JUST GOT HOME FROM THE HOSPITAL

[anonymous]

To Seana and Courteny,

I just wanted to say I feel for you too. It's kinda like now there's a new world you have to discover. It can be overwhelming. I would say to you, try to be an active member of this support community. It helps in dealing with the issues and clearing your head. I would also add to that-don't listen to everything you hear, good or bad. Sometimes, it's neccesary to check with a doctor. And, the lung problem does not mean that she's falling. Don't believe that.

You'll be in our thoughts.

Christian, 23-CF, Cepacia

 

[anonymous]

To Seana and Courteny,

I just wanted to say I feel for you too. It's kinda like now there's a new world you have to discover. It can be overwhelming. I would say to you, try to be an active member of this support community. It helps in dealing with the issues and clearing your head. I would also add to that-don't listen to everything you hear, good or bad. Sometimes, it's neccesary to check with a doctor. And, the lung problem does not mean that she's falling. Don't believe that.

You'll be in our thoughts.

Christian, 23-CF, Cepacia

 

[anonymous]

It's kinda like when DS cultured PA. Up until that point, I really didn't think he had CF. I just figured we'd keep doing BDs, giving him meds and someday, the doctors would figure out that he really didn't have it. It would all just be a big mistake and in the meantime he'd be getting excellent lung care. PA and Tobi were things they told us that we wouldn't have to deal with for years and years and years and a month or so later, DS cultured it. Was a big punch in the gut. Liza

 

[anonymous]

It's kinda like when DS cultured PA. Up until that point, I really didn't think he had CF. I just figured we'd keep doing BDs, giving him meds and someday, the doctors would figure out that he really didn't have it. It would all just be a big mistake and in the meantime he'd be getting excellent lung care. PA and Tobi were things they told us that we wouldn't have to deal with for years and years and years and a month or so later, DS cultured it. Was a big punch in the gut. Liza

 

[anonymous]

Ok, here's something to admit,

Sometimes I still fantasize about not having it. I don't mean I wish it, I mean, I actually sit and wonder if they're wrong. And if I just have some symptoms, like really bad asthma.
I guess it's a form of denial. And I've always been the type to think, well maybe they can't do this or that, or maybe some others passed from this-but there's no way that'll happen to me. I don't have it that bad.

Christian

 

[anonymous]

Ok, here's something to admit,

Sometimes I still fantasize about not having it. I don't mean I wish it, I mean, I actually sit and wonder if they're wrong. And if I just have some symptoms, like really bad asthma.
I guess it's a form of denial. And I've always been the type to think, well maybe they can't do this or that, or maybe some others passed from this-but there's no way that'll happen to me. I don't have it that bad.

Christian

 

[JustDucky]

Seanna and Courteny, my heart goes out to you...it really sounds like you had a trying day. I know there is so much to absorb as far as CF goes, treatments for the lungs, enzymes, vitamins...it really is alot to deal with. As Sean said, we all have bacteria in our respiratory tract, sometimes when someone is cultured, the results might read "normal flora", which essentially means that it is their normal bacteria. Bacilli, cocci as well as the other cells you mention could easily be just that. Common examples of bacilli are pseudomonas, E. coli, B. cepacia.. The most common example of cocci are staph. Hopefully once you get a final report, you will have better answers regarding that culture.
Hopefully Courteny's PFT's went well...docs like to look at the FEV1 (forced expiratory volume over 1 second) and the FVC (forced vital capacity). Those pieces of information tell the doc how much the airways are affected by the CF and is noted as a percentage. For example, my FEV1 was less than 20% prior to my vent, in otherwords, that number reflected that I fell in the 20% predicted range for my height, age and gender.
If she isn't doing Chest PT, it would be a good idea, bring it up to your doc about this, I found that the more crap we can get out of our lungs the better...our lungs become petri dishes because our mucous is so thick. I take Pulmozyme as well which is like draino to the lungs, really cleans me out. BTW, I was just diagnosed when I was 33, I am now 34.
I am thinking of both of you, hugs Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JustDucky]

