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lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

lightNlife
06-13-2007, 04:22 AM
I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

ladybug
06-13-2007, 04:40 AM
Good for you... You have an amazing attitude (which I also believe is half this battle)... I know there are a few others on this board who do live with cepacia, and it always gives me hope that it CAN be done. I appreciate you sharing your story/experience. <img src="i/expressions/face-icon-small-smile.gif" border="0">

JazzysMom
06-13-2007, 08:45 AM
AMEN!

JazzysMom
06-13-2007, 08:45 AM
AMEN!

JazzysMom
06-13-2007, 08:45 AM
AMEN!

JazzysMom
06-13-2007, 08:45 AM
AMEN!

JazzysMom
06-13-2007, 08:45 AM
AMEN!

JazzysMom
06-13-2007, 08:45 AM
AMEN!

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

Jem
06-13-2007, 08:47 AM
Thank you for sharing your experiences with this monster. Nobody wants to hear that they have cultured cepacia but your experience gives me and I am sure many others hope. Keeping you in prayer.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

moxie1
06-13-2007, 09:28 AM
Hi all!

I too cultured cepacia over 10 years ago. I vividly remember the night the docs called to tell us. I was very scared, but as I went to bed that night, God gave me His peace. I have never felt anything like that before. Anyway, I am doing very well with it--kind of like it has a symbiotic relationship with my body. At times I still get worried--especially when I read about others going downhill with it--but I remember that peace, trust in the Lord, and live another day.

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

HairGirl
06-13-2007, 12:40 PM
I've had cepacia over 20 years, the worst one (#3) and yes have been able to keep it at bay until recently, don't ever give it a chance to flare up because it won't quiet down very fast!!!!! I really hope I can get the cepacia to calm down, if not sadly it will win the battle I'm fighting with. So keep up the good work!!!!

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

princessjdc
06-13-2007, 12:54 PM
Im glad to hear that some of you are able to keep the cepacia at bay and it not get flared up. I have read about cepacia on the site many many times and I always remember thinking that I never want to get this and that was it, but then when I read about Frankie passing and then someone mentioning she had Cepacia for some reason it scared me and then i got worried and I had to tell myself that if I ever do get cepacia Ill deal with it the best I can like some of you guys have, I guess the only scary part about it is is that this bug from what Ive read takes more lives than what psuedomonas or any other bug that I know of and thats just a scary thought right there.

Do you know how you guys had contracted B. Cepacia? I do remember reading that some have gotten it from the hospital, but any where else like on vacation or at home or with products etc etc....

I will pray and hope for the best of all of you that have Cepacia and that you kick its A** . Thank you for sharing your story LightNLife along with some of you others too.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

moxie1
06-13-2007, 02:11 PM
I had never heard of cepacia before I got it. Then I found out my cousin (also had cf) had it and that's who I probably got it from. My aunt knew about it and never warned us or tried to keep us apart. Once I found out I had it, we learned that he had it. Then, I tried to keep my distance, but it was too late. I have felt some resentment in the past, but I have forgiven her.

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

Diane
06-13-2007, 03:05 PM
I have also had cepacia for about 10 years now. Its isnt an easy thing to deal with sometimes, and Hairgirl is right, you have to do everything you can to keep it at bay and not let it get its foot in the door, because you will have a heck of a time getting its foot back out. I got mine while i was in the hospital ( first time in ) for a sinus surgery. I was fine and doing very well, but once i woke up from that surgery, it all changed. I never knew there was such a thing as cepacia or any of the other bugs that are out there. I was totally uninformed about a lot concerning cf since i never had any problems with it. Cepacia changed all that.
Thanks LightNLife for posting this and ifeel the same as you in this quote from your post............................................
<b>
<i>My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret. </i></b>

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

beleache
06-13-2007, 09:34 PM
Thank you all for your courage, it gives me hope , i am proud to say that i talk to some of the most brave and inspiring ppl around ... God Bless you all <img src="i/expressions/heart.gif" border="0"> Joni 55 y/o f w c/f

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

LouLou
06-13-2007, 10:41 PM
Great post Lauren. All of you with cepacia and living life give me so much encouragement for a wonderful life even with cf...hopefully sans cepacia.

My husband is in big pharmaceutical development. He went to a lecture the other day by a big wig chemist who's main molecule he was discussing fights b. cepacia. Dh has was so excited to come home and tell me about it and that the guy actually mentioned it being vicous for those with cystic fibrosis.

Keep up the good fight. I'm rooting for you all. I'll post more on it if I hear more and when it becomes public.

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

NoExcuses
06-13-2007, 11:29 PM
High 5 sista!

