Coping with Cepacia

[mander31880]

I am 29 w/CF and have been relatively well with the exception of a couple hospital visits per year. My pft's currently are around 55-60%. My last culture showed cepacia and I have really had a hard time dealing with it mentally. I just always knew that when my lungs are bad enough I will get a lung transplant and things will be great. Now, that doesn't seem a option and there are no second chances. Does anyone have any words of wisdom to help cope with these fears?

 

[mander31880]

I am 29 w/CF and have been relatively well with the exception of a couple hospital visits per year. My pft's currently are around 55-60%. My last culture showed cepacia and I have really had a hard time dealing with it mentally. I just always knew that when my lungs are bad enough I will get a lung transplant and things will be great. Now, that doesn't seem a option and there are no second chances. Does anyone have any words of wisdom to help cope with these fears?

 

[mander31880]

I am 29 w/CF and have been relatively well with the exception of a couple hospital visits per year. My pft's currently are around 55-60%. My last culture showed cepacia and I have really had a hard time dealing with it mentally. I just always knew that when my lungs are bad enough I will get a lung transplant and things will be great. Now, that doesn't seem a option and there are no second chances. Does anyone have any words of wisdom to help cope with these fears?

 

[mander31880]

I am 29 w/CF and have been relatively well with the exception of a couple hospital visits per year. My pft's currently are around 55-60%. My last culture showed cepacia and I have really had a hard time dealing with it mentally. I just always knew that when my lungs are bad enough I will get a lung transplant and things will be great. Now, that doesn't seem a option and there are no second chances. Does anyone have any words of wisdom to help cope with these fears?

 

[mander31880]

I am 29 w/CF and have been relatively well with the exception of a couple hospital visits per year. My pft's currently are around 55-60%. My last culture showed cepacia and I have really had a hard time dealing with it mentally. I just always knew that when my lungs are bad enough I will get a lung transplant and things will be great. Now, that doesn't seem a option and there are no second chances. Does anyone have any words of wisdom to help cope with these fears?

 

[NYCLawGirl]

i don't have cepacia, but hopefully this will help:

<a target=_blank class=ftalternatingbarlinklarge href="http://jamiebug.blogspot.com/
">http://jamiebug.blogspot.com/
</a>
that's the personal blog of a post-tx cepacia cfer. she has been doing really well. and just because some centers don't take cepacia patients doesn't mean it's never an option.

also, i just wanted to say i'm sorry. i can't even imagine how hard thi smust be for you right now - please feel free to vent or rant or whatever you need.

 

[NYCLawGirl]

i don't have cepacia, but hopefully this will help:

<a target=_blank class=ftalternatingbarlinklarge href="http://jamiebug.blogspot.com/
">http://jamiebug.blogspot.com/
</a>
that's the personal blog of a post-tx cepacia cfer. she has been doing really well. and just because some centers don't take cepacia patients doesn't mean it's never an option.

also, i just wanted to say i'm sorry. i can't even imagine how hard thi smust be for you right now - please feel free to vent or rant or whatever you need.

 

[NYCLawGirl]

i don't have cepacia, but hopefully this will help:

<a target=_blank class=ftalternatingbarlinklarge href="http://jamiebug.blogspot.com/
">http://jamiebug.blogspot.com/
</a>
that's the personal blog of a post-tx cepacia cfer. she has been doing really well. and just because some centers don't take cepacia patients doesn't mean it's never an option.

also, i just wanted to say i'm sorry. i can't even imagine how hard thi smust be for you right now - please feel free to vent or rant or whatever you need.

 

[NYCLawGirl]

i don't have cepacia, but hopefully this will help:

<a target=_blank class=ftalternatingbarlinklarge href="http://jamiebug.blogspot.com/
">http://jamiebug.blogspot.com/
</a>
that's the personal blog of a post-tx cepacia cfer. she has been doing really well. and just because some centers don't take cepacia patients doesn't mean it's never an option.

also, i just wanted to say i'm sorry. i can't even imagine how hard thi smust be for you right now - please feel free to vent or rant or whatever you need.

 

[NYCLawGirl]

i don't have cepacia, but hopefully this will help:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://jamiebug.blogspot.com/
">http://jamiebug.blogspot.com/
</a><br />
<br />that's the personal blog of a post-tx cepacia cfer. she has been doing really well. and just because some centers don't take cepacia patients doesn't mean it's never an option.
<br />
<br />also, i just wanted to say i'm sorry. i can't even imagine how hard thi smust be for you right now - please feel free to vent or rant or whatever you need.

