cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.
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<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>kybert</b></i>
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
cf patients bodies DO get tired of fighting. its a well known fact. im not sure what stage donovan is at but once you get below around 60% you will be more tired. the more your fev1 drops, the more tired you will get until your life consists of sleeping. once other causes have been ruled out and different treatments have been tried then all one can do is listen to their body and take it easy. find out what makes the tiredness a bit better and what makes it worse.</end quote></div>
My FEV1 has been below 60 for 8 years now. It sits at 48 and the last word anyone would use to describe me is tired. In fact I have more energy now than when my FEV1 was mid 60's and that was because of having infections and severe hemoptysis that destroyed part of my lung. Since having the rest of my left lung removed life has been so much healthier.
Now I am not saying that cf patients bodies do not get tired of fighting but I urge you Donny as others have not to be satisfied with that statement.
I do agree with kybert that other causes need to be ruled out. Do you go to an accredited CF clinic? Are you being routinely tested (sputum cultures, blood work, diabetes, pft's, CAT scans etc...)? Are you complaint with taking your medications and doing treatments (exercise & mucus clearance devices such as the vest, acapella, flutter etc)? Are you suffering from depression?
If your FEV 1 has been going down have you tried Hypertonic Saline? I have found this treatment so very helpful with increasing my FEV 1 which was down to 41-42 before beginning it last April and have felt overall healthier because of this addition to my regimen.
All I am saying is that please do not just accept that there is nothing you can't do to increase your energy. You could very likely have an infection that requires IV's or you are in need a of tuneup. Anything is worth a try.
I do hope that you feel better soon. Let us know how things are going.
This is just an idea, but on top of your current methods of treatment' Have you thought about your diet, we have a juicer machine. That I use for quick pick me ups, and have contemplated giving my daughter some different concogtions to see about her energy level. Problem is she is 3 and has the energy of a 3yr old. Could get your fruit and veggies in a ingsted form so it would get to your system quicker instead of digesting. Just a thought plus big on the extra vitamins. Good luck
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
This is just an idea, but on top of your current methods of treatment' Have you thought about your diet, we have a juicer machine. That I use for quick pick me ups, and have contemplated giving my daughter some different concogtions to see about her energy level. Problem is she is 3 and has the energy of a 3yr old. Could get your fruit and veggies in a ingsted form so it would get to your system quicker instead of digesting. Just a thought plus big on the extra vitamins. Good luck
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
This is just an idea, but on top of your current methods of treatment' Have you thought about your diet, we have a juicer machine. That I use for quick pick me ups, and have contemplated giving my daughter some different concogtions to see about her energy level. Problem is she is 3 and has the energy of a 3yr old. Could get your fruit and veggies in a ingsted form so it would get to your system quicker instead of digesting. Just a thought plus big on the extra vitamins. Good luck
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
Chuck daddy to Avery 3 with CF, Knoxville, TN "Go Vols"
Hey there...I posted a similar thread about this not too long ago. I've been non stop tired for a while now. I'm not anemic and when I told my CF doc, he pretty much said it was because a lung disease takes a lot out of you. As far as how to wake up a little, I can't tell you much...if there's any way to lighten your work load or anything like that, do it. Just try and take it easy, which I know is easier said than done sometimes. If your a junk food junkie, try cutting down and eating a little healthier...for me also, cold weather contributes to fatigue...maybe when the weather's a little warmer, you'll start to feel a little better (that is if you live where it's actually winter and not summer all the time, lol).
hope you feel better
hope you feel better
Hey there...I posted a similar thread about this not too long ago. I've been non stop tired for a while now. I'm not anemic and when I told my CF doc, he pretty much said it was because a lung disease takes a lot out of you. As far as how to wake up a little, I can't tell you much...if there's any way to lighten your work load or anything like that, do it. Just try and take it easy, which I know is easier said than done sometimes. If your a junk food junkie, try cutting down and eating a little healthier...for me also, cold weather contributes to fatigue...maybe when the weather's a little warmer, you'll start to feel a little better (that is if you live where it's actually winter and not summer all the time, lol).
