Cepacia

[fourkidsmom]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.