this really scared me

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flamejob

New member
16 years is an ENORMOUS amount to lose on an already shortened life expectancy.

im male ... 2 years i can handle ... i had the rapid onset of CFRD in may .. only formally diagnosed just over 2 weeks ago .. and started 'slin' 10 days ago.

im missin 18lbs from my usual weight and 34lbs from my peak (beginnin of may). i can see how the deprivation of carbs totally ravages the body on its own. throw in chronic colonisation of our 'classic' bugs and frequent flare-ups .... its gotta be a recipe for disaster. talk about addin insult to injury ! <img src="i/expressions/face-icon-small-sad.gif" border="0">

as i understand and to concur with liz , cfrd doesnt pose the 'longterm' problems usually associated with type 1 & 2 in the normal pop ... but diabetes related complications usually take years or decades to manifest themselves ... we may not develop these complication due to our shortened life expectancy .

oh well ..... LET THE CHIPS FALL WHERE THEY MAY !!!

you're welcome ... the flamester .
 
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kybert

New member
dont take the article to heart. it doesnt always work that way. as has been mentioned, yours was caught early and you are doing well now. the main damage happens when someone who has full blown cfrd is left undiagnosed for a long time.
 
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kybert

New member
dont take the article to heart. it doesnt always work that way. as has been mentioned, yours was caught early and you are doing well now. the main damage happens when someone who has full blown cfrd is left undiagnosed for a long time.
 
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kybert

New member
dont take the article to heart. it doesnt always work that way. as has been mentioned, yours was caught early and you are doing well now. the main damage happens when someone who has full blown cfrd is left undiagnosed for a long time.
 
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coltsfan715

New member
There may be other factors that contribute to the overall decline ... possibly pregnancy, men MAY on average be more active then women (helping to keep blood sugars under better control and helping also with lung function) maybe different hormonal changes in women cause more problems with CFRD.

I know I have had problems with some hormonal changes in recent months that my doc is contributing to my blood sugars being so difficult to control during the morning hours. When your blood sugars are high for extended periods (or even short periods) it can cause difficulty breathing due to increased inflammation in the lungs.

I am not sure why it is SOOO different for women vs. men but those were just some thoughts since it did not say specifically in the article the women they studied (age, whether or not they had kids, exercise/activity, or where their lung function was when they were diagnosed).

Lindsey
 
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coltsfan715

New member
There may be other factors that contribute to the overall decline ... possibly pregnancy, men MAY on average be more active then women (helping to keep blood sugars under better control and helping also with lung function) maybe different hormonal changes in women cause more problems with CFRD.

I know I have had problems with some hormonal changes in recent months that my doc is contributing to my blood sugars being so difficult to control during the morning hours. When your blood sugars are high for extended periods (or even short periods) it can cause difficulty breathing due to increased inflammation in the lungs.

I am not sure why it is SOOO different for women vs. men but those were just some thoughts since it did not say specifically in the article the women they studied (age, whether or not they had kids, exercise/activity, or where their lung function was when they were diagnosed).

Lindsey
 
C

coltsfan715

New member
There may be other factors that contribute to the overall decline ... possibly pregnancy, men MAY on average be more active then women (helping to keep blood sugars under better control and helping also with lung function) maybe different hormonal changes in women cause more problems with CFRD.

I know I have had problems with some hormonal changes in recent months that my doc is contributing to my blood sugars being so difficult to control during the morning hours. When your blood sugars are high for extended periods (or even short periods) it can cause difficulty breathing due to increased inflammation in the lungs.

I am not sure why it is SOOO different for women vs. men but those were just some thoughts since it did not say specifically in the article the women they studied (age, whether or not they had kids, exercise/activity, or where their lung function was when they were diagnosed).

