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Becoming more real and needing advice

N

ncyra399

Guest
This is my first time posting to this site, so I'm hoping I can find it helpful. I was diagnosed when I was 6 months old and am now 32. My CF has progressed quite a bit in the last few years and has become a lot worse. I was always very "mild" if you will and was able to hide my disease from most if I wanted to. I'm not allowed to do that anymore. This last hospital stay landed me with pneumonia. It gave me portable oxygen that I have to wear anytime I'm not sitting (so all the time), I got CFRD which I've never had before, my doctor gave me a feeding tube b/c i'm not gaining enough weight to satisfy the CF guidelines and there's been talk about transplant. All of this is very new to me as I've always been very independent and very mild. I'm wondering if there is anyone else out there that is dealing with this issues that I could talk to. My feeding tube isn't working and because I was bitter about it in the first place, it's disfunction isn't making me any happier! If I could talk to someone who is dealing with some of the same things, I think it would be helpful. Thank you!

Nicki
 
N

ncyra399

Guest
This is my first time posting to this site, so I'm hoping I can find it helpful. I was diagnosed when I was 6 months old and am now 32. My CF has progressed quite a bit in the last few years and has become a lot worse. I was always very "mild" if you will and was able to hide my disease from most if I wanted to. I'm not allowed to do that anymore. This last hospital stay landed me with pneumonia. It gave me portable oxygen that I have to wear anytime I'm not sitting (so all the time), I got CFRD which I've never had before, my doctor gave me a feeding tube b/c i'm not gaining enough weight to satisfy the CF guidelines and there's been talk about transplant. All of this is very new to me as I've always been very independent and very mild. I'm wondering if there is anyone else out there that is dealing with this issues that I could talk to. My feeding tube isn't working and because I was bitter about it in the first place, it's disfunction isn't making me any happier! If I could talk to someone who is dealing with some of the same things, I think it would be helpful. Thank you!

Nicki
 
N

ncyra399

Guest
This is my first time posting to this site, so I'm hoping I can find it helpful. I was diagnosed when I was 6 months old and am now 32. My CF has progressed quite a bit in the last few years and has become a lot worse. I was always very "mild" if you will and was able to hide my disease from most if I wanted to. I'm not allowed to do that anymore. This last hospital stay landed me with pneumonia. It gave me portable oxygen that I have to wear anytime I'm not sitting (so all the time), I got CFRD which I've never had before, my doctor gave me a feeding tube b/c i'm not gaining enough weight to satisfy the CF guidelines and there's been talk about transplant. All of this is very new to me as I've always been very independent and very mild. I'm wondering if there is anyone else out there that is dealing with this issues that I could talk to. My feeding tube isn't working and because I was bitter about it in the first place, it's disfunction isn't making me any happier! If I could talk to someone who is dealing with some of the same things, I think it would be helpful. Thank you!

Nicki
 
N

ncyra399

Guest
This is my first time posting to this site, so I'm hoping I can find it helpful. I was diagnosed when I was 6 months old and am now 32. My CF has progressed quite a bit in the last few years and has become a lot worse. I was always very "mild" if you will and was able to hide my disease from most if I wanted to. I'm not allowed to do that anymore. This last hospital stay landed me with pneumonia. It gave me portable oxygen that I have to wear anytime I'm not sitting (so all the time), I got CFRD which I've never had before, my doctor gave me a feeding tube b/c i'm not gaining enough weight to satisfy the CF guidelines and there's been talk about transplant. All of this is very new to me as I've always been very independent and very mild. I'm wondering if there is anyone else out there that is dealing with this issues that I could talk to. My feeding tube isn't working and because I was bitter about it in the first place, it's disfunction isn't making me any happier! If I could talk to someone who is dealing with some of the same things, I think it would be helpful. Thank you!

Nicki
 
N

ncyra399

Guest
This is my first time posting to this site, so I'm hoping I can find it helpful. I was diagnosed when I was 6 months old and am now 32. My CF has progressed quite a bit in the last few years and has become a lot worse. I was always very "mild" if you will and was able to hide my disease from most if I wanted to. I'm not allowed to do that anymore. This last hospital stay landed me with pneumonia. It gave me portable oxygen that I have to wear anytime I'm not sitting (so all the time), I got CFRD which I've never had before, my doctor gave me a feeding tube b/c i'm not gaining enough weight to satisfy the CF guidelines and there's been talk about transplant. All of this is very new to me as I've always been very independent and very mild. I'm wondering if there is anyone else out there that is dealing with this issues that I could talk to. My feeding tube isn't working and because I was bitter about it in the first place, it's disfunction isn't making me any happier! If I could talk to someone who is dealing with some of the same things, I think it would be helpful. Thank you!
<br />
<br />Nicki
 
J

jfarel

New member
I've had all the of the same issues develop over the last couple years as well. I have g-tube, started using 02 intermittently (sp), just got a port inserted in my arm, and have been evaluated for the transplant list. It's tough no doubt, but my support from the cf website and friends has family has been good. Please PM me if you have specific questions.
 
