Is this normal?

J

JazzysMom

New member
First of all I am sorry to hear Andrew is going back in.

For me there is no rhyme or reason as to when I have exacerbations that I just cant kick. Sometimes something just needs to "click" before all the work & meds we do pays off! That is why I am one of the people that say meds, compliance, environment, attitude & LUCK all play a part in our clinical outcome.

The more damage that gets done the harder it is to get back to baseline. For me the biggest problem I have is just controlling/killing the bacteria. Finding the right c0cktail of meds is key for me since just 1 or 2 dont work anymore. Sadly some of the meds that work best for me also cause havoc on my liver.

ANYWAYS.....Good Luck & Keep us updated!

HUGS
 
J

JazzysMom

New member
First of all I am sorry to hear Andrew is going back in.

For me there is no rhyme or reason as to when I have exacerbations that I just cant kick. Sometimes something just needs to "click" before all the work & meds we do pays off! That is why I am one of the people that say meds, compliance, environment, attitude & LUCK all play a part in our clinical outcome.

The more damage that gets done the harder it is to get back to baseline. For me the biggest problem I have is just controlling/killing the bacteria. Finding the right c0cktail of meds is key for me since just 1 or 2 dont work anymore. Sadly some of the meds that work best for me also cause havoc on my liver.

ANYWAYS.....Good Luck & Keep us updated!

HUGS
 
J

JazzysMom

New member
First of all I am sorry to hear Andrew is going back in.

For me there is no rhyme or reason as to when I have exacerbations that I just cant kick. Sometimes something just needs to "click" before all the work & meds we do pays off! That is why I am one of the people that say meds, compliance, environment, attitude & LUCK all play a part in our clinical outcome.

The more damage that gets done the harder it is to get back to baseline. For me the biggest problem I have is just controlling/killing the bacteria. Finding the right c0cktail of meds is key for me since just 1 or 2 dont work anymore. Sadly some of the meds that work best for me also cause havoc on my liver.

ANYWAYS.....Good Luck & Keep us updated!

HUGS
 
J

JazzysMom

New member
First of all I am sorry to hear Andrew is going back in.

For me there is no rhyme or reason as to when I have exacerbations that I just cant kick. Sometimes something just needs to "click" before all the work & meds we do pays off! That is why I am one of the people that say meds, compliance, environment, attitude & LUCK all play a part in our clinical outcome.

The more damage that gets done the harder it is to get back to baseline. For me the biggest problem I have is just controlling/killing the bacteria. Finding the right c0cktail of meds is key for me since just 1 or 2 dont work anymore. Sadly some of the meds that work best for me also cause havoc on my liver.

ANYWAYS.....Good Luck & Keep us updated!

HUGS
 
J

JazzysMom

New member
First of all I am sorry to hear Andrew is going back in.
<br />
<br />For me there is no rhyme or reason as to when I have exacerbations that I just cant kick. Sometimes something just needs to "click" before all the work & meds we do pays off! That is why I am one of the people that say meds, compliance, environment, attitude & LUCK all play a part in our clinical outcome.
<br />
<br />The more damage that gets done the harder it is to get back to baseline. For me the biggest problem I have is just controlling/killing the bacteria. Finding the right c0cktail of meds is key for me since just 1 or 2 dont work anymore. Sadly some of the meds that work best for me also cause havoc on my liver.
<br />
<br />ANYWAYS.....Good Luck & Keep us updated!
<br />
<br />HUGS
 
B

barbc888

New member
Tonya,

I have nothing to add, but just wanted to say I'm sorry Andrew is going through this terrible hurdle. I'm sure he just wants to be a regular kid right now. I hope you find some answers that puts your mind at ease.

Barbara
 
B

barbc888

New member
Tonya,

I have nothing to add, but just wanted to say I'm sorry Andrew is going through this terrible hurdle. I'm sure he just wants to be a regular kid right now. I hope you find some answers that puts your mind at ease.

Barbara
 
B

barbc888

New member
Tonya,

I have nothing to add, but just wanted to say I'm sorry Andrew is going through this terrible hurdle. I'm sure he just wants to be a regular kid right now. I hope you find some answers that puts your mind at ease.

Barbara
 
B

barbc888

New member
Tonya,

I have nothing to add, but just wanted to say I'm sorry Andrew is going through this terrible hurdle. I'm sure he just wants to be a regular kid right now. I hope you find some answers that puts your mind at ease.

Barbara
 
B

barbc888

New member
Tonya,
<br />
<br />I have nothing to add, but just wanted to say I'm sorry Andrew is going through this terrible hurdle. I'm sure he just wants to be a regular kid right now. I hope you find some answers that puts your mind at ease.
<br />
<br />Barbara
<br />
<br />
 
T

TonyaH

Guest
Thanks everyone. I'm frustrated right now because he just had a bronchoscopy and I'm not thrilled about another one less than a year later. And there is nothing saying that this one won't tell us anything different. I feel like we just keep putting him on iv abx for the heck of it, which I know in my head is not true, but I am not a "medicine" person myself. I don't pop tylenol unless I REALLY need it. So, it is very irritating to think that those heavy duty iv abx have been pumped through his veins for no reason. Third time BETTER be the charm!

