of course high because of the steriods. But, my lung functions won't go back to 40. Even after a 16 day hospitalization. And, I have no infection at all. If I can cough up yukky stuff its totally clear in color (who thought a cfer could do that?!)

So, is my new found sweets addiction lending to higher sugars thus inflammation in my lungs that won't go away? I would have thought my sugars were higher with straight mountain dew drinking before but maybe not as I didn't eat very much and that may have found a quirky balance.

My doctor doesn't seem to know why I am so inflammed either. He is a great doc and with a CFF center. Who do you go to if they don't know the answer?

In summary, anyone had severe inflammation that is not caused by infection and that IV steroids nor oral steroids can seem to get rid of? They helped a bit but not totally.

If so, please share if you don't mind. I'm a bit at a loss.

Thanks,
Kari

dewgirl · Mar 17, 2008

Hello all. I've been a lurker here for about a year but I need to ask if anyone has experienced what I am going thru so I finally signed up.

I'm 37 yr old female cfer, 14 yrs married, no children unless you count my dog and cat (I do!), diagnosed at birth with CF. Very mild until 30 yrs old (also noncompliant until then). Last fall I was told I have CF diabetes. My FEV1's are at best 40.

So, my situation....
I am a die hard fan of mountain dew..drank 4 to 5 cans a day until they told me about being diabetic. On the flip side of that I never ever ate sweets. Didn't like cake or pie or candy really unless it was hard candy. Maybe ate candy twice a year. Since I'm now diabetic I only drink diet dew now but I crave sweets like mad! I could eat a whole freaking cake in one sitting. What they heck is that about anyway?

Anywho...I've just had two back to back hospitalizations and the issue with my lungs is not with infection but rather inflammation. I'm on medrol? I think thats the name...upgrade from prednisone. My blood sugars are of course high because of the steriods. But, my lung functions won't go back to 40. Even after a 16 day hospitalization. And, I have no infection at all. If I can cough up yukky stuff its totally clear in color (who thought a cfer could do that?!)

So, is my new found sweets addiction lending to higher sugars thus inflammation in my lungs that won't go away? I would have thought my sugars were higher with straight mountain dew drinking before but maybe not as I didn't eat very much and that may have found a quirky balance.

My doctor doesn't seem to know why I am so inflammed either. He is a great doc and with a CFF center. Who do you go to if they don't know the answer?

In summary, anyone had severe inflammation that is not caused by infection and that IV steroids nor oral steroids can seem to get rid of? They helped a bit but not totally.

If so, please share if you don't mind. I'm a bit at a loss.

Thanks,
Kari

dewgirl · Mar 17, 2008

Hello all. I've been a lurker here for about a year but I need to ask if anyone has experienced what I am going thru so I finally signed up.

I'm 37 yr old female cfer, 14 yrs married, no children unless you count my dog and cat (I do!), diagnosed at birth with CF. Very mild until 30 yrs old (also noncompliant until then). Last fall I was told I have CF diabetes. My FEV1's are at best 40.

So, my situation....
I am a die hard fan of mountain dew..drank 4 to 5 cans a day until they told me about being diabetic. On the flip side of that I never ever ate sweets. Didn't like cake or pie or candy really unless it was hard candy. Maybe ate candy twice a year. Since I'm now diabetic I only drink diet dew now but I crave sweets like mad! I could eat a whole freaking cake in one sitting. What they heck is that about anyway?

Anywho...I've just had two back to back hospitalizations and the issue with my lungs is not with infection but rather inflammation. I'm on medrol? I think thats the name...upgrade from prednisone. My blood sugars are of course high because of the steriods. But, my lung functions won't go back to 40. Even after a 16 day hospitalization. And, I have no infection at all. If I can cough up yukky stuff its totally clear in color (who thought a cfer could do that?!)

So, is my new found sweets addiction lending to higher sugars thus inflammation in my lungs that won't go away? I would have thought my sugars were higher with straight mountain dew drinking before but maybe not as I didn't eat very much and that may have found a quirky balance.

My doctor doesn't seem to know why I am so inflammed either. He is a great doc and with a CFF center. Who do you go to if they don't know the answer?

In summary, anyone had severe inflammation that is not caused by infection and that IV steroids nor oral steroids can seem to get rid of? They helped a bit but not totally.

If so, please share if you don't mind. I'm a bit at a loss.

