Newly Diagnosed

[donnadee]

Hi my name is Donna, I am 33yo and I just found out that I have CF
in March of 2006.  I have always gotten pneumonia and
brochitis several times a year and a lot if GI problems and
surgeries.  I have gone down hill since December.  My
FEVC went from 56 in December to 28 now.  I am very scared
that my lung functions are not gonna come back.  I am trying
to exercise, but I just get so short of breath it is scarey.
 At first I was not doing all the treatments right, denial I
guess, but now I am and not getting much better.  Does anyone
have any suggestions.  Anything would be appreciated.<br>
<br>

 

[donnadee]

Hi my name is Donna, I am 33yo and I just found out that I have CF
in March of 2006.  I have always gotten pneumonia and
brochitis several times a year and a lot if GI problems and
surgeries.  I have gone down hill since December.  My
FEVC went from 56 in December to 28 now.  I am very scared
that my lung functions are not gonna come back.  I am trying
to exercise, but I just get so short of breath it is scarey.
 At first I was not doing all the treatments right, denial I
guess, but now I am and not getting much better.  Does anyone
have any suggestions.  Anything would be appreciated.<br>
<br>

 

[donnadee]

Hi my name is Donna, I am 33yo and I just found out that I have CF
in March of 2006.  I have always gotten pneumonia and
brochitis several times a year and a lot if GI problems and
surgeries.  I have gone down hill since December.  My
FEVC went from 56 in December to 28 now.  I am very scared
that my lung functions are not gonna come back.  I am trying
to exercise, but I just get so short of breath it is scarey.
 At first I was not doing all the treatments right, denial I
guess, but now I am and not getting much better.  Does anyone
have any suggestions.  Anything would be appreciated.<br>
<br>

 

[JazzysMom]

It is scary & frustrating when you work hard & get no where fast with your health. I had this problem last year. No matter what I did I kept having problems & it scared the hell out of me. Sometimes we just have times that everything works against us & then all of sudden things click & finally we see progress. Jane from the forum has 2 sons with CF who have been to hell & back. It was one thing after another & they FINALLY got a break & feel like all the effort wasnt in vain. Just keeping doing the treatments, resting, drinking fluids & exercise the best that you can. I know its hard not to dwell on the negative when you feel like crap or you see your health declining, but trying to keep a positive or as positive attitude as possible does help. We all have bad days, weeks & months. Dont get me wrong. I have my moments & during those times I tend to come on here & write in my blog or chat with someone from here. Even tho my husband is great. He cant completley understand from MY aspect so I love having my extended family to reach to. Good Luck, Keep us updated & please shout if you need support!

 

[JazzysMom]

It is scary & frustrating when you work hard & get no where fast with your health. I had this problem last year. No matter what I did I kept having problems & it scared the hell out of me. Sometimes we just have times that everything works against us & then all of sudden things click & finally we see progress. Jane from the forum has 2 sons with CF who have been to hell & back. It was one thing after another & they FINALLY got a break & feel like all the effort wasnt in vain. Just keeping doing the treatments, resting, drinking fluids & exercise the best that you can. I know its hard not to dwell on the negative when you feel like crap or you see your health declining, but trying to keep a positive or as positive attitude as possible does help. We all have bad days, weeks & months. Dont get me wrong. I have my moments & during those times I tend to come on here & write in my blog or chat with someone from here. Even tho my husband is great. He cant completley understand from MY aspect so I love having my extended family to reach to. Good Luck, Keep us updated & please shout if you need support!

 

[JazzysMom]

It is scary & frustrating when you work hard & get no where fast with your health. I had this problem last year. No matter what I did I kept having problems & it scared the hell out of me. Sometimes we just have times that everything works against us & then all of sudden things click & finally we see progress. Jane from the forum has 2 sons with CF who have been to hell & back. It was one thing after another & they FINALLY got a break & feel like all the effort wasnt in vain. Just keeping doing the treatments, resting, drinking fluids & exercise the best that you can. I know its hard not to dwell on the negative when you feel like crap or you see your health declining, but trying to keep a positive or as positive attitude as possible does help. We all have bad days, weeks & months. Dont get me wrong. I have my moments & during those times I tend to come on here & write in my blog or chat with someone from here. Even tho my husband is great. He cant completley understand from MY aspect so I love having my extended family to reach to. Good Luck, Keep us updated & please shout if you need support!

 

[donnadee]

Thank you so much for the encouraging words.  It helps alot.
 I do have a great support system at home, my parents and my
boyfriend are wonderful, but it is like you said they do not fully
understand.  Thank you for listening.

 

[donnadee]

Thank you so much for the encouraging words.  It helps alot.
 I do have a great support system at home, my parents and my
boyfriend are wonderful, but it is like you said they do not fully
understand.  Thank you for listening.

 

[donnadee]

Thank you so much for the encouraging words.  It helps alot.
 I do have a great support system at home, my parents and my
boyfriend are wonderful, but it is like you said they do not fully
understand.  Thank you for listening.

 

[CowTown]

Hi,

I would imagine that is very scary, having just found out about your CF. Just so you know, anyone can drop in lung function and have very low points, and with the right medications you can get a lot better and your PFTs can improve. They might not get as high as before, but those numbers can shift drastrically and yet still bounce back sometimes. Are they still taking sputum cultures to figure out what exactly is going on in your lungs right now? My PFTs have dropped quite a bit in the past year, and they finally figured out what the cause was (which bug was bringing me down) and once I started on the right medications, I've been getting better ever since and my PFTs are in the process of going up.