I can tell you, though, that he feels well. I was really surprised by his pfts Tuesday because he has been doing very well lately. I don't know if that makes it easier or harder to tell him he's going back in. (We're waiting until school gets out next Wednesday so he can enjoy the rest of his school year without worrying about this.)
 
T

TonyaH

Guest
Thanks everyone. I'm frustrated right now because he just had a bronchoscopy and I'm not thrilled about another one less than a year later. And there is nothing saying that this one won't tell us anything different. I feel like we just keep putting him on iv abx for the heck of it, which I know in my head is not true, but I am not a "medicine" person myself. I don't pop tylenol unless I REALLY need it. So, it is very irritating to think that those heavy duty iv abx have been pumped through his veins for no reason. Third time BETTER be the charm!

I can tell you, though, that he feels well. I was really surprised by his pfts Tuesday because he has been doing very well lately. I don't know if that makes it easier or harder to tell him he's going back in. (We're waiting until school gets out next Wednesday so he can enjoy the rest of his school year without worrying about this.)
 
T

TonyaH

Guest
Thanks everyone. I'm frustrated right now because he just had a bronchoscopy and I'm not thrilled about another one less than a year later. And there is nothing saying that this one won't tell us anything different. I feel like we just keep putting him on iv abx for the heck of it, which I know in my head is not true, but I am not a "medicine" person myself. I don't pop tylenol unless I REALLY need it. So, it is very irritating to think that those heavy duty iv abx have been pumped through his veins for no reason. Third time BETTER be the charm!

I can tell you, though, that he feels well. I was really surprised by his pfts Tuesday because he has been doing very well lately. I don't know if that makes it easier or harder to tell him he's going back in. (We're waiting until school gets out next Wednesday so he can enjoy the rest of his school year without worrying about this.)
 
T

TonyaH

Guest
Thanks everyone. I'm frustrated right now because he just had a bronchoscopy and I'm not thrilled about another one less than a year later. And there is nothing saying that this one won't tell us anything different. I feel like we just keep putting him on iv abx for the heck of it, which I know in my head is not true, but I am not a "medicine" person myself. I don't pop tylenol unless I REALLY need it. So, it is very irritating to think that those heavy duty iv abx have been pumped through his veins for no reason. Third time BETTER be the charm!

I can tell you, though, that he feels well. I was really surprised by his pfts Tuesday because he has been doing very well lately. I don't know if that makes it easier or harder to tell him he's going back in. (We're waiting until school gets out next Wednesday so he can enjoy the rest of his school year without worrying about this.)
 
T

TonyaH

Guest
Thanks everyone. I'm frustrated right now because he just had a bronchoscopy and I'm not thrilled about another one less than a year later. And there is nothing saying that this one won't tell us anything different. I feel like we just keep putting him on iv abx for the heck of it, which I know in my head is not true, but I am not a "medicine" person myself. I don't pop tylenol unless I REALLY need it. So, it is very irritating to think that those heavy duty iv abx have been pumped through his veins for no reason. Third time BETTER be the charm!
<br />
<br />I can tell you, though, that he feels well. I was really surprised by his pfts Tuesday because he has been doing very well lately. I don't know if that makes it easier or harder to tell him he's going back in. (We're waiting until school gets out next Wednesday so he can enjoy the rest of his school year without worrying about this.)
 
N

NoExcuses

New member
Sounds like they're being proactive to me.... which is a great way to extend life.

Lots of people have the luxury to be sparse with medical treatment and only take things when they REALLY need it. I know many people like that. It's a luxury, no question.

But if you have the right doctors, which it sounds like you do, they don't want for things to be REALLY needed. They're proactive. So the great news is that it sounds like these docs are good.

All the best to you.
 
N

NoExcuses

New member
Sounds like they're being proactive to me.... which is a great way to extend life.

Lots of people have the luxury to be sparse with medical treatment and only take things when they REALLY need it. I know many people like that. It's a luxury, no question.

But if you have the right doctors, which it sounds like you do, they don't want for things to be REALLY needed. They're proactive. So the great news is that it sounds like these docs are good.

All the best to you.
 
N

NoExcuses

New member
Sounds like they're being proactive to me.... which is a great way to extend life.

Lots of people have the luxury to be sparse with medical treatment and only take things when they REALLY need it. I know many people like that. It's a luxury, no question.

But if you have the right doctors, which it sounds like you do, they don't want for things to be REALLY needed. They're proactive. So the great news is that it sounds like these docs are good.

All the best to you.
 
N

NoExcuses

New member
Sounds like they're being proactive to me.... which is a great way to extend life.

Lots of people have the luxury to be sparse with medical treatment and only take things when they REALLY need it. I know many people like that. It's a luxury, no question.

But if you have the right doctors, which it sounds like you do, they don't want for things to be REALLY needed. They're proactive. So the great news is that it sounds like these docs are good.

All the best to you.
 
N

NoExcuses

New member
Sounds like they're being proactive to me.... which is a great way to extend life.
<br />
<br />Lots of people have the luxury to be sparse with medical treatment and only take things when they REALLY need it. I know many people like that. It's a luxury, no question.
<br />
<br />But if you have the right doctors, which it sounds like you do, they don't want for things to be REALLY needed. They're proactive. So the great news is that it sounds like these docs are good.
<br />
<br />All the best to you.
 
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