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

JustDucky
06-14-2007, 10:12 PM
I am not sure where I got my cepacia, probably in a hospital setting. I have had it for over 2 years now. It can be a real pain and very hard to bounce back from but the key is to catch it in time, when you start to feel run down and get the treatment started quickly. Being compliant is also important along with a fighting attitude. It can be disheartening when you just know that a hospitalization is on the horizon, but on the flipside, it also means that once the therapy is over, you will feel better. My last stint in the hospital was for two months, I had complications. It was supposed to be 3 weeks of IV's but that wasn't in the cards.I When I finally did go home, I was weak but felt alot better. I got through all of that with the help of my family, friends and my cyberfriends. I give everyone of you kudos for the fight you put up every day, cepacia or no cepacia. Hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

fourkidsmom
06-14-2007, 11:01 PM
You know cepecia scares the sh*t out of me. My now 6 yr old son cultured the worst (#3) when he was ONLY 4. I often wonder if that means he won't be around to see alot of things, I try not to think about it. But when he does get sick we have a very agressive Cf team and we know he will be going in. I too don't know where he got it, probably the hospital, like the pseudo. My little guy always takes the hardest way for everything though. He never gets a freakin break that is what makes him who he is today. You just need to do the best you can and live one day at a time, none of us know how long we really have here. You guys all keep up the fight and give me the inspiration I need to keep fighting this freaking CF with my son! I hate CF........

Fourkidsmom

catalinaohara
07-23-2007, 10:51 PM
i've had it for about 8 years now I'd say. the thing is, I dont know when exactly I caught it! talk about frustrating. One day I was admitted for a cleanout and all of a sudden everyone was wearing precautions and I laughed and asked why (this was before people universally used precautions...gross, and why we all caught it in the first place), and they said "oh, just because of the cepacia." At that point I was like "i dont have cepacia" and it was really awkward and no one had told me they thought I knew.

luckily it didnt really hit me then, physically or mentally. I didn't really even feel the effects of it until 4 years later, when I started to get sick in ways I never have before.

I hope it doesn't seem like a death notice for people. I think I was lucky that it was never this big DOOM message coming down on me with doctors 'sitting me down' and telling me. Plenty of people are sick with it, and without it, and plenty are well. Granted, its not fun, I wish I didn't have it, but there is a teeny tiny part of me that feels relieved (teeny tiny) because at least I don't have to live in fear of catching it (which I definitely would!)

-c

catalinaohara
07-23-2007, 10:51 PM
i've had it for about 8 years now I'd say. the thing is, I dont know when exactly I caught it! talk about frustrating. One day I was admitted for a cleanout and all of a sudden everyone was wearing precautions and I laughed and asked why (this was before people universally used precautions...gross, and why we all caught it in the first place), and they said "oh, just because of the cepacia." At that point I was like "i dont have cepacia" and it was really awkward and no one had told me they thought I knew.

luckily it didnt really hit me then, physically or mentally. I didn't really even feel the effects of it until 4 years later, when I started to get sick in ways I never have before.

I hope it doesn't seem like a death notice for people. I think I was lucky that it was never this big DOOM message coming down on me with doctors 'sitting me down' and telling me. Plenty of people are sick with it, and without it, and plenty are well. Granted, its not fun, I wish I didn't have it, but there is a teeny tiny part of me that feels relieved (teeny tiny) because at least I don't have to live in fear of catching it (which I definitely would!)

-c

catalinaohara
07-23-2007, 10:51 PM
i've had it for about 8 years now I'd say. the thing is, I dont know when exactly I caught it! talk about frustrating. One day I was admitted for a cleanout and all of a sudden everyone was wearing precautions and I laughed and asked why (this was before people universally used precautions...gross, and why we all caught it in the first place), and they said "oh, just because of the cepacia." At that point I was like "i dont have cepacia" and it was really awkward and no one had told me they thought I knew.

luckily it didnt really hit me then, physically or mentally. I didn't really even feel the effects of it until 4 years later, when I started to get sick in ways I never have before.

I hope it doesn't seem like a death notice for people. I think I was lucky that it was never this big DOOM message coming down on me with doctors 'sitting me down' and telling me. Plenty of people are sick with it, and without it, and plenty are well. Granted, its not fun, I wish I didn't have it, but there is a teeny tiny part of me that feels relieved (teeny tiny) because at least I don't have to live in fear of catching it (which I definitely would!)