I know how when you're sick and feeling well that exercise is one of the last things you feel like doing or can even physically do. Keep on trying though, and do as much as you can. It's good you're not in denial anymore, b/c your dedication to mediations and the Vest (do you have one?) and trying to exericse could make a world of a difference. I wish you luck!!!! Let me know if you ever want to chat about stuff! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CowTown]

Hi,

I would imagine that is very scary, having just found out about your CF. Just so you know, anyone can drop in lung function and have very low points, and with the right medications you can get a lot better and your PFTs can improve. They might not get as high as before, but those numbers can shift drastrically and yet still bounce back sometimes. Are they still taking sputum cultures to figure out what exactly is going on in your lungs right now? My PFTs have dropped quite a bit in the past year, and they finally figured out what the cause was (which bug was bringing me down) and once I started on the right medications, I've been getting better ever since and my PFTs are in the process of going up.

I know how when you're sick and feeling well that exercise is one of the last things you feel like doing or can even physically do. Keep on trying though, and do as much as you can. It's good you're not in denial anymore, b/c your dedication to mediations and the Vest (do you have one?) and trying to exericse could make a world of a difference. I wish you luck!!!! Let me know if you ever want to chat about stuff! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CowTown]

Hi,

I would imagine that is very scary, having just found out about your CF. Just so you know, anyone can drop in lung function and have very low points, and with the right medications you can get a lot better and your PFTs can improve. They might not get as high as before, but those numbers can shift drastrically and yet still bounce back sometimes. Are they still taking sputum cultures to figure out what exactly is going on in your lungs right now? My PFTs have dropped quite a bit in the past year, and they finally figured out what the cause was (which bug was bringing me down) and once I started on the right medications, I've been getting better ever since and my PFTs are in the process of going up.

I know how when you're sick and feeling well that exercise is one of the last things you feel like doing or can even physically do. Keep on trying though, and do as much as you can. It's good you're not in denial anymore, b/c your dedication to mediations and the Vest (do you have one?) and trying to exericse could make a world of a difference. I wish you luck!!!! Let me know if you ever want to chat about stuff! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[donnadee]

Hey Kelly,  <br>
<br>
Thanks for the info, it gives me hope that they will come back up.
 Everytime they check the sputum it is always pseudomonias.
 I do have a vest and I have been alot better about using it
2x a day for 20 mins.  I go back to the MD's on 11/08 for a
f/u, so I am working real hard to get some exercise, to see if that
will help.<br>
<br>
Thanks for listening,<br>
<br>
Donna

 

[donnadee]

Hey Kelly,  <br>
<br>
Thanks for the info, it gives me hope that they will come back up.
 Everytime they check the sputum it is always pseudomonias.
 I do have a vest and I have been alot better about using it
2x a day for 20 mins.  I go back to the MD's on 11/08 for a
f/u, so I am working real hard to get some exercise, to see if that
will help.<br>
<br>
Thanks for listening,<br>
<br>
Donna

 

[donnadee]

Hey Kelly,  <br>
<br>
Thanks for the info, it gives me hope that they will come back up.
 Everytime they check the sputum it is always pseudomonias.
 I do have a vest and I have been alot better about using it
2x a day for 20 mins.  I go back to the MD's on 11/08 for a
f/u, so I am working real hard to get some exercise, to see if that
will help.<br>
<br>
Thanks for listening,<br>
<br>
Donna

 

[CowTown]

Oh good for you. Good luck at the appointment! Just FYI, it's the FEV1 numbers that they look at more. And whe you hear people on this site talking about their PFT #s, that's what they're referring to, their FEV1, not FEVC. Just so you know.

 

[CowTown]

Oh good for you. Good luck at the appointment! Just FYI, it's the FEV1 numbers that they look at more. And whe you hear people on this site talking about their PFT #s, that's what they're referring to, their FEV1, not FEVC. Just so you know.

 

[CowTown]

Oh good for you. Good luck at the appointment! Just FYI, it's the FEV1 numbers that they look at more. And whe you hear people on this site talking about their PFT #s, that's what they're referring to, their FEV1, not FEVC. Just so you know.

 

[tleigh]

Donna,<br>
Welcome-even though you got here through not so ideal
circumstances, please understand that there is so much hope out
there for us CF'ers.  Be willing to ask your docs about other
options.  Sometimes it takes a little bit for them and you to
understand how your lungs react.  For instance, I have very
reactive airways-so sometimes when I get a drop in #'s it could be
a bug I'm fighting or it could be an asthma flare-up.  Hang in
there-keep on keeping on-it does pay off!

 

[tleigh]

Donna,<br>
Welcome-even though you got here through not so ideal
circumstances, please understand that there is so much hope out
there for us CF'ers.  Be willing to ask your docs about other
options.  Sometimes it takes a little bit for them and you to
understand how your lungs react.  For instance, I have very
reactive airways-so sometimes when I get a drop in #'s it could be
a bug I'm fighting or it could be an asthma flare-up.  Hang in
there-keep on keeping on-it does pay off!