Coping with Cepacia

laulau555 · Apr 15, 2009

I've had cepacia for about 5 years. When my hospital told me that there was an outbreak of a "Deadly" bacteria in its cf patients, I figured it wouldn't happen to me, and when my culture showed it I was almost too young to understand what it meant (I was 13) at least enough to worry about it. However, I am healthier than I have ever been with it. I can still do everything I used to, with the exception of needing a stronger hit of antibiotics when sick, and an increased amount of exacerbations. And the reason is that I am aggresive with airway clearance, etc.

I find that I can no longer skip treatments (not that I should have anyhow) but the cepacia seems to be undercontrol when I am taking care of myself regularly. Exercising is the best way to keep it out of your system, to mobilize whatever mucus you can.

Cepacia is no longer a death sentence as long as you do whatever possible to keep it under control. It is simply a complication, like Lauren said.

I rejoiced over the findings of a new drug which may potentially kill cepacia. <a target=_blank class=ftalternatingbarlinklarge href="http://www.rtmagazine.com/news/2009-01-30_01.asp
">http://www.rtmagazine.com/news/2009-01-30_01.asp
</a>
As for the transplant question, if it ever does come to that there are people who have survived transplants with cepacia. I find it easier to live in the present and do your best to stay healthy now.

laulau555 · Apr 15, 2009

I've had cepacia for about 5 years. When my hospital told me that there was an outbreak of a "Deadly" bacteria in its cf patients, I figured it wouldn't happen to me, and when my culture showed it I was almost too young to understand what it meant (I was 13) at least enough to worry about it. However, I am healthier than I have ever been with it. I can still do everything I used to, with the exception of needing a stronger hit of antibiotics when sick, and an increased amount of exacerbations. And the reason is that I am aggresive with airway clearance, etc.

I find that I can no longer skip treatments (not that I should have anyhow) but the cepacia seems to be undercontrol when I am taking care of myself regularly. Exercising is the best way to keep it out of your system, to mobilize whatever mucus you can.

Cepacia is no longer a death sentence as long as you do whatever possible to keep it under control. It is simply a complication, like Lauren said.

I rejoiced over the findings of a new drug which may potentially kill cepacia. <a target=_blank class=ftalternatingbarlinklarge href="http://www.rtmagazine.com/news/2009-01-30_01.asp
">http://www.rtmagazine.com/news/2009-01-30_01.asp
</a>
As for the transplant question, if it ever does come to that there are people who have survived transplants with cepacia. I find it easier to live in the present and do your best to stay healthy now.

laulau555 · Apr 15, 2009

I've had cepacia for about 5 years. When my hospital told me that there was an outbreak of a "Deadly" bacteria in its cf patients, I figured it wouldn't happen to me, and when my culture showed it I was almost too young to understand what it meant (I was 13) at least enough to worry about it. However, I am healthier than I have ever been with it. I can still do everything I used to, with the exception of needing a stronger hit of antibiotics when sick, and an increased amount of exacerbations. And the reason is that I am aggresive with airway clearance, etc.

I find that I can no longer skip treatments (not that I should have anyhow) but the cepacia seems to be undercontrol when I am taking care of myself regularly. Exercising is the best way to keep it out of your system, to mobilize whatever mucus you can.

Cepacia is no longer a death sentence as long as you do whatever possible to keep it under control. It is simply a complication, like Lauren said.

I rejoiced over the findings of a new drug which may potentially kill cepacia. <a target=_blank class=ftalternatingbarlinklarge href="http://www.rtmagazine.com/news/2009-01-30_01.asp
">http://www.rtmagazine.com/news/2009-01-30_01.asp
</a>
As for the transplant question, if it ever does come to that there are people who have survived transplants with cepacia. I find it easier to live in the present and do your best to stay healthy now.

laulau555 · Apr 15, 2009

I've had cepacia for about 5 years. When my hospital told me that there was an outbreak of a "Deadly" bacteria in its cf patients, I figured it wouldn't happen to me, and when my culture showed it I was almost too young to understand what it meant (I was 13) at least enough to worry about it. However, I am healthier than I have ever been with it. I can still do everything I used to, with the exception of needing a stronger hit of antibiotics when sick, and an increased amount of exacerbations. And the reason is that I am aggresive with airway clearance, etc.