Seanna and Courteny, my heart goes out to you...it really sounds like you had a trying day. I know there is so much to absorb as far as CF goes, treatments for the lungs, enzymes, vitamins...it really is alot to deal with. As Sean said, we all have bacteria in our respiratory tract, sometimes when someone is cultured, the results might read "normal flora", which essentially means that it is their normal bacteria. Bacilli, cocci as well as the other cells you mention could easily be just that. Common examples of bacilli are pseudomonas, E. coli, B. cepacia.. The most common example of cocci are staph. Hopefully once you get a final report, you will have better answers regarding that culture.
Hopefully Courteny's PFT's went well...docs like to look at the FEV1 (forced expiratory volume over 1 second) and the FVC (forced vital capacity). Those pieces of information tell the doc how much the airways are affected by the CF and is noted as a percentage. For example, my FEV1 was less than 20% prior to my vent, in otherwords, that number reflected that I fell in the 20% predicted range for my height, age and gender.
If she isn't doing Chest PT, it would be a good idea, bring it up to your doc about this, I found that the more crap we can get out of our lungs the better...our lungs become petri dishes because our mucous is so thick. I take Pulmozyme as well which is like draino to the lungs, really cleans me out. BTW, I was just diagnosed when I was 33, I am now 34.
I am thinking of both of you, hugs Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Seana30]

THANK YOU ALL FOR THE KIND WORDS!  I think it is funny how our minds work.  Our minds make us find ways to deal with things.  Like I said, I think I just convinced myself that she was going to be this "special case" and that is how I dealt with it, but that's okay........I still think we are VERY lucky when it comes to Courtney.  She is a smart, beautiful girl who can do anything that she sets her mind to!!We both are feeling much better today.  Her fever is gone, and I think she will be heading back to school tomorrow.  The docs think she just picked up something from school.  I am going to talk to her teachers again because while we were in the hospital Courtney told me that there is a boy that keeps coughing all over her in class!!!We are suppose to start seeing the pulmonoligist that saw us in the hospital, and I am going to ask him what we should be doing now.  Her PFTs were great, so should we be doing CPT??  Do you all do this just for preventative measures???Again, thank you all.  It helps to know that there are people that understand!!!Seanamom to Lauren- 15 no CFCourtney- 13 with CFCameron- 10 no CF

 

[Seana30]

THANK YOU ALL FOR THE KIND WORDS!  I think it is funny how our minds work.  Our minds make us find ways to deal with things.  Like I said, I think I just convinced myself that she was going to be this "special case" and that is how I dealt with it, but that's okay........I still think we are VERY lucky when it comes to Courtney.  She is a smart, beautiful girl who can do anything that she sets her mind to!!We both are feeling much better today.  Her fever is gone, and I think she will be heading back to school tomorrow.  The docs think she just picked up something from school.  I am going to talk to her teachers again because while we were in the hospital Courtney told me that there is a boy that keeps coughing all over her in class!!!We are suppose to start seeing the pulmonoligist that saw us in the hospital, and I am going to ask him what we should be doing now.  Her PFTs were great, so should we be doing CPT??  Do you all do this just for preventative measures???Again, thank you all.  It helps to know that there are people that understand!!!Seanamom to Lauren- 15 no CFCourtney- 13 with CFCameron- 10 no CF

 

[anonymous]

We've done CPT since DS was a couple of weeks old. When he developed bronchiitis at 3 months, we were told by his doctor to "beat that cough out of him". Our doctor at the CF clinic stressed proper lung care -- CPT 3-4 times a day -- bare minimum of twice a day. Keep stuff moving up and out of him so it doesn't stagnate and cause an infection or scarring was what he basically said; however, our local CF clinic has a different view and was surprised we were doing CPT because "ds's lungs weren't affected yet". Some clinics stress nutrition as the most important factor of CF care, our doctor told us lung care was key. While nutrition is still important, he indicated you can regain weight, you can regain lung tissue once it's damaged.