 

[Diane]

When i was first diagnosed with cepacia over 12 years ago i was devastated. I too like you had a hard time mentally with it. As time went on i started to accept it a little better and decided to do what i can to stay as helthy as i could. Cepacia is scary because it is unpredictible. Do you know what genomovar (strain) you have? I have genomovar III, the most difficult one . Lately it has not been showing up in my sputum cultures but i am not overly excited because it could just be a fluke. It is rare that once it sets up shop in our lungs that it can be completely irradicated.... BUT i have read about it happening before so, nothings impossible.
My advice to you is: do what you can to stay healthy , try not to focus only on the cepacia
find out as much as you can about it, but keep things in perspective. Transplants are not out of the question for cepacia patients. Not all centers will do cepacia transplants, but some will. You can pm me if you want to talk further or for more info

 

[Diane]

When i was first diagnosed with cepacia over 12 years ago i was devastated. I too like you had a hard time mentally with it. As time went on i started to accept it a little better and decided to do what i can to stay as helthy as i could. Cepacia is scary because it is unpredictible. Do you know what genomovar (strain) you have? I have genomovar III, the most difficult one . Lately it has not been showing up in my sputum cultures but i am not overly excited because it could just be a fluke. It is rare that once it sets up shop in our lungs that it can be completely irradicated.... BUT i have read about it happening before so, nothings impossible.
My advice to you is: do what you can to stay healthy , try not to focus only on the cepacia
find out as much as you can about it, but keep things in perspective. Transplants are not out of the question for cepacia patients. Not all centers will do cepacia transplants, but some will. You can pm me if you want to talk further or for more info

 

[Diane]

When i was first diagnosed with cepacia over 12 years ago i was devastated. I too like you had a hard time mentally with it. As time went on i started to accept it a little better and decided to do what i can to stay as helthy as i could. Cepacia is scary because it is unpredictible. Do you know what genomovar (strain) you have? I have genomovar III, the most difficult one . Lately it has not been showing up in my sputum cultures but i am not overly excited because it could just be a fluke. It is rare that once it sets up shop in our lungs that it can be completely irradicated.... BUT i have read about it happening before so, nothings impossible.
My advice to you is: do what you can to stay healthy , try not to focus only on the cepacia
find out as much as you can about it, but keep things in perspective. Transplants are not out of the question for cepacia patients. Not all centers will do cepacia transplants, but some will. You can pm me if you want to talk further or for more info

 

[Diane]

When i was first diagnosed with cepacia over 12 years ago i was devastated. I too like you had a hard time mentally with it. As time went on i started to accept it a little better and decided to do what i can to stay as helthy as i could. Cepacia is scary because it is unpredictible. Do you know what genomovar (strain) you have? I have genomovar III, the most difficult one . Lately it has not been showing up in my sputum cultures but i am not overly excited because it could just be a fluke. It is rare that once it sets up shop in our lungs that it can be completely irradicated.... BUT i have read about it happening before so, nothings impossible.
My advice to you is: do what you can to stay healthy , try not to focus only on the cepacia
find out as much as you can about it, but keep things in perspective. Transplants are not out of the question for cepacia patients. Not all centers will do cepacia transplants, but some will. You can pm me if you want to talk further or for more info

 

[Diane]

When i was first diagnosed with cepacia over 12 years ago i was devastated. I too like you had a hard time mentally with it. As time went on i started to accept it a little better and decided to do what i can to stay as helthy as i could. Cepacia is scary because it is unpredictible. Do you know what genomovar (strain) you have? I have genomovar III, the most difficult one . Lately it has not been showing up in my sputum cultures but i am not overly excited because it could just be a fluke. It is rare that once it sets up shop in our lungs that it can be completely irradicated.... BUT i have read about it happening before so, nothings impossible.
<br /> My advice to you is: do what you can to stay healthy , try not to focus only on the cepacia
<br />find out as much as you can about it, but keep things in perspective. Transplants are not out of the question for cepacia patients. Not all centers will do cepacia transplants, but some will. You can pm me if you want to talk further or for more info

 

[lightNlife]

I've had cepacia for more than 10 years now; I remember what a worried look my doctors had on their faces, but despite their dire predictions, I have been functioning pretty well. My doctor likes to use multiple IVs at once to try to keep cepacia at bay. There's something about the combo of meds that makes the cepaciac calm down a bit.