Thanks,
Kari

dewgirl · Mar 17, 2008

Hello all. I've been a lurker here for about a year but I need to ask if anyone has experienced what I am going thru so I finally signed up.

I'm 37 yr old female cfer, 14 yrs married, no children unless you count my dog and cat (I do!), diagnosed at birth with CF. Very mild until 30 yrs old (also noncompliant until then). Last fall I was told I have CF diabetes. My FEV1's are at best 40.

So, my situation....
I am a die hard fan of mountain dew..drank 4 to 5 cans a day until they told me about being diabetic. On the flip side of that I never ever ate sweets. Didn't like cake or pie or candy really unless it was hard candy. Maybe ate candy twice a year. Since I'm now diabetic I only drink diet dew now but I crave sweets like mad! I could eat a whole freaking cake in one sitting. What they heck is that about anyway?

Anywho...I've just had two back to back hospitalizations and the issue with my lungs is not with infection but rather inflammation. I'm on medrol? I think thats the name...upgrade from prednisone. My blood sugars are of course high because of the steriods. But, my lung functions won't go back to 40. Even after a 16 day hospitalization. And, I have no infection at all. If I can cough up yukky stuff its totally clear in color (who thought a cfer could do that?!)

So, is my new found sweets addiction lending to higher sugars thus inflammation in my lungs that won't go away? I would have thought my sugars were higher with straight mountain dew drinking before but maybe not as I didn't eat very much and that may have found a quirky balance.

My doctor doesn't seem to know why I am so inflammed either. He is a great doc and with a CFF center. Who do you go to if they don't know the answer?

In summary, anyone had severe inflammation that is not caused by infection and that IV steroids nor oral steroids can seem to get rid of? They helped a bit but not totally.

If so, please share if you don't mind. I'm a bit at a loss.

Thanks,
Kari

dewgirl · Mar 17, 2008

Hello all. I've been a lurker here for about a year but I need to ask if anyone has experienced what I am going thru so I finally signed up.
 
 I'm 37 yr old female cfer, 14 yrs married, no children unless you count my dog and cat (I do!), diagnosed at birth with CF. Very mild until 30 yrs old (also noncompliant until then). Last fall I was told I have CF diabetes. My FEV1's are at best 40.
 
 So, my situation....
 I am a die hard fan of mountain dew..drank 4 to 5 cans a day until they told me about being diabetic. On the flip side of that I never ever ate sweets. Didn't like cake or pie or candy really unless it was hard candy. Maybe ate candy twice a year. Since I'm now diabetic I only drink diet dew now but I crave sweets like mad! I could eat a whole freaking cake in one sitting. What they heck is that about anyway?
 
 Anywho...I've just had two back to back hospitalizations and the issue with my lungs is not with infection but rather inflammation. I'm on medrol? I think thats the name...upgrade from prednisone. My blood sugars are of course high because of the steriods. But, my lung functions won't go back to 40. Even after a 16 day hospitalization. And, I have no infection at all. If I can cough up yukky stuff its totally clear in color (who thought a cfer could do that?!)
 
 So, is my new found sweets addiction lending to higher sugars thus inflammation in my lungs that won't go away? I would have thought my sugars were higher with straight mountain dew drinking before but maybe not as I didn't eat very much and that may have found a quirky balance.
 
 My doctor doesn't seem to know why I am so inflammed either. He is a great doc and with a CFF center. Who do you go to if they don't know the answer?
 
 In summary, anyone had severe inflammation that is not caused by infection and that IV steroids nor oral steroids can seem to get rid of? They helped a bit but not totally.
 
 If so, please share if you don't mind. I'm a bit at a loss.
 
 Thanks,
 Kari

NoExcuses · Mar 17, 2008

I had huge inflammation issues due to allergies.

My docs checked my blood IgE level year after year, and nothing showed up. I finally got skin tested and I had allergies.

Once I started taking an anti-histamine, put dust mite covers on my pillows and mattress, put a HEPA filter in my bedroom & room where I do meds, did allergy shots, and treated my carpet for dust mites, things got a lot better.

I would suggest getting skin tested. allergies can develop at any time in life.

but ya, sugar can cause huge amounts of inflammation do.

NoExcuses · Mar 17, 2008

I had huge inflammation issues due to allergies.

My docs checked my blood IgE level year after year, and nothing showed up. I finally got skin tested and I had allergies.

Once I started taking an anti-histamine, put dust mite covers on my pillows and mattress, put a HEPA filter in my bedroom & room where I do meds, did allergy shots, and treated my carpet for dust mites, things got a lot better.

