I'm trying REALLY hard to not let CF get me down

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colinmaydahl

New member
Where are You from Pat? That is great that your PFT's are still so good. The Cayston is great, very fast and quiet. I have starting reaching out to other CFers more and it feels good to know that we are not alone. One day at a time. Love what You have in life not what You don't have.
<br />
<br />Colin
 
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windex125

Guest
I live in NYC you made my day saying 40-50 was a good number, when I read people at 70-80% I think OMG that is something.But I have only 1 functioning lung the right is completely diseased from the MAC and does not even show up on the xray anymore. Very strange. I've talked with my doctor yrs ago about removing it but not a option at this point.
 
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windex125

Guest
I live in NYC you made my day saying 40-50 was a good number, when I read people at 70-80% I think OMG that is something.But I have only 1 functioning lung the right is completely diseased from the MAC and does not even show up on the xray anymore. Very strange. I've talked with my doctor yrs ago about removing it but not a option at this point.
 
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windex125

Guest
I live in NYC you made my day saying 40-50 was a good number, when I read people at 70-80% I think OMG that is something.But I have only 1 functioning lung the right is completely diseased from the MAC and does not even show up on the xray anymore. Very strange. I've talked with my doctor yrs ago about removing it but not a option at this point.
 
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colinmaydahl

New member
Well I'm only 28 and I'm in the low 60's on a good day, and have been on IV's for most of the summer and I'm locked up again. Being from NYC have You ever gone to a restrant called Shopsin's? Check out the movie about it "I like killing flys" Just looks like a great place to eat. Do You read Pipers blog about her TX? <a target=_blank class=ftalternatingbarlinklarge href="http://amatteroflifeandbreath.blogspot.com/.">http://amatteroflifeandbreath.blogspot.com/.</a> I started my own blog a few months ago www.sickcyclist.com
 
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colinmaydahl

New member
Well I'm only 28 and I'm in the low 60's on a good day, and have been on IV's for most of the summer and I'm locked up again. Being from NYC have You ever gone to a restrant called Shopsin's? Check out the movie about it "I like killing flys" Just looks like a great place to eat. Do You read Pipers blog about her TX? <a target=_blank class=ftalternatingbarlinklarge href="http://amatteroflifeandbreath.blogspot.com/.">http://amatteroflifeandbreath.blogspot.com/.</a> I started my own blog a few months ago www.sickcyclist.com
 
C

colinmaydahl

New member
Well I'm only 28 and I'm in the low 60's on a good day, and have been on IV's for most of the summer and I'm locked up again. Being from NYC have You ever gone to a restrant called Shopsin's? Check out the movie about it "I like killing flys" Just looks like a great place to eat. Do You read Pipers blog about her TX? <a target=_blank class=ftalternatingbarlinklarge href="http://amatteroflifeandbreath.blogspot.com/.">http://amatteroflifeandbreath.blogspot.com/.</a> I started my own blog a few months ago www.sickcyclist.com
 
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Printer

Active member
Hi:

I'm male 70 years old with CF. I started college in September of 1960 and received my BS in September 1977. My lung function is 73% and along with CF I also have MAC. I know what hospital time is all about.

Thursday was my 48th wedding anniversary.

In short, you will do well to prepare for a long life, and live all of it to your greatest enjoyment.

Remember you are not the first person with CF but the cure will be in your lifetime.

Best of wishes to you,

Bill
 
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Printer

Active member
Hi:

I'm male 70 years old with CF. I started college in September of 1960 and received my BS in September 1977. My lung function is 73% and along with CF I also have MAC. I know what hospital time is all about.

Thursday was my 48th wedding anniversary.

In short, you will do well to prepare for a long life, and live all of it to your greatest enjoyment.

Remember you are not the first person with CF but the cure will be in your lifetime.

Best of wishes to you,

Bill
 
P

Printer

Active member
Hi:
<br />
<br />I'm male 70 years old with CF. I started college in September of 1960 and received my BS in September 1977. My lung function is 73% and along with CF I also have MAC. I know what hospital time is all about.
<br />
<br />Thursday was my 48th wedding anniversary.
<br />
<br />In short, you will do well to prepare for a long life, and live all of it to your greatest enjoyment.
<br />
<br />Remember you are not the first person with CF but the cure will be in your lifetime.
<br />
<br />Best of wishes to you,
<br />
<br />Bill
 
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kgfrompa

Guest
Hi My name is Kathy and i have to say there are times when CF is just to much. I was in the hospital for the start of IV antibiotics and more than one person said to me oh you look so good you dont look sick! Mean while I am feeling progressively worse i have no energy. Not to mention that i have a port in. Well last night i had a coughing attack and the chills that i set up my elerctric blanket and thank god i feel some what better. I try to look at the bigger picture of this will pass i will feel better soon.It is not easy and I must say thank you for all the honesty and openess because i dont know how to deal with CF and i sometimes think geez am i alone? Yes it is really hard to deal but knowing that i am not the only one makes it a bit easyier for me .
 
