this sickness is getting to me?

B

bmombtoo

New member
<br><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">I got the called from the CF nurse yesterday that Josh tested positive for a
pseudomona, she said there was a little in his culture. Last week at his check
up the doctor added in Spirvia. She called in Cipro and he will start Tobi
twice a day on Saturday when it is delivered. I just talked to his pediatrician
and told her I was worried that he would die. She assured me that while this is
not good to have it am curable whereas years ago it wasn't. He looks great, is
eating well, and is no longer sleeping all day as he was when he had to go in
the hospital in early June. He is even going outside and playing basketball
(when allowed, we had 100 degree weather today).</font><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">I know most of you guys have been there and I just need to hear some true
but calming thoughts.</font><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">Dolline</font><font color="#000000" size="3" face="Times New Roman">

</font>
 
B

bmombtoo

New member
<br><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">I got the called from the CF nurse yesterday that Josh tested positive for a
pseudomona, she said there was a little in his culture. Last week at his check
up the doctor added in Spirvia. She called in Cipro and he will start Tobi
twice a day on Saturday when it is delivered. I just talked to his pediatrician
and told her I was worried that he would die. She assured me that while this is
not good to have it am curable whereas years ago it wasn't. He looks great, is
eating well, and is no longer sleeping all day as he was when he had to go in
the hospital in early June. He is even going outside and playing basketball
(when allowed, we had 100 degree weather today).</font><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">I know most of you guys have been there and I just need to hear some true
but calming thoughts.</font><font color="#000000" size="3" face="Times New Roman">

</font><font color="#000000" size="2">Dolline</font><font color="#000000" size="3" face="Times New Roman">

</font>
 
B

bmombtoo

New member
<p><br><font color="#000000" size="3" face="Times New Roman">

</font><p><font color="#000000" size="2">I got the called from the CF nurse yesterday that Josh tested positive for a
pseudomona, she said there was a little in his culture. Last week at his check
up the doctor added in Spirvia. She called in Cipro and he will start Tobi
twice a day on Saturday when it is delivered. I just talked to his pediatrician
and told her I was worried that he would die. She assured me that while this is
not good to have it am curable whereas years ago it wasn't. He looks great, is
eating well, and is no longer sleeping all day as he was when he had to go in
the hospital in early June. He is even going outside and playing basketball
(when allowed, we had 100 degree weather today).</font><p><font color="#000000" size="3" face="Times New Roman">

</font><p><font color="#000000" size="2">I know most of you guys have been there and I just need to hear some true
but calming thoughts.</font><p><font color="#000000" size="3" face="Times New Roman">

</font><p><font color="#000000" size="2">Dolline</font><p><font color="#000000" size="3" face="Times New Roman">

</font>
 
T

tesorotiffa

New member
Well I've cultured Pseudomonas since I was young (8-9ish I think), and I am thriving! So don't let this get you down. I know just saying that doesn't make you feel any better, but just know that Pseudomonas is such a common thing for us to culture, and most of the new meds that are out are for treating that bug. He needs to make his treatments a priority...but he will do great.
 
T

tesorotiffa

New member
Well I've cultured Pseudomonas since I was young (8-9ish I think), and I am thriving! So don't let this get you down. I know just saying that doesn't make you feel any better, but just know that Pseudomonas is such a common thing for us to culture, and most of the new meds that are out are for treating that bug. He needs to make his treatments a priority...but he will do great.
 
T

tesorotiffa

New member
Well I've cultured Pseudomonas since I was young (8-9ish I think), and I am thriving! So don't let this get you down. I know just saying that doesn't make you feel any better, but just know that Pseudomonas is such a common thing for us to culture, and most of the new meds that are out are for treating that bug. He needs to make his treatments a priority...but he will do great.
 
R

Ratatosk

Administrator
Staff member
The first time DS cultured pseudo, it felt like a punch in the gut. As if we received a diagnosis all over again as it really hit home that he did in fact have cf. We'd had the diagnosis of cf, but this made it real. With every new medication or addition of treatments, it takes a bit of an adjustment. I just remind myself that these medications will help him.

DS does his tobi while playing video games, which makes the time go faster. Just something we have to do so he can stay happy and healthy (and play outside in this weather).
 
R

Ratatosk

Administrator
Staff member
The first time DS cultured pseudo, it felt like a punch in the gut. As if we received a diagnosis all over again as it really hit home that he did in fact have cf. We'd had the diagnosis of cf, but this made it real. With every new medication or addition of treatments, it takes a bit of an adjustment. I just remind myself that these medications will help him.

DS does his tobi while playing video games, which makes the time go faster. Just something we have to do so he can stay happy and healthy (and play outside in this weather).
 
R

Ratatosk

Administrator
Staff member
The first time DS cultured pseudo, it felt like a punch in the gut. As if we received a diagnosis all over again as it really hit home that he did in fact have cf. We'd had the diagnosis of cf, but this made it real. With every new medication or addition of treatments, it takes a bit of an adjustment. I just remind myself that these medications will help him.
<br />
<br />DS does his tobi while playing video games, which makes the time go faster. Just something we have to do so he can stay happy and healthy (and play outside in this weather).
 