I would suggest getting skin tested. allergies can develop at any time in life.

but ya, sugar can cause huge amounts of inflammation do.

NoExcuses · Mar 17, 2008

I had huge inflammation issues due to allergies.

My docs checked my blood IgE level year after year, and nothing showed up. I finally got skin tested and I had allergies.

Once I started taking an anti-histamine, put dust mite covers on my pillows and mattress, put a HEPA filter in my bedroom & room where I do meds, did allergy shots, and treated my carpet for dust mites, things got a lot better.

I would suggest getting skin tested. allergies can develop at any time in life.

but ya, sugar can cause huge amounts of inflammation do.

NoExcuses · Mar 17, 2008

I had huge inflammation issues due to allergies.

My docs checked my blood IgE level year after year, and nothing showed up. I finally got skin tested and I had allergies.

Once I started taking an anti-histamine, put dust mite covers on my pillows and mattress, put a HEPA filter in my bedroom & room where I do meds, did allergy shots, and treated my carpet for dust mites, things got a lot better.

I would suggest getting skin tested. allergies can develop at any time in life.

but ya, sugar can cause huge amounts of inflammation do.

NoExcuses · Mar 17, 2008

I had huge inflammation issues due to allergies.
 
 My docs checked my blood IgE level year after year, and nothing showed up. I finally got skin tested and I had allergies.
 
 Once I started taking an anti-histamine, put dust mite covers on my pillows and mattress, put a HEPA filter in my bedroom & room where I do meds, did allergy shots, and treated my carpet for dust mites, things got a lot better.
 
 I would suggest getting skin tested. allergies can develop at any time in life.
 
 but ya, sugar can cause huge amounts of inflammation do.

SaltyAndSweet · Mar 17, 2008

Welcome Dewgirl!
It is well known that CFRD has an affect on lung function. My FEV1% tanked just before I was diagnosed with CFRD (like 30%).

Are you taking insulin? Just before I was diagnosed with CFRD I craved sweets and carbs (my biggest craving was noodles) like a maniac! I was never much of a sweets girl, even as a kid. My doc explained that the reason for my craving was my body NEEDS the carbs to survive, not a ton, but definitely some. Since I was not making enough insulin to "absorb" and use the carbs, I had serious cravings, my body was screaming for them. Once I started on insulin shots, and got better control of my blood glucose levels I am back to where I don't really desire sweets and carbs.

A few things that come to mind regarding diabetes and inflammation. First, if your blood sugars are running high it will cause dehydration. Not sure if that causes inflammation or not, but either way it is a bad thing. Another thing is that high blood glucose levels damage small blood vessels (like in the lungs), any damage done to the body usually causes inflammation.

Has your CF doc consulted an endocrinologist? Maybe they could help figure out if diabetes may be the culprit.

SaltyAndSweet · Mar 17, 2008

Welcome Dewgirl!
It is well known that CFRD has an affect on lung function. My FEV1% tanked just before I was diagnosed with CFRD (like 30%).

Are you taking insulin? Just before I was diagnosed with CFRD I craved sweets and carbs (my biggest craving was noodles) like a maniac! I was never much of a sweets girl, even as a kid. My doc explained that the reason for my craving was my body NEEDS the carbs to survive, not a ton, but definitely some. Since I was not making enough insulin to "absorb" and use the carbs, I had serious cravings, my body was screaming for them. Once I started on insulin shots, and got better control of my blood glucose levels I am back to where I don't really desire sweets and carbs.

A few things that come to mind regarding diabetes and inflammation. First, if your blood sugars are running high it will cause dehydration. Not sure if that causes inflammation or not, but either way it is a bad thing. Another thing is that high blood glucose levels damage small blood vessels (like in the lungs), any damage done to the body usually causes inflammation.

Has your CF doc consulted an endocrinologist? Maybe they could help figure out if diabetes may be the culprit.

SaltyAndSweet · Mar 17, 2008

Welcome Dewgirl!
It is well known that CFRD has an affect on lung function. My FEV1% tanked just before I was diagnosed with CFRD (like 30%).

Are you taking insulin? Just before I was diagnosed with CFRD I craved sweets and carbs (my biggest craving was noodles) like a maniac! I was never much of a sweets girl, even as a kid. My doc explained that the reason for my craving was my body NEEDS the carbs to survive, not a ton, but definitely some. Since I was not making enough insulin to "absorb" and use the carbs, I had serious cravings, my body was screaming for them. Once I started on insulin shots, and got better control of my blood glucose levels I am back to where I don't really desire sweets and carbs.

