FEV1 still low

[sarabeth87]

I went to see my CF doc yesterday (I went to a local clinic on Tuesday because I was having severe chest pains). I was suppose to go next week, but because of the chest pains and the fact that the local doctor prescribed me 3 things that I couldn't take, she wanted me to go ahead and come in.
She sent me for X-rays and said I didn't have pluersy, like the local doctor said I had. In fact, she didn't know what was wrong. But anyways, I was feeling better. So she sent me to do PFT's and my FEV1 was still at 64%, which is the same as last time. I am sooooo dissapointed because I've been working so hard to bring it back up. I was sure that it would be higher.
But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?

 

[sarabeth87]

I went to see my CF doc yesterday (I went to a local clinic on Tuesday because I was having severe chest pains). I was suppose to go next week, but because of the chest pains and the fact that the local doctor prescribed me 3 things that I couldn't take, she wanted me to go ahead and come in.
She sent me for X-rays and said I didn't have pluersy, like the local doctor said I had. In fact, she didn't know what was wrong. But anyways, I was feeling better. So she sent me to do PFT's and my FEV1 was still at 64%, which is the same as last time. I am sooooo dissapointed because I've been working so hard to bring it back up. I was sure that it would be higher.
But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?

 

[sarabeth87]

I went to see my CF doc yesterday (I went to a local clinic on Tuesday because I was having severe chest pains). I was suppose to go next week, but because of the chest pains and the fact that the local doctor prescribed me 3 things that I couldn't take, she wanted me to go ahead and come in.
She sent me for X-rays and said I didn't have pluersy, like the local doctor said I had. In fact, she didn't know what was wrong. But anyways, I was feeling better. So she sent me to do PFT's and my FEV1 was still at 64%, which is the same as last time. I am sooooo dissapointed because I've been working so hard to bring it back up. I was sure that it would be higher.
But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?

 

[LouLou]

A good thing to always ask of any treatment...

1. What are the benefits?
2. What are the side effects?
3. What is the next step if this doesn't work?

That last one is a question that would give you a direct answer to your post's question. I'm guessing you haven't even talked IV's with her. When are you due to go back? I would get #3 answered immediately. Part of your frustration to me sounds like it comes from being out of control. Get answers in advance so you can see the course you are plotting.

 

[LouLou]

A good thing to always ask of any treatment...

1. What are the benefits?
2. What are the side effects?
3. What is the next step if this doesn't work?

That last one is a question that would give you a direct answer to your post's question. I'm guessing you haven't even talked IV's with her. When are you due to go back? I would get #3 answered immediately. Part of your frustration to me sounds like it comes from being out of control. Get answers in advance so you can see the course you are plotting.

 

[LouLou]

A good thing to always ask of any treatment...

1. What are the benefits?
2. What are the side effects?
3. What is the next step if this doesn't work?

That last one is a question that would give you a direct answer to your post's question. I'm guessing you haven't even talked IV's with her. When are you due to go back? I would get #3 answered immediately. Part of your frustration to me sounds like it comes from being out of control. Get answers in advance so you can see the course you are plotting.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sarabeth87</b></i>

But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?</end quote></div>

I wouldnt wait until June.....you dont know what additonal damage will be done between now and then. The oral thing is working well enough. That seems rather obvious to me. I dont know why its not to her. IF she refuses to do iv's with you I would seriously consider finding another practioner and maybe even tell her this. You are too young to be messing around.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sarabeth87</b></i>

But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?</end quote></div>

I wouldnt wait until June.....you dont know what additonal damage will be done between now and then. The oral thing is working well enough. That seems rather obvious to me. I dont know why its not to her. IF she refuses to do iv's with you I would seriously consider finding another practioner and maybe even tell her this. You are too young to be messing around.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sarabeth87</b></i>

But anyways, my problem is this. I'm about to be 20, I've never been in the hospital on IVs. My PFTs have gone from the 90s to the 60s in the past year and she still won't admit me. She keeps putting me on oral antibiotics. When I take them, I will feel better for about a week and then I feel like crap again. It's not that I want to be in the hospital, but I don't want to keep getting sicker. Should I just tell her next time (I go back in June) to put me in if my FEV1 isn't better?</end quote></div>

I wouldnt wait until June.....you dont know what additonal damage will be done between now and then. The oral thing is working well enough. That seems rather obvious to me. I dont know why its not to her. IF she refuses to do iv's with you I would seriously consider finding another practioner and maybe even tell her this. You are too young to be messing around.