I think the biggest bummer about cepacia is that it prevents us from being around other CFers from whom we could really draw support. Don't think of cepacia as a death sentence. Think of it as merely a complication of CF. Keep working hard at lung exercises, especially cardio, and you will be able to keep cepacia from sneaking up on you too often.

As to the transplant thing, there ARE centers that do cepacia transplants. Don't give up hope. Is transplantation is something you think you'll need, it's never too early to start talking with a transplant team and gathering information. Personally, I'm not willing to have a transplant because I know that it won't erradicate the cepacia in my sinuses. Nontheless, if you want to seek out a transplant team to discuss your options, I would say go for it!

All the best,
Lauren

 

[lightNlife]

I've had cepacia for more than 10 years now; I remember what a worried look my doctors had on their faces, but despite their dire predictions, I have been functioning pretty well. My doctor likes to use multiple IVs at once to try to keep cepacia at bay. There's something about the combo of meds that makes the cepaciac calm down a bit.

I think the biggest bummer about cepacia is that it prevents us from being around other CFers from whom we could really draw support. Don't think of cepacia as a death sentence. Think of it as merely a complication of CF. Keep working hard at lung exercises, especially cardio, and you will be able to keep cepacia from sneaking up on you too often.

As to the transplant thing, there ARE centers that do cepacia transplants. Don't give up hope. Is transplantation is something you think you'll need, it's never too early to start talking with a transplant team and gathering information. Personally, I'm not willing to have a transplant because I know that it won't erradicate the cepacia in my sinuses. Nontheless, if you want to seek out a transplant team to discuss your options, I would say go for it!

All the best,
Lauren

 

[lightNlife]

I've had cepacia for more than 10 years now; I remember what a worried look my doctors had on their faces, but despite their dire predictions, I have been functioning pretty well. My doctor likes to use multiple IVs at once to try to keep cepacia at bay. There's something about the combo of meds that makes the cepaciac calm down a bit.

I think the biggest bummer about cepacia is that it prevents us from being around other CFers from whom we could really draw support. Don't think of cepacia as a death sentence. Think of it as merely a complication of CF. Keep working hard at lung exercises, especially cardio, and you will be able to keep cepacia from sneaking up on you too often.

As to the transplant thing, there ARE centers that do cepacia transplants. Don't give up hope. Is transplantation is something you think you'll need, it's never too early to start talking with a transplant team and gathering information. Personally, I'm not willing to have a transplant because I know that it won't erradicate the cepacia in my sinuses. Nontheless, if you want to seek out a transplant team to discuss your options, I would say go for it!

All the best,
Lauren

 

[lightNlife]

I've had cepacia for more than 10 years now; I remember what a worried look my doctors had on their faces, but despite their dire predictions, I have been functioning pretty well. My doctor likes to use multiple IVs at once to try to keep cepacia at bay. There's something about the combo of meds that makes the cepaciac calm down a bit.

I think the biggest bummer about cepacia is that it prevents us from being around other CFers from whom we could really draw support. Don't think of cepacia as a death sentence. Think of it as merely a complication of CF. Keep working hard at lung exercises, especially cardio, and you will be able to keep cepacia from sneaking up on you too often.

As to the transplant thing, there ARE centers that do cepacia transplants. Don't give up hope. Is transplantation is something you think you'll need, it's never too early to start talking with a transplant team and gathering information. Personally, I'm not willing to have a transplant because I know that it won't erradicate the cepacia in my sinuses. Nontheless, if you want to seek out a transplant team to discuss your options, I would say go for it!

All the best,
Lauren

 

[lightNlife]

I've had cepacia for more than 10 years now; I remember what a worried look my doctors had on their faces, but despite their dire predictions, I have been functioning pretty well. My doctor likes to use multiple IVs at once to try to keep cepacia at bay. There's something about the combo of meds that makes the cepaciac calm down a bit.
<br />
<br />I think the biggest bummer about cepacia is that it prevents us from being around other CFers from whom we could really draw support. Don't think of cepacia as a death sentence. Think of it as merely a complication of CF. Keep working hard at lung exercises, especially cardio, and you will be able to keep cepacia from sneaking up on you too often.
<br />
<br />As to the transplant thing, there ARE centers that do cepacia transplants. Don't give up hope. Is transplantation is something you think you'll need, it's never too early to start talking with a transplant team and gathering information. Personally, I'm not willing to have a transplant because I know that it won't erradicate the cepacia in my sinuses. Nontheless, if you want to seek out a transplant team to discuss your options, I would say go for it!
<br />
<br />All the best,
<br />Lauren