A few things that come to mind regarding diabetes and inflammation. First, if your blood sugars are running high it will cause dehydration. Not sure if that causes inflammation or not, but either way it is a bad thing. Another thing is that high blood glucose levels damage small blood vessels (like in the lungs), any damage done to the body usually causes inflammation.

Has your CF doc consulted an endocrinologist? Maybe they could help figure out if diabetes may be the culprit.

SaltyAndSweet · Mar 17, 2008

Welcome Dewgirl!
It is well known that CFRD has an affect on lung function. My FEV1% tanked just before I was diagnosed with CFRD (like 30%).

Are you taking insulin? Just before I was diagnosed with CFRD I craved sweets and carbs (my biggest craving was noodles) like a maniac! I was never much of a sweets girl, even as a kid. My doc explained that the reason for my craving was my body NEEDS the carbs to survive, not a ton, but definitely some. Since I was not making enough insulin to "absorb" and use the carbs, I had serious cravings, my body was screaming for them. Once I started on insulin shots, and got better control of my blood glucose levels I am back to where I don't really desire sweets and carbs.

A few things that come to mind regarding diabetes and inflammation. First, if your blood sugars are running high it will cause dehydration. Not sure if that causes inflammation or not, but either way it is a bad thing. Another thing is that high blood glucose levels damage small blood vessels (like in the lungs), any damage done to the body usually causes inflammation.

Has your CF doc consulted an endocrinologist? Maybe they could help figure out if diabetes may be the culprit.

SaltyAndSweet · Mar 17, 2008

Welcome Dewgirl!
 It is well known that CFRD has an affect on lung function. My FEV1% tanked just before I was diagnosed with CFRD (like 30%).
 
 Are you taking insulin? Just before I was diagnosed with CFRD I craved sweets and carbs (my biggest craving was noodles) like a maniac! I was never much of a sweets girl, even as a kid. My doc explained that the reason for my craving was my body NEEDS the carbs to survive, not a ton, but definitely some. Since I was not making enough insulin to "absorb" and use the carbs, I had serious cravings, my body was screaming for them. Once I started on insulin shots, and got better control of my blood glucose levels I am back to where I don't really desire sweets and carbs.
 
 A few things that come to mind regarding diabetes and inflammation. First, if your blood sugars are running high it will cause dehydration. Not sure if that causes inflammation or not, but either way it is a bad thing. Another thing is that high blood glucose levels damage small blood vessels (like in the lungs), any damage done to the body usually causes inflammation.
 
 Has your CF doc consulted an endocrinologist? Maybe they could help figure out if diabetes may be the culprit.

dewgirl · Mar 17, 2008

Thanks for the replys and welcome.

I am due to have allergy tests in a week at my next clinic appointment. So, that may show something. I'm actually hoping it does so the inflammation can be treated.

As far as the insulin, I am taking the long lasting type. Before oral steroids I was on 4 units a day. Now it's 10 units a day. In the hospital they were also using novalog after meals but I'm not doing that at home. I'm just using prandin to help control blood sugars at meal times.

I didn't crave sweets until after I started on the insulin. I was only diagnosed with diabetes last September and I know I have to control this and be disiplined but they are extremely strong cravings. It's almost like the more out of control my sugars are the stronger my sweet craving is. Though that sounds backwards that's they way it happens with me.

I did see an endocrinologist once but like I said I've not been diabetic that long. We might need to revisit that.

I'm just nervous I guess about falling FEV1 numbers. I really don't want to get down in the low 30s. When I'm sick my FEV1s will drop to 20-25 but they always without fail go back up to 40. Right after starting insulin I actually got a 44 and I hadn't seen that number in two years. Now I can't even get back to 40. Trying to nip this in the bud if nipping is possible.

Thanks for the feedback ya'll. I appreciate it.

dewgirl · Mar 17, 2008

Thanks for the replys and welcome.

I am due to have allergy tests in a week at my next clinic appointment. So, that may show something. I'm actually hoping it does so the inflammation can be treated.

As far as the insulin, I am taking the long lasting type. Before oral steroids I was on 4 units a day. Now it's 10 units a day. In the hospital they were also using novalog after meals but I'm not doing that at home. I'm just using prandin to help control blood sugars at meal times.