 

[mom2lillian]

I would not wait util June. Call doctor asap, their current course action makes no sense. Is there another pulmo in the area you can get a 2nd opinion or switch to?

 

[mom2lillian]

I would not wait util June. Call doctor asap, their current course action makes no sense. Is there another pulmo in the area you can get a 2nd opinion or switch to?

 

[mom2lillian]

I would not wait util June. Call doctor asap, their current course action makes no sense. Is there another pulmo in the area you can get a 2nd opinion or switch to?

 

[Asexyblond23]

I would not wait until June. You know your body better then anyone. If the oral seem to bot be working then I think you need to talk to her now about the next option, you dont want to have more damage by waiting. You have to be agressive with your health, no one else will for you!

 

[Asexyblond23]

I would not wait until June. You know your body better then anyone. If the oral seem to bot be working then I think you need to talk to her now about the next option, you dont want to have more damage by waiting. You have to be agressive with your health, no one else will for you!

 

[Asexyblond23]

I would not wait until June. You know your body better then anyone. If the oral seem to bot be working then I think you need to talk to her now about the next option, you dont want to have more damage by waiting. You have to be agressive with your health, no one else will for you!

 

[NoExcuses]

Your doctor better hope he/she doesn't run into me on the street.

J/k but really i'm just infuriated at her treatment of you.

This isn't a game...this isn't a rehearsal... this is real life. You have one pair of lungs and you can't afford to play games with permanent lung damage.

This is your coming age moment, girl. You need to demand what you know is best for you. You have slipped 30% and some of that you may never gain back.

You dont want to slip more.......

You need IV's. You need aggressive, proactive treatment or you will go downhill.

I don't want to see that. You dont want to see that. No one does.

It's up to you to demand what you need. Go get 'em....

 

[NoExcuses]

Your doctor better hope he/she doesn't run into me on the street.

J/k but really i'm just infuriated at her treatment of you.

This isn't a game...this isn't a rehearsal... this is real life. You have one pair of lungs and you can't afford to play games with permanent lung damage.

This is your coming age moment, girl. You need to demand what you know is best for you. You have slipped 30% and some of that you may never gain back.

You dont want to slip more.......

You need IV's. You need aggressive, proactive treatment or you will go downhill.

I don't want to see that. You dont want to see that. No one does.

It's up to you to demand what you need. Go get 'em....

 

[NoExcuses]

Your doctor better hope he/she doesn't run into me on the street.

J/k but really i'm just infuriated at her treatment of you.

This isn't a game...this isn't a rehearsal... this is real life. You have one pair of lungs and you can't afford to play games with permanent lung damage.

This is your coming age moment, girl. You need to demand what you know is best for you. You have slipped 30% and some of that you may never gain back.

You dont want to slip more.......

You need IV's. You need aggressive, proactive treatment or you will go downhill.

I don't want to see that. You dont want to see that. No one does.

It's up to you to demand what you need. Go get 'em....

 

[beleache]

You are thinking this way for a very good reason. We usually know when things are not working (better than anyone) trust your instincts.. Where do you live ? maybe you can find another clinic in your area ? If you dont like the way things are going, take the bull by the horns (so to speak) and do something... its your health and your life.... Keep us posted... God Bless Joni 55 y/o f w c/f

 

[beleache]

You are thinking this way for a very good reason. We usually know when things are not working (better than anyone) trust your instincts.. Where do you live ? maybe you can find another clinic in your area ? If you dont like the way things are going, take the bull by the horns (so to speak) and do something... its your health and your life.... Keep us posted... God Bless Joni 55 y/o f w c/f