Being that she does have a cough, might be a good idea to ask about CPT or the vest to get that stuff moving. I would think she'd feel oh so much better getting that stuff out. Liza

 

[anonymous]

We've done CPT since DS was a couple of weeks old. When he developed bronchiitis at 3 months, we were told by his doctor to "beat that cough out of him". Our doctor at the CF clinic stressed proper lung care -- CPT 3-4 times a day -- bare minimum of twice a day. Keep stuff moving up and out of him so it doesn't stagnate and cause an infection or scarring was what he basically said; however, our local CF clinic has a different view and was surprised we were doing CPT because "ds's lungs weren't affected yet". Some clinics stress nutrition as the most important factor of CF care, our doctor told us lung care was key. While nutrition is still important, he indicated you can regain weight, you can regain lung tissue once it's damaged.

Being that she does have a cough, might be a good idea to ask about CPT or the vest to get that stuff moving. I would think she'd feel oh so much better getting that stuff out. Liza

 

[anonymous]

Whoops, CAN'T regain lung tissue once it's lost. In any event. Different clinics, different ways of doing things. Sounds like you're doing the best you can.

BTW, have courtney do what I do at work when someone stops my desk and coughs -- I threaten to hose them down with lysol (I do spray the area when the leave -- while holding my breath), next time they do it -- I bring out the can. I've also posted wash your hands, cover your cough -- flu posters and brochures from the health department from their fight the flu campaign 'cuz I have a heck of a time with coworkers showing up to work with all kinds of bugs -- flu, strep....And I don't want to bring any of that home to ds. Liza

 

[anonymous]

Whoops, CAN'T regain lung tissue once it's lost. In any event. Different clinics, different ways of doing things. Sounds like you're doing the best you can.

BTW, have courtney do what I do at work when someone stops my desk and coughs -- I threaten to hose them down with lysol (I do spray the area when the leave -- while holding my breath), next time they do it -- I bring out the can. I've also posted wash your hands, cover your cough -- flu posters and brochures from the health department from their fight the flu campaign 'cuz I have a heck of a time with coworkers showing up to work with all kinds of bugs -- flu, strep....And I don't want to bring any of that home to ds. Liza

 

[Scarlett81]

I would probably start doing chest PT if it was my kid. It's a major pain in the you know what, but even if it helps a little? And is Courteney active? That's great for keeping the mucous moving and getting it out. Maybe you could find a sport or hobby that would interest her. I do horseback riding. Great for lungs, the whole time your body is bouncing up and down. And, I do fitness classes, and bellydancing.
Just some ideas. You need thing that will keep her interest.

Courteney sounds like an awesome kid!

 

[Scarlett81]

I would probably start doing chest PT if it was my kid. It's a major pain in the you know what, but even if it helps a little? And is Courteney active? That's great for keeping the mucous moving and getting it out. Maybe you could find a sport or hobby that would interest her. I do horseback riding. Great for lungs, the whole time your body is bouncing up and down. And, I do fitness classes, and bellydancing.
Just some ideas. You need thing that will keep her interest.

Courteney sounds like an awesome kid!

 

[Seana30]

<P>I will be calling the doc this morning to see if the rest of the sputum culture results are back.  I am going to talk to him about CPT today.Courtney is VERY active in track.  She was very upset because she had her district track meet yesterday and did not get to go.  She qualified for the hurdles, 3 relay races, long jump, and high jump.  She is REALLY good at it.I joke with her and tell her that because she has no meat on her bones she can run like the wind......lol.Seana</P>

 

[Seana30]

<P>I will be calling the doc this morning to see if the rest of the sputum culture results are back.  I am going to talk to him about CPT today.Courtney is VERY active in track.  She was very upset because she had her district track meet yesterday and did not get to go.  She qualified for the hurdles, 3 relay races, long jump, and high jump.  She is REALLY good at it.I joke with her and tell her that because she has no meat on her bones she can run like the wind......lol.Seana</P>

 

[NoExcuses]

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[NoExcuses]

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