I didn't crave sweets until after I started on the insulin. I was only diagnosed with diabetes last September and I know I have to control this and be disiplined but they are extremely strong cravings. It's almost like the more out of control my sugars are the stronger my sweet craving is. Though that sounds backwards that's they way it happens with me.

I did see an endocrinologist once but like I said I've not been diabetic that long. We might need to revisit that.

I'm just nervous I guess about falling FEV1 numbers. I really don't want to get down in the low 30s. When I'm sick my FEV1s will drop to 20-25 but they always without fail go back up to 40. Right after starting insulin I actually got a 44 and I hadn't seen that number in two years. Now I can't even get back to 40. Trying to nip this in the bud if nipping is possible.

Thanks for the feedback ya'll. I appreciate it.

dewgirl · Mar 17, 2008

Thanks for the replys and welcome.

I am due to have allergy tests in a week at my next clinic appointment. So, that may show something. I'm actually hoping it does so the inflammation can be treated.

As far as the insulin, I am taking the long lasting type. Before oral steroids I was on 4 units a day. Now it's 10 units a day. In the hospital they were also using novalog after meals but I'm not doing that at home. I'm just using prandin to help control blood sugars at meal times.

I didn't crave sweets until after I started on the insulin. I was only diagnosed with diabetes last September and I know I have to control this and be disiplined but they are extremely strong cravings. It's almost like the more out of control my sugars are the stronger my sweet craving is. Though that sounds backwards that's they way it happens with me.

I did see an endocrinologist once but like I said I've not been diabetic that long. We might need to revisit that.

I'm just nervous I guess about falling FEV1 numbers. I really don't want to get down in the low 30s. When I'm sick my FEV1s will drop to 20-25 but they always without fail go back up to 40. Right after starting insulin I actually got a 44 and I hadn't seen that number in two years. Now I can't even get back to 40. Trying to nip this in the bud if nipping is possible.

Thanks for the feedback ya'll. I appreciate it.

dewgirl · Mar 17, 2008

Thanks for the replys and welcome.

I am due to have allergy tests in a week at my next clinic appointment. So, that may show something. I'm actually hoping it does so the inflammation can be treated.

As far as the insulin, I am taking the long lasting type. Before oral steroids I was on 4 units a day. Now it's 10 units a day. In the hospital they were also using novalog after meals but I'm not doing that at home. I'm just using prandin to help control blood sugars at meal times.

I didn't crave sweets until after I started on the insulin. I was only diagnosed with diabetes last September and I know I have to control this and be disiplined but they are extremely strong cravings. It's almost like the more out of control my sugars are the stronger my sweet craving is. Though that sounds backwards that's they way it happens with me.

I did see an endocrinologist once but like I said I've not been diabetic that long. We might need to revisit that.

I'm just nervous I guess about falling FEV1 numbers. I really don't want to get down in the low 30s. When I'm sick my FEV1s will drop to 20-25 but they always without fail go back up to 40. Right after starting insulin I actually got a 44 and I hadn't seen that number in two years. Now I can't even get back to 40. Trying to nip this in the bud if nipping is possible.

Thanks for the feedback ya'll. I appreciate it.

dewgirl · Mar 17, 2008

Thanks for the replys and welcome.
 
 I am due to have allergy tests in a week at my next clinic appointment. So, that may show something. I'm actually hoping it does so the inflammation can be treated.
 
 As far as the insulin, I am taking the long lasting type. Before oral steroids I was on 4 units a day. Now it's 10 units a day. In the hospital they were also using novalog after meals but I'm not doing that at home. I'm just using prandin to help control blood sugars at meal times.
 
 I didn't crave sweets until after I started on the insulin. I was only diagnosed with diabetes last September and I know I have to control this and be disiplined but they are extremely strong cravings. It's almost like the more out of control my sugars are the stronger my sweet craving is. Though that sounds backwards that's they way it happens with me.
 
 I did see an endocrinologist once but like I said I've not been diabetic that long. We might need to revisit that.
 
 I'm just nervous I guess about falling FEV1 numbers. I really don't want to get down in the low 30s. When I'm sick my FEV1s will drop to 20-25 but they always without fail go back up to 40. Right after starting insulin I actually got a 44 and I hadn't seen that number in two years. Now I can't even get back to 40. Trying to nip this in the bud if nipping is possible.
 
 Thanks for the feedback ya'll. I appreciate it.

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