Lindsey
 
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Diane

New member
You may find comfort in my post, i have had diabetes for over 26 years now. I was diagnosed at 15, and had no lung involvment at the time and diabetes did not interfere much once i was on insulin. I did not get any lung involvment till i got older somewhere in my 20's and it was mild. It was also my own fault, since i never did any treatments, and used to sing in a band and stayed out all hours of the night in a smoky bar. I didnt start having any real lung problems till about 9 years ago when i got cepacia. But diabetes hasnt caused my lung problems or any decline i have had. I have the same problems with keeping my blood sugar under control as everyone else. I take Humulin N once a day and have been on that for many years. I also take Humulin R as needed. I eat sweets but only when i am "allowed" when my blood sugar is on the low side. I try not to deny myself of anything i want, i just use portion control and timing control....lol. When i get sick my blood sugar tends to get higher and i try to keep on top of that with extra insulin. I check my blood sugars every single time i am about to eat ( which is about 6 or 7 times a day), so i know what i can and cannot have and how much. I also check after dinner sometimes because that is when my blood sugar tends to be high sometimes depending on what i had for dinner. I also check my blood sugar right before bed so i can try to avoid low blood sugar during sleep. I check my blood sugar a LOT , but i feel that its the only way for me to know whats going on in my body and helps me to gain more control over my blood sugars. Exercise is also very important in diabetes. It helps lower the blood sugar, and is also a must for our lungs, so it is a dual purpose.
 
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Diane

New member
You may find comfort in my post, i have had diabetes for over 26 years now. I was diagnosed at 15, and had no lung involvment at the time and diabetes did not interfere much once i was on insulin. I did not get any lung involvment till i got older somewhere in my 20's and it was mild. It was also my own fault, since i never did any treatments, and used to sing in a band and stayed out all hours of the night in a smoky bar. I didnt start having any real lung problems till about 9 years ago when i got cepacia. But diabetes hasnt caused my lung problems or any decline i have had. I have the same problems with keeping my blood sugar under control as everyone else. I take Humulin N once a day and have been on that for many years. I also take Humulin R as needed. I eat sweets but only when i am "allowed" when my blood sugar is on the low side. I try not to deny myself of anything i want, i just use portion control and timing control....lol. When i get sick my blood sugar tends to get higher and i try to keep on top of that with extra insulin. I check my blood sugars every single time i am about to eat ( which is about 6 or 7 times a day), so i know what i can and cannot have and how much. I also check after dinner sometimes because that is when my blood sugar tends to be high sometimes depending on what i had for dinner. I also check my blood sugar right before bed so i can try to avoid low blood sugar during sleep. I check my blood sugar a LOT , but i feel that its the only way for me to know whats going on in my body and helps me to gain more control over my blood sugars. Exercise is also very important in diabetes. It helps lower the blood sugar, and is also a must for our lungs, so it is a dual purpose.
 
D

Diane

New member
You may find comfort in my post, i have had diabetes for over 26 years now. I was diagnosed at 15, and had no lung involvment at the time and diabetes did not interfere much once i was on insulin. I did not get any lung involvment till i got older somewhere in my 20's and it was mild. It was also my own fault, since i never did any treatments, and used to sing in a band and stayed out all hours of the night in a smoky bar. I didnt start having any real lung problems till about 9 years ago when i got cepacia. But diabetes hasnt caused my lung problems or any decline i have had. I have the same problems with keeping my blood sugar under control as everyone else. I take Humulin N once a day and have been on that for many years. I also take Humulin R as needed. I eat sweets but only when i am "allowed" when my blood sugar is on the low side. I try not to deny myself of anything i want, i just use portion control and timing control....lol. When i get sick my blood sugar tends to get higher and i try to keep on top of that with extra insulin. I check my blood sugars every single time i am about to eat ( which is about 6 or 7 times a day), so i know what i can and cannot have and how much. I also check after dinner sometimes because that is when my blood sugar tends to be high sometimes depending on what i had for dinner. I also check my blood sugar right before bed so i can try to avoid low blood sugar during sleep. I check my blood sugar a LOT , but i feel that its the only way for me to know whats going on in my body and helps me to gain more control over my blood sugars. Exercise is also very important in diabetes. It helps lower the blood sugar, and is also a must for our lungs, so it is a dual purpose.
 
F

flamejob

New member
paradoxically ... i had untreated diabetes for 5 months .. and my FEV1 climbed to a 10 year high of 2.3 in clinic 10 days ago (only hours before i had my first ever shot of slin) !

although there maybe many factors contributin to the onset of cfrd , the medics still dont fully understand the condition.


<img src="">
 
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flamejob

New member
paradoxically ... i had untreated diabetes for 5 months .. and my FEV1 climbed to a 10 year high of 2.3 in clinic 10 days ago (only hours before i had my first ever shot of slin) !

although there maybe many factors contributin to the onset of cfrd , the medics still dont fully understand the condition.


<img src="">
 
F

flamejob

New member
paradoxically ... i had untreated diabetes for 5 months .. and my FEV1 climbed to a 10 year high of 2.3 in clinic 10 days ago (only hours before i had my first ever shot of slin) !

although there maybe many factors contributin to the onset of cfrd , the medics still dont fully understand the condition.