J

jfarel

New member
I've had all the of the same issues develop over the last couple years as well. I have g-tube, started using 02 intermittently (sp), just got a port inserted in my arm, and have been evaluated for the transplant list. It's tough no doubt, but my support from the cf website and friends has family has been good. Please PM me if you have specific questions.
 
J

jfarel

New member
I've had all the of the same issues develop over the last couple years as well. I have g-tube, started using 02 intermittently (sp), just got a port inserted in my arm, and have been evaluated for the transplant list. It's tough no doubt, but my support from the cf website and friends has family has been good. Please PM me if you have specific questions.
 
J

jfarel

New member
I've had all the of the same issues develop over the last couple years as well. I have g-tube, started using 02 intermittently (sp), just got a port inserted in my arm, and have been evaluated for the transplant list. It's tough no doubt, but my support from the cf website and friends has family has been good. Please PM me if you have specific questions.
 
J

jfarel

New member
I've had all the of the same issues develop over the last couple years as well. I have g-tube, started using 02 intermittently (sp), just got a port inserted in my arm, and have been evaluated for the transplant list. It's tough no doubt, but my support from the cf website and friends has family has been good. Please PM me if you have specific questions.
 
S

Skye

New member
I had some of your same experiences 2 years ago. I was in a new city with a new doctor and landed in the hospital with pneumonia, O2 full-time, and mention of a transplant. This was after years of well-controlled CF. I can say two years later that it has gotten much better for me. It has not been an easy road; but, my quality of life now is quite good. I worked very hard though to get my questions answered, to do the transplant work-up, and do exactly what the docs were telling me to do. My goal now is to stay off the tranpslant list<img src="i/expressions/face-icon-small-smile.gif" border="0"> Pleast PM me if you would like to chat. I am glad you have come here for support!
 
S

Skye

New member
I had some of your same experiences 2 years ago. I was in a new city with a new doctor and landed in the hospital with pneumonia, O2 full-time, and mention of a transplant. This was after years of well-controlled CF. I can say two years later that it has gotten much better for me. It has not been an easy road; but, my quality of life now is quite good. I worked very hard though to get my questions answered, to do the transplant work-up, and do exactly what the docs were telling me to do. My goal now is to stay off the tranpslant list<img src="i/expressions/face-icon-small-smile.gif" border="0"> Pleast PM me if you would like to chat. I am glad you have come here for support!
 
S

Skye

New member
I had some of your same experiences 2 years ago. I was in a new city with a new doctor and landed in the hospital with pneumonia, O2 full-time, and mention of a transplant. This was after years of well-controlled CF. I can say two years later that it has gotten much better for me. It has not been an easy road; but, my quality of life now is quite good. I worked very hard though to get my questions answered, to do the transplant work-up, and do exactly what the docs were telling me to do. My goal now is to stay off the tranpslant list<img src="i/expressions/face-icon-small-smile.gif" border="0"> Pleast PM me if you would like to chat. I am glad you have come here for support!
 
S

Skye

New member
I had some of your same experiences 2 years ago. I was in a new city with a new doctor and landed in the hospital with pneumonia, O2 full-time, and mention of a transplant. This was after years of well-controlled CF. I can say two years later that it has gotten much better for me. It has not been an easy road; but, my quality of life now is quite good. I worked very hard though to get my questions answered, to do the transplant work-up, and do exactly what the docs were telling me to do. My goal now is to stay off the tranpslant list<img src="i/expressions/face-icon-small-smile.gif" border="0"> Pleast PM me if you would like to chat. I am glad you have come here for support!
 
S

Skye

New member
I had some of your same experiences 2 years ago. I was in a new city with a new doctor and landed in the hospital with pneumonia, O2 full-time, and mention of a transplant. This was after years of well-controlled CF. I can say two years later that it has gotten much better for me. It has not been an easy road; but, my quality of life now is quite good. I worked very hard though to get my questions answered, to do the transplant work-up, and do exactly what the docs were telling me to do. My goal now is to stay off the tranpslant list<img src="i/expressions/face-icon-small-smile.gif" border="0"> Pleast PM me if you would like to chat. I am glad you have come here for support!
 
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