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kgfrompa

Guest
Hi My name is Kathy and i have to say there are times when CF is just to much. I was in the hospital for the start of IV antibiotics and more than one person said to me oh you look so good you dont look sick! Mean while I am feeling progressively worse i have no energy. Not to mention that i have a port in. Well last night i had a coughing attack and the chills that i set up my elerctric blanket and thank god i feel some what better. I try to look at the bigger picture of this will pass i will feel better soon.It is not easy and I must say thank you for all the honesty and openess because i dont know how to deal with CF and i sometimes think geez am i alone? Yes it is really hard to deal but knowing that i am not the only one makes it a bit easyier for me .
 
K

kgfrompa

Guest
Hi My name is Kathy and i have to say there are times when CF is just to much. I was in the hospital for the start of IV antibiotics and more than one person said to me oh you look so good you dont look sick! Mean while I am feeling progressively worse i have no energy. Not to mention that i have a port in. Well last night i had a coughing attack and the chills that i set up my elerctric blanket and thank god i feel some what better. I try to look at the bigger picture of this will pass i will feel better soon.It is not easy and I must say thank you for all the honesty and openess because i dont know how to deal with CF and i sometimes think geez am i alone? Yes it is really hard to deal but knowing that i am not the only one makes it a bit easyier for me .
 
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kristenb

New member
b12bc:

oh my gosh, i wish i could take away your pain and frustration. please keep visiting us on this site when you're getting overwhelmed-because that's exactly what chronic illness can feel like sometimes--overwhelming!! you are not alone and we understand. just try and give yourself some time to let this new dx sink in and then tackle it head on-like you have everything else! and please, please, try and get your body some well-deserved rest.

when i was dx'd w/ cfrd i remember feeling the worst i had ever felt and having no energy at all. i also remember quite clearly not being able to 'shake' an illness that i had. something to keep in mind as you navigate the new world of diabetes: as your blood sugars even out you will hopefully begin to have more energy and feel better. i am sorry for your new dx--that sucks! pm me if you want to talk or have any cfrd questions. take care.
 
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kristenb

New member
b12bc:

oh my gosh, i wish i could take away your pain and frustration. please keep visiting us on this site when you're getting overwhelmed-because that's exactly what chronic illness can feel like sometimes--overwhelming!! you are not alone and we understand. just try and give yourself some time to let this new dx sink in and then tackle it head on-like you have everything else! and please, please, try and get your body some well-deserved rest.

when i was dx'd w/ cfrd i remember feeling the worst i had ever felt and having no energy at all. i also remember quite clearly not being able to 'shake' an illness that i had. something to keep in mind as you navigate the new world of diabetes: as your blood sugars even out you will hopefully begin to have more energy and feel better. i am sorry for your new dx--that sucks! pm me if you want to talk or have any cfrd questions. take care.
 
K

kristenb

New member
b12bc:
<br />
<br />oh my gosh, i wish i could take away your pain and frustration. please keep visiting us on this site when you're getting overwhelmed-because that's exactly what chronic illness can feel like sometimes--overwhelming!! you are not alone and we understand. just try and give yourself some time to let this new dx sink in and then tackle it head on-like you have everything else! and please, please, try and get your body some well-deserved rest.
<br />
<br />when i was dx'd w/ cfrd i remember feeling the worst i had ever felt and having no energy at all. i also remember quite clearly not being able to 'shake' an illness that i had. something to keep in mind as you navigate the new world of diabetes: as your blood sugars even out you will hopefully begin to have more energy and feel better. i am sorry for your new dx--that sucks! pm me if you want to talk or have any cfrd questions. take care.
 
B

b12bc

New member
Thanks so much every one. I havent been on for a couple of days to check in, on friday night I spiked a very very high fever and was coughing and vomiting all night. Early saturday AM I had a seizure and was admitted to ICU, got out last night. We don't know if it is a reaction to something or caused by something else, my CF is very atypical. I will try to be on here soon when I am thinking a bit clearer.
 
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