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T
tarheel
Guest
I completely agree Harriett. And yet, there are balances within balances. I do think that a large part of my decline is from developing CFRD that went undetected until we specifically asked for testing. The oral test actually spiked too high too fast, so we did the CGM (IPro device) and found that although I didn't have drastic highs and lows, my overall blood sugars were high. Digestive health hasn't been an issue for me since I was about seven or so, and I've always been really compliant in my care (my mom is a nurse and she DEFINATELY understands how important infection control and compliance are) and good at sterilizing my machinery. Unfortunately although my CFRD is now under control, we still haven't seen my FEV1 bounce back to anywhere near where it was. On the other hand, I wonder about clinics that push patients to do, do, do- chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? Such big questions that no one knows the answer to. Thank you all for all your input.
T
tarheel
Guest
I completely agree Harriett. And yet, there are balances within balances. I do think that a large part of my decline is from developing CFRD that went undetected until we specifically asked for testing. The oral test actually spiked too high too fast, so we did the CGM (IPro device) and found that although I didn't have drastic highs and lows, my overall blood sugars were high. Digestive health hasn't been an issue for me since I was about seven or so, and I've always been really compliant in my care (my mom is a nurse and she DEFINATELY understands how important infection control and compliance are) and good at sterilizing my machinery. Unfortunately although my CFRD is now under control, we still haven't seen my FEV1 bounce back to anywhere near where it was. On the other hand, I wonder about clinics that push patients to do, do, do- chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? Such big questions that no one knows the answer to. Thank you all for all your input.
T
tarheel
Guest
I completely agree Harriett. And yet, there are balances within balances. I do think that a large part of my decline is from developing CFRD that went undetected until we specifically asked for testing. The oral test actually spiked too high too fast, so we did the CGM (IPro device) and found that although I didn't have drastic highs and lows, my overall blood sugars were high. Digestive health hasn't been an issue for me since I was about seven or so, and I've always been really compliant in my care (my mom is a nurse and she DEFINATELY understands how important infection control and compliance are) and good at sterilizing my machinery. Unfortunately although my CFRD is now under control, we still haven't seen my FEV1 bounce back to anywhere near where it was. On the other hand, I wonder about clinics that push patients to do, do, do- chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? Such big questions that no one knows the answer to. Thank you all for all your input.
B
benthyrdeeders
Guest
Diagnosed in Maine (unsure the name of hospital)
Born 1964 moved to Vermont in 1969
DDF508
I'm guessing 80, now 60 since I've been aware of what it meant.
____________________________________________________________
45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
Born 1964 moved to Vermont in 1969
DDF508
I'm guessing 80, now 60 since I've been aware of what it meant.
____________________________________________________________
45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
B
benthyrdeeders
Guest
Diagnosed in Maine (unsure the name of hospital)
Born 1964 moved to Vermont in 1969
DDF508
I'm guessing 80, now 60 since I've been aware of what it meant.
____________________________________________________________
45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
Born 1964 moved to Vermont in 1969
DDF508
I'm guessing 80, now 60 since I've been aware of what it meant.
____________________________________________________________
45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
B
benthyrdeeders
Guest
Diagnosed in Maine (unsure the name of hospital)
<br />Born 1964 moved to Vermont in 1969
<br />DDF508
<br />I'm guessing 80, now 60 since I've been aware of what it meant.
<br />
<br />
<br />____________________________________________________________
<br />45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
<br />Born 1964 moved to Vermont in 1969
<br />DDF508
<br />I'm guessing 80, now 60 since I've been aware of what it meant.
<br />
<br />
<br />____________________________________________________________
<br />45 yrold w/cf, DDF508, mother of two healthy sons, grandaughter on the way in Oct.
theLostMiler
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>
chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote></div>
I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
#2) 1987
#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote></div>
I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
#2) 1987
#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
theLostMiler
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>
chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote>
I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
#2) 1987
#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote>
I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
#2) 1987
#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
theLostMiler
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>tarheel</b></i>
<br /> chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote>
<br />
<br />I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
<br />
<br />
<br />#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
<br />
<br />#2) 1987
<br />
<br />#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
<br />
<br />#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
<br /> chronic disease fatigue syndrome is a very unrecognized and untraced part of life with CF. It's when you just- get tired or doing it all. And this links in mental health. What good is great lung function if you don't enjoy life and spend it anxious, depressed, stressed, and angry? </end quote>
<br />
<br />I have a pre med school friend who was telling me that there is research about CFF that is may be viral, almost related to a slow slow acting HIV. But I think it was mentioned in one her club meetings just as a discussion/learning topic.