-c

catalinaohara
07-23-2007, 10:51 PM
i've had it for about 8 years now I'd say. the thing is, I dont know when exactly I caught it! talk about frustrating. One day I was admitted for a cleanout and all of a sudden everyone was wearing precautions and I laughed and asked why (this was before people universally used precautions...gross, and why we all caught it in the first place), and they said "oh, just because of the cepacia." At that point I was like "i dont have cepacia" and it was really awkward and no one had told me they thought I knew.

luckily it didnt really hit me then, physically or mentally. I didn't really even feel the effects of it until 4 years later, when I started to get sick in ways I never have before.

I hope it doesn't seem like a death notice for people. I think I was lucky that it was never this big DOOM message coming down on me with doctors 'sitting me down' and telling me. Plenty of people are sick with it, and without it, and plenty are well. Granted, its not fun, I wish I didn't have it, but there is a teeny tiny part of me that feels relieved (teeny tiny) because at least I don't have to live in fear of catching it (which I definitely would!)

-c

catalinaohara
07-23-2007, 10:51 PM
i've had it for about 8 years now I'd say. the thing is, I dont know when exactly I caught it! talk about frustrating. One day I was admitted for a cleanout and all of a sudden everyone was wearing precautions and I laughed and asked why (this was before people universally used precautions...gross, and why we all caught it in the first place), and they said "oh, just because of the cepacia." At that point I was like "i dont have cepacia" and it was really awkward and no one had told me they thought I knew.

luckily it didnt really hit me then, physically or mentally. I didn't really even feel the effects of it until 4 years later, when I started to get sick in ways I never have before.

I hope it doesn't seem like a death notice for people. I think I was lucky that it was never this big DOOM message coming down on me with doctors 'sitting me down' and telling me. Plenty of people are sick with it, and without it, and plenty are well. Granted, its not fun, I wish I didn't have it, but there is a teeny tiny part of me that feels relieved (teeny tiny) because at least I don't have to live in fear of catching it (which I definitely would!)

-c

Athena
07-23-2007, 11:35 PM
LightNlife,

Thank you for this post. I do not have cepacia and have always feared the word yet alone what it meant or could mean. I admire you for what u said because I have been my own worst enemy with my CF, however I have decided to take control and part of that meant going back to the DR and takeing my meds which ok I will not lie is harder for me because it means that I have to face my CF. Thank God for this site because it lets me know that I'm not alone. and u just gave me hope which I really needed today. Thank you

Athena

P.S. sorry I posted this right away without reading the rest of the post so let me thank all you fighters of Cepacia for sharing your story and spreading the hope of life around this forum. Once again thank you LightNlife for this post it hit home.<img src="i/expressions/heart.gif" border="0">

Athena
07-23-2007, 11:35 PM
LightNlife,

Thank you for this post. I do not have cepacia and have always feared the word yet alone what it meant or could mean. I admire you for what u said because I have been my own worst enemy with my CF, however I have decided to take control and part of that meant going back to the DR and takeing my meds which ok I will not lie is harder for me because it means that I have to face my CF. Thank God for this site because it lets me know that I'm not alone. and u just gave me hope which I really needed today. Thank you

Athena

P.S. sorry I posted this right away without reading the rest of the post so let me thank all you fighters of Cepacia for sharing your story and spreading the hope of life around this forum. Once again thank you LightNlife for this post it hit home.<img src="i/expressions/heart.gif" border="0">

Athena
07-23-2007, 11:35 PM
LightNlife,

Thank you for this post. I do not have cepacia and have always feared the word yet alone what it meant or could mean. I admire you for what u said because I have been my own worst enemy with my CF, however I have decided to take control and part of that meant going back to the DR and takeing my meds which ok I will not lie is harder for me because it means that I have to face my CF. Thank God for this site because it lets me know that I'm not alone. and u just gave me hope which I really needed today. Thank you

Athena

P.S. sorry I posted this right away without reading the rest of the post so let me thank all you fighters of Cepacia for sharing your story and spreading the hope of life around this forum. Once again thank you LightNlife for this post it hit home.<img src="i/expressions/heart.gif" border="0">

Athena
07-23-2007, 11:35 PM
LightNlife,

Thank you for this post. I do not have cepacia and have always feared the word yet alone what it meant or could mean. I admire you for what u said because I have been my own worst enemy with my CF, however I have decided to take control and part of that meant going back to the DR and takeing my meds which ok I will not lie is harder for me because it means that I have to face my CF. Thank God for this site because it lets me know that I'm not alone. and u just gave me hope which I really needed today. Thank you

Athena

P.S. sorry I posted this right away without reading the rest of the post so let me thank all you fighters of Cepacia for sharing your story and spreading the hope of life around this forum. Once again thank you LightNlife for this post it hit home.<img src="i/expressions/heart.gif" border="0">