I find that I can no longer skip treatments (not that I should have anyhow) but the cepacia seems to be undercontrol when I am taking care of myself regularly. Exercising is the best way to keep it out of your system, to mobilize whatever mucus you can.

Cepacia is no longer a death sentence as long as you do whatever possible to keep it under control. It is simply a complication, like Lauren said.

I rejoiced over the findings of a new drug which may potentially kill cepacia. <a target=_blank class=ftalternatingbarlinklarge href="http://www.rtmagazine.com/news/2009-01-30_01.asp
">http://www.rtmagazine.com/news/2009-01-30_01.asp
</a>
As for the transplant question, if it ever does come to that there are people who have survived transplants with cepacia. I find it easier to live in the present and do your best to stay healthy now.

laulau555 · Apr 15, 2009

I've had cepacia for about 5 years. When my hospital told me that there was an outbreak of a "Deadly" bacteria in its cf patients, I figured it wouldn't happen to me, and when my culture showed it I was almost too young to understand what it meant (I was 13) at least enough to worry about it. However, I am healthier than I have ever been with it. I can still do everything I used to, with the exception of needing a stronger hit of antibiotics when sick, and an increased amount of exacerbations. And the reason is that I am aggresive with airway clearance, etc.
 
 I find that I can no longer skip treatments (not that I should have anyhow) but the cepacia seems to be undercontrol when I am taking care of myself regularly. Exercising is the best way to keep it out of your system, to mobilize whatever mucus you can.
 
 Cepacia is no longer a death sentence as long as you do whatever possible to keep it under control. It is simply a complication, like Lauren said.
 
 I rejoiced over the findings of a new drug which may potentially kill cepacia. <a target=_blank class=ftalternatingbarlinklarge href="http://www.rtmagazine.com/news/2009-01-30_01.asp
">http://www.rtmagazine.com/news/2009-01-30_01.asp
</a> 
 As for the transplant question, if it ever does come to that there are people who have survived transplants with cepacia. I find it easier to live in the present and do your best to stay healthy now.

mander31880 · Apr 15, 2009

Thanks to everyone for all your help. Luckily, I am exercising like crazy, 5-6 times a week. I was so excited, the other day when I ran 3 miles. I got a cold last week though and have only been able to run 1 mile. I'm in the hospital currently so I will kick some butt and get back to where I need to be. They called the specific strain I have Ceno-cepacia. They said it's more aggressive.

mander31880 · Apr 15, 2009

Thanks to everyone for all your help. Luckily, I am exercising like crazy, 5-6 times a week. I was so excited, the other day when I ran 3 miles. I got a cold last week though and have only been able to run 1 mile. I'm in the hospital currently so I will kick some butt and get back to where I need to be. They called the specific strain I have Ceno-cepacia. They said it's more aggressive.

mander31880 · Apr 15, 2009

Thanks to everyone for all your help. Luckily, I am exercising like crazy, 5-6 times a week. I was so excited, the other day when I ran 3 miles. I got a cold last week though and have only been able to run 1 mile. I'm in the hospital currently so I will kick some butt and get back to where I need to be. They called the specific strain I have Ceno-cepacia. They said it's more aggressive.

mander31880 · Apr 15, 2009

Thanks to everyone for all your help. Luckily, I am exercising like crazy, 5-6 times a week. I was so excited, the other day when I ran 3 miles. I got a cold last week though and have only been able to run 1 mile. I'm in the hospital currently so I will kick some butt and get back to where I need to be. They called the specific strain I have Ceno-cepacia. They said it's more aggressive.

mander31880 · Apr 15, 2009

Thanks to everyone for all your help. Luckily, I am exercising like crazy, 5-6 times a week. I was so excited, the other day when I ran 3 miles. I got a cold last week though and have only been able to run 1 mile. I'm in the hospital currently so I will kick some butt and get back to where I need to be. They called the specific strain I have Ceno-cepacia. They said it's more aggressive.

toria · Apr 16, 2009