S

StraitLife

New member
<P>Dolline,</P>
<P>My son Brady is 18 with CF.  He cultured pseudomonas several years ago after a wonderful CF visit.  It surprised all of us, including his doctor, because the kid showed no symptoms at all.  I remember being absolutely devastated and scared out of my mind.  But after a round of Tobi, it cleared up and he hasn't grown it since.  Everything turned out okay.  He is still healthy and doing amazing!  Just hang in there.  :) </P>
<P>Wendy</P>
 
S

StraitLife

New member
<P>Dolline,</P>
<P>My son Brady is 18 with CF. He cultured pseudomonas several years ago after a wonderful CF visit. It surprised all of us, including his doctor, because the kid showed no symptoms at all.I remember being absolutely devastated and scared out of my mind. But after a round of Tobi, itcleared up and he hasn't grown it since. Everythingturned out okay. He is still healthy and doing amazing! Justhang in there. :) </P>
<P>Wendy</P>
 
S

StraitLife

New member
<P><BR>Dolline,</P>
<P>My son Brady is 18 with CF. He cultured pseudomonas several years ago after a wonderful CF visit. It surprised all of us, including his doctor, because the kid showed no symptoms at all.I remember being absolutely devastated and scared out of my mind. But after a round of Tobi, itcleared up and he hasn't grown it since. Everythingturned out okay. He is still healthy and doing amazing! Justhang in there. :) </P>
<P>Wendy</P>
 
B

bmombtoo

New member
Thanks for responding. It really helps me to talk to you guys about this. I was so upset yesterday and I couldn't even work on my final paper for my degree. After tesorotiffa post I felt much better and I told my husband about it his morning. Wendy and Liza, you are both right. Each time he gets a new med and when he went in the hospital in June (his first hospitalization since age two) I realize that this disease is real, it's no longer just managing symptoms that are asthma like.

I feel so much better today and thanks for being there.
 
B

bmombtoo

New member
Thanks for responding. It really helps me to talk to you guys about this. I was so upset yesterday and I couldn't even work on my final paper for my degree. After tesorotiffa post I felt much better and I told my husband about it his morning. Wendy and Liza, you are both right. Each time he gets a new med and when he went in the hospital in June (his first hospitalization since age two) I realize that this disease is real, it's no longer just managing symptoms that are asthma like.

I feel so much better today and thanks for being there.
 
B

bmombtoo

New member
Thanks for responding. It really helps me to talk to you guys about this. I was so upset yesterday and I couldn't even work on my final paper for my degree. After tesorotiffa post I felt much better and I told my husband about it his morning. Wendy and Liza, you are both right. Each time he gets a new med and when he went in the hospital in June (his first hospitalization since age two) I realize that this disease is real, it's no longer just managing symptoms that are asthma like.
<br />
<br />I feel so much better today and thanks for being there.
<br />
<br />
 
I

imported_Momto2

New member
Dolline, I cultured Pseudomonas when I was in preschool and then when I was about 10, it just, disappeared. I'm 40 now, married to a wonderful husband and have two daughters. You cant change much by worrying about your son's CF, but what you CAN do is provide the best nutrition, emotional support, encouragement for daily exercise, and make sure the meds are taken- it will make a huge difference. Be strong for him, dont let the fear of the future control your family, but make smart choices. My parents never showed any doubt to me as a kid that I could do anything, be anything, accomplish anything. They supported me and encouraged me to have big dreams. CF is only a part of me, it does not define me or my spirit. Hope and will power will get your child far. And yes, there WILL be a treatment that is close to a cure in the next decade.
 
I

imported_Momto2

New member
Dolline, I cultured Pseudomonas when I was in preschool and then when I was about 10, it just, disappeared. I'm 40 now, married to a wonderful husband and have two daughters. You cant change much by worrying about your son's CF, but what you CAN do is provide the best nutrition, emotional support, encouragement for daily exercise, and make sure the meds are taken- it will make a huge difference. Be strong for him, dont let the fear of the future control your family, but make smart choices. My parents never showed any doubt to me as a kid that I could do anything, be anything, accomplish anything. They supported me and encouraged me to have big dreams. CF is only a part of me, it does not define me or my spirit. Hope and will power will get your child far. And yes, there WILL be a treatment that is close to a cure in the next decade.
 
I

imported_Momto2

New member
Dolline, I cultured Pseudomonas when I was in preschool and then when I was about 10, it just, disappeared. I'm 40 now, married to a wonderful husband and have two daughters. You cant change much by worrying about your son's CF, but what you CAN do is provide the best nutrition, emotional support, encouragement for daily exercise, and make sure the meds are taken- it will make a huge difference. Be strong for him, dont let the fear of the future control your family, but make smart choices. My parents never showed any doubt to me as a kid that I could do anything, be anything, accomplish anything. They supported me and encouraged me to have big dreams. CF is only a part of me, it does not define me or my spirit. Hope and will power will get your child far. And yes, there WILL be a treatment that is close to a cure in the next decade.
 
R

redheadedmommy

New member
me and my daughter have both tested positive for it.. were doing awesome !! treatments are a big part in it!! us CFers are tough<img src="i/expressions/face-icon-small-smile.gif" border="0">!
 
R

redheadedmommy

New member
me and my daughter have both tested positive for it.. were doing awesome !! treatments are a big part in it!! us CFers are tough<img src="i/expressions/face-icon-small-smile.gif" border="0">!
 
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