hope you feel better
hope you feel better
Hey there...I posted a similar thread about this not too long ago. I've been non stop tired for a while now. I'm not anemic and when I told my CF doc, he pretty much said it was because a lung disease takes a lot out of you. As far as how to wake up a little, I can't tell you much...if there's any way to lighten your work load or anything like that, do it. Just try and take it easy, which I know is easier said than done sometimes. If your a junk food junkie, try cutting down and eating a little healthier...for me also, cold weather contributes to fatigue...maybe when the weather's a little warmer, you'll start to feel a little better (that is if you live where it's actually winter and not summer all the time, lol).
hope you feel better
hope you feel better
D
donny71
Guest
WOAH!!!
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>
D
donny71
Guest
WOAH!!!
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>
D
donny71
Guest
WOAH!!!
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>
Thanks for the great response... I guess I'll answer a few common questions you have had for me,
<br/>
But first I'll let you know that I had a very long hospital stay last year about 4 months before I graduate and I was on IV for about 3 months or so, also at that time I had my worst episode of coughing up blood, they didn't consider it that bad because it wasn't life threating but ti did scare me ....
<br/>
anyway after that I was hospitalized in the summer for chest pains, and was put on some antibiotics and morphine drip.
<br/>
it was at that point my lung functions dropped and are now in 58% up from 50 in june and down from the beginning of that year they were around 70%.
<br/>
okay now I'll answer your questions,
<br/>
My last hospital stay was at Christmas time (boo), and I believe I got sick there because I had started my first job ever and wasn't aware of how much my body could handle, so I just worked and worked and then i got sick .... so after I got out of the hospital my boss stated my and just 4hr shifts and we went back up from there ... So now I am doing 11:30-4:30 shifts ... which is perfect.
Oh and also I know that its not illness-tiredness because when I am sick I cough A LOT more, congestion, I get headaches and I feel like crap.
<br/>
the CF-coordinator, well she is the lady that sets up the CF 'clinics' she tries to set it up so we don't have to go back and forth to see nutritionist, pulmonary, counselor, etc... you get the idea. she also sits down with each person and takes down their concerns and just has a normal conversation with you to make you feel and home and not so doctor patient relationship but a friend to friend one. and she wasn't being insensitive.
<br/>
My sleep is not too bad, I have a memory foam topper now and that helps me sleep well but my tube feed ends at 5 am ish because if it ends when i get up and get very nauseated and then when i cough in the shower I throw up so thats no good.
<br/>
Whenever I am sick they always do labs and check everything out, and of course I have the every 6 months check up where they check everything out. and of course we do sputum at those times as well and it always comes back the same.
BUT, I may just make an appointment to see if my iron and sugars were checked recently...
<br/>
as for my diet I am rarely hungry and eating is a chore ... this is break down of an average day.
<br/>
tube feed 3 cans of nutrine 2.0 = 1500 calories
<br/>
breakfast scandi shake with whole milk and a fruit = 600 + calories
<br/>
coffee break, 2 boost plus calories, nutrisure pudding, a fruit, granola bar, and other stuff..... = I have no idea haha
<br/>
water... I drink about 2litres of water at work ...
<br/>
snack at work ... a boost and snack type food
<br/>
supper I have a normal supper. ... however many calories that is ...
<br/>
so thats that... oh and I really don't have a sweet tooth, I eat super healthy, and my mom has high cholesterol and blood pressure so you could image we eat healthy ALL the time and rarely have junk food in the house.
<br/>
<br/>
weather... well its winter from end of September to mid March usually, I just went to Hawaii for 10 days and I kind of felt like I had some more energy but not a whole lot.
<br/>
we have done over night O2 monitoring and if dips to 88-90 and I am 93 during the day we tried having o2 on at night and it didn't help and was uncomfortable so that made it kind of hard to sleep.
<br/>
hope this helps and THANK YOU ALL SO MUCH for you responses! they are all MUCH appreciated.
<br/>
<br/>
Donovan
<br/>