<br />
<br />
<br />#1) Reno, NV area (a ped cf doctor from oakland's cf center flies to reno once a month and has a clinic there for asthma and cf'ers. also for the first 14 or so years I didnt do treatments b/c when I was a baby my uncle who was an RT told my mom not to do treatments unless I was sick b/c the meds were hard on the heart and I was more digestive affected then than respiratory)
<br />
<br />#2) 1987
<br />
<br />#3)I know one of them is DF508 but uncertain on the other one b/c my mom doesnt remember
<br />
<br />#4) I was in the 50's percent-wise and now I am in upper 30's, low 40's... although I cultured b. cepacia after leaving the ped clinic
<div class="FTQUOTE"><begin quote>Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)</end quote></div>
I went to the Children's Hospital of Philadelphia
<div class="FTQUOTE"><begin quote>When were you born?</end quote></div>
Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote></div>
It never really concerned me to find out; I'm not defined by any numbers.
<div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote></div>
I can only guess my FEV1's were good when I was younger, but as of now they are 69%
I went to the Children's Hospital of Philadelphia
<div class="FTQUOTE"><begin quote>When were you born?</end quote></div>
Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote></div>
It never really concerned me to find out; I'm not defined by any numbers.
<div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote></div>
I can only guess my FEV1's were good when I was younger, but as of now they are 69%
<div class="FTQUOTE"><begin quote>Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)</end quote>
I went to the Children's Hospital of Philadelphia
<div class="FTQUOTE"><begin quote>When were you born?</end quote>
Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote>
It never really concerned me to find out; I'm not defined by any numbers.
<div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote>
I can only guess my FEV1's were good when I was younger, but as of now they are 69%
I went to the Children's Hospital of Philadelphia
<div class="FTQUOTE"><begin quote>When were you born?</end quote>
Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote>
It never really concerned me to find out; I'm not defined by any numbers.
<div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote>
I can only guess my FEV1's were good when I was younger, but as of now they are 69%
<div class="FTQUOTE"><begin quote>Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)</end quote>
<br />
<br />I went to the Children's Hospital of Philadelphia
<br />
<br /><div class="FTQUOTE"><begin quote>When were you born?</end quote>
<br />
<br />Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote>
<br />
<br />It never really concerned me to find out; I'm not defined by any numbers.
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote>
<br />
<br />I can only guess my FEV1's were good when I was younger, but as of now they are 69%
<br />
<br />I went to the Children's Hospital of Philadelphia
<br />
<br /><div class="FTQUOTE"><begin quote>When were you born?</end quote>
<br />
<br />Ahh what a small world it truly is, I see we're both scorpios. 10/26/1979
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>What are your mutations? (Or, scaled down, do you have DF508?)</end quote>
<br />
<br />It never really concerned me to find out; I'm not defined by any numbers.
<br />
<br />
<br />
<br /><div class="FTQUOTE"><begin quote>What was your FEV1 %pred when you left your children's center for adult care? What is it now?</end quote>
<br />
<br />I can only guess my FEV1's were good when I was younger, but as of now they are 69%
Mallymookcf
New member
1.) born at Vanderbilt Childrens Hospital
2.) 1985
3.) DF508
4.) was 115, now mid to low 90s.
2.) 1985
3.) DF508
4.) was 115, now mid to low 90s.
Mallymookcf
New member
1.) born at Vanderbilt Childrens Hospital
2.) 1985
3.) DF508
4.) was 115, now mid to low 90s.
2.) 1985
3.) DF508
4.) was 115, now mid to low 90s.
Mallymookcf
New member
1.) born at Vanderbilt Childrens Hospital
<br />2.) 1985
<br />3.) DF508
<br />4.) was 115, now mid to low 90s.
<br />2.) 1985
<br />3.) DF508
<br />4.) was 115, now mid to low 90s.