Athena
07-23-2007, 11:35 PM
LightNlife,

Thank you for this post. I do not have cepacia and have always feared the word yet alone what it meant or could mean. I admire you for what u said because I have been my own worst enemy with my CF, however I have decided to take control and part of that meant going back to the DR and takeing my meds which ok I will not lie is harder for me because it means that I have to face my CF. Thank God for this site because it lets me know that I'm not alone. and u just gave me hope which I really needed today. Thank you

Athena

P.S. sorry I posted this right away without reading the rest of the post so let me thank all you fighters of Cepacia for sharing your story and spreading the hope of life around this forum. Once again thank you LightNlife for this post it hit home.<img src="i/expressions/heart.gif" border="0">

tammykrumrey
07-24-2007, 11:02 AM
Thank you for all of you sharing your stories of strength regarding your Cepacia. As I have said before, my nephew has Cepacia. We found out he had it while undergoing a series of sputum cultures that needed to be clear prior to leaving for a CF camp in Texas, almost exactly 6 years ago this week. It was the third (and last) sputum test required by the camp that found it. I had not seen my little sister cry about his CF since his birth, until the day that those results were called in to her. Dalton had just turned 10 years old.

He really has had a very hard time since then, and his isn't even the worst type. It just has been such a challenge for him to stay healthy. We do not know where he caught the cepacia. There were only three known cases of it in the St. Louis area at the time, and they none of them were the same strain. We feel it came from the environment, but who knows.

Your post just give me more hope for his future.

tammykrumrey
07-24-2007, 11:02 AM
Thank you for all of you sharing your stories of strength regarding your Cepacia. As I have said before, my nephew has Cepacia. We found out he had it while undergoing a series of sputum cultures that needed to be clear prior to leaving for a CF camp in Texas, almost exactly 6 years ago this week. It was the third (and last) sputum test required by the camp that found it. I had not seen my little sister cry about his CF since his birth, until the day that those results were called in to her. Dalton had just turned 10 years old.

He really has had a very hard time since then, and his isn't even the worst type. It just has been such a challenge for him to stay healthy. We do not know where he caught the cepacia. There were only three known cases of it in the St. Louis area at the time, and they none of them were the same strain. We feel it came from the environment, but who knows.

Your post just give me more hope for his future.

tammykrumrey
07-24-2007, 11:02 AM
Thank you for all of you sharing your stories of strength regarding your Cepacia. As I have said before, my nephew has Cepacia. We found out he had it while undergoing a series of sputum cultures that needed to be clear prior to leaving for a CF camp in Texas, almost exactly 6 years ago this week. It was the third (and last) sputum test required by the camp that found it. I had not seen my little sister cry about his CF since his birth, until the day that those results were called in to her. Dalton had just turned 10 years old.

He really has had a very hard time since then, and his isn't even the worst type. It just has been such a challenge for him to stay healthy. We do not know where he caught the cepacia. There were only three known cases of it in the St. Louis area at the time, and they none of them were the same strain. We feel it came from the environment, but who knows.

Your post just give me more hope for his future.

tammykrumrey
07-24-2007, 11:02 AM
Thank you for all of you sharing your stories of strength regarding your Cepacia. As I have said before, my nephew has Cepacia. We found out he had it while undergoing a series of sputum cultures that needed to be clear prior to leaving for a CF camp in Texas, almost exactly 6 years ago this week. It was the third (and last) sputum test required by the camp that found it. I had not seen my little sister cry about his CF since his birth, until the day that those results were called in to her. Dalton had just turned 10 years old.

He really has had a very hard time since then, and his isn't even the worst type. It just has been such a challenge for him to stay healthy. We do not know where he caught the cepacia. There were only three known cases of it in the St. Louis area at the time, and they none of them were the same strain. We feel it came from the environment, but who knows.

Your post just give me more hope for his future.

tammykrumrey
07-24-2007, 11:02 AM
Thank you for all of you sharing your stories of strength regarding your Cepacia. As I have said before, my nephew has Cepacia. We found out he had it while undergoing a series of sputum cultures that needed to be clear prior to leaving for a CF camp in Texas, almost exactly 6 years ago this week. It was the third (and last) sputum test required by the camp that found it. I had not seen my little sister cry about his CF since his birth, until the day that those results were called in to her. Dalton had just turned 10 years old.

He really has had a very hard time since then, and his isn't even the worst type. It just has been such a challenge for him to stay healthy. We do not know where he caught the cepacia. There were only three known cases of it in the St. Louis area at the time, and they none of them were the same strain. We feel it came from the environment, but who knows.

Your post just give me more hope for his future.