<img src="">
 
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Rokiss12

New member
thanks everyone for posting, its some what comforting, but im still kinda 'fluffed' over it...

just to make it clear, i was diagnosed 'early' in the sense that im only 16, however, my test that shows how my diabetes has been the past few months...forgetting what its called at the moment, was at 11 when it should be at 7... soo in THAT sense, it was not caught 'early'

i personally suspect that i was pre-diabetic in march, when they suspected me of having a thyroid problem, and they concluded those tests negative. after that, in march i started prednisone, and had been on it the majority of the time between then and august. i have a grudge against my doctor, out of pure human nature. he should have suspected diabetes when my symptoms corilated with thyroid anddd diabetes. he only tested for thyroid. THEN he put me on prednisone. something we all know screws with your sugars.

okay i have to stop writing, im getting every more flustered. thanks though everyone, keep posting. oh and, at this point i really want to have kids, but i know its not in my best interest, so i tell myself i plan on adopting. anywyas... i guess if thats the main factor for health decline, then adopting maybe 'give me a couple more years'? correct me if im wrong.
 
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Rokiss12

New member
thanks everyone for posting, its some what comforting, but im still kinda 'fluffed' over it...

just to make it clear, i was diagnosed 'early' in the sense that im only 16, however, my test that shows how my diabetes has been the past few months...forgetting what its called at the moment, was at 11 when it should be at 7... soo in THAT sense, it was not caught 'early'

i personally suspect that i was pre-diabetic in march, when they suspected me of having a thyroid problem, and they concluded those tests negative. after that, in march i started prednisone, and had been on it the majority of the time between then and august. i have a grudge against my doctor, out of pure human nature. he should have suspected diabetes when my symptoms corilated with thyroid anddd diabetes. he only tested for thyroid. THEN he put me on prednisone. something we all know screws with your sugars.

okay i have to stop writing, im getting every more flustered. thanks though everyone, keep posting. oh and, at this point i really want to have kids, but i know its not in my best interest, so i tell myself i plan on adopting. anywyas... i guess if thats the main factor for health decline, then adopting maybe 'give me a couple more years'? correct me if im wrong.
 
R

Rokiss12

New member
thanks everyone for posting, its some what comforting, but im still kinda 'fluffed' over it...

just to make it clear, i was diagnosed 'early' in the sense that im only 16, however, my test that shows how my diabetes has been the past few months...forgetting what its called at the moment, was at 11 when it should be at 7... soo in THAT sense, it was not caught 'early'

i personally suspect that i was pre-diabetic in march, when they suspected me of having a thyroid problem, and they concluded those tests negative. after that, in march i started prednisone, and had been on it the majority of the time between then and august. i have a grudge against my doctor, out of pure human nature. he should have suspected diabetes when my symptoms corilated with thyroid anddd diabetes. he only tested for thyroid. THEN he put me on prednisone. something we all know screws with your sugars.

okay i have to stop writing, im getting every more flustered. thanks though everyone, keep posting. oh and, at this point i really want to have kids, but i know its not in my best interest, so i tell myself i plan on adopting. anywyas... i guess if thats the main factor for health decline, then adopting maybe 'give me a couple more years'? correct me if im wrong.
 
C

coltsfan715

New member
Hey Kate,

Just wanted to let you know I think the test you are thinking of is your Hemoglobin A1C .. it measures what your blood sugar has run over the past 3-4 months and seems to be on the same scale as you mentioned.

Just so you know with that .. you mentioned that it is supposed to be at 7.0 - that is true in a sense. If your Hemoglobin A1C is measured above 7.0 you are technically diabetic - that is what I have been told by my endocrinologists over the years. The average for someone withOUT diabetes though is 6.2-6.3 that is what they want you to shoot for when controlling your blood sugars. I have also been told that for us CFers we should try to keep that number between 5.5-6.0. I am not quite sure what that breaks down too - meaning if that would be blood sguars 80-110 or 80-120 or what.

A CF endocrinologist I spoke with told me that for the reason I mentioned above .. about high blood sugars causing inflammation and such. He said that it has been shown that "we" function best lung wise when our hemoglobin A1C is in that range (5.5-6.0). That being said mine usually - so long as I am not sick and on steroids - is in the 6.0-6.3 range I have never had that number come back below 6.0.

Lindsey

Hope I didn't confuse you with that just wanted to share.
 
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