Back in Lock-up :(

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Gingerloveslife

New member
Hi everybody! I was put back in the hospital on Friday. My FEV1 was down to 38%--its lowest ever. Up until this May my Fev1 had never been below the 50's. We think it is probably just the psuedomonas flaring its ugly head again, but we just don't know. I had been stable so many years and now this year I am just going down, down, down.

Any hopeful thoughts, reassuring stories that you can go down and back up after a 20% drop, or just anything to calm me would be appreciated.

Also, another weird thing is that I am still saturating between 97-100%, which is really good but seems weird since the pfts are so low.

Do any of yall know of things the doctor may be missing to have them check? I just do not want to stay on this downward spiral.

Thanks everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Gingerloveslife

New member
Hi everybody! I was put back in the hospital on Friday. My FEV1 was down to 38%--its lowest ever. Up until this May my Fev1 had never been below the 50's. We think it is probably just the psuedomonas flaring its ugly head again, but we just don't know. I had been stable so many years and now this year I am just going down, down, down.

Any hopeful thoughts, reassuring stories that you can go down and back up after a 20% drop, or just anything to calm me would be appreciated.

Also, another weird thing is that I am still saturating between 97-100%, which is really good but seems weird since the pfts are so low.

Do any of yall know of things the doctor may be missing to have them check? I just do not want to stay on this downward spiral.

Thanks everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Gingerloveslife

New member
Hi everybody! I was put back in the hospital on Friday. My FEV1 was down to 38%--its lowest ever. Up until this May my Fev1 had never been below the 50's. We think it is probably just the psuedomonas flaring its ugly head again, but we just don't know. I had been stable so many years and now this year I am just going down, down, down.

Any hopeful thoughts, reassuring stories that you can go down and back up after a 20% drop, or just anything to calm me would be appreciated.

Also, another weird thing is that I am still saturating between 97-100%, which is really good but seems weird since the pfts are so low.

Do any of yall know of things the doctor may be missing to have them check? I just do not want to stay on this downward spiral.

Thanks everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Gingerloveslife

New member
Hi everybody! I was put back in the hospital on Friday. My FEV1 was down to 38%--its lowest ever. Up until this May my Fev1 had never been below the 50's. We think it is probably just the psuedomonas flaring its ugly head again, but we just don't know. I had been stable so many years and now this year I am just going down, down, down.

Any hopeful thoughts, reassuring stories that you can go down and back up after a 20% drop, or just anything to calm me would be appreciated.

Also, another weird thing is that I am still saturating between 97-100%, which is really good but seems weird since the pfts are so low.

Do any of yall know of things the doctor may be missing to have them check? I just do not want to stay on this downward spiral.

Thanks everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
G

Gingerloveslife

New member
Hi everybody! I was put back in the hospital on Friday. My FEV1 was down to 38%--its lowest ever. Up until this May my Fev1 had never been below the 50's. We think it is probably just the psuedomonas flaring its ugly head again, but we just don't know. I had been stable so many years and now this year I am just going down, down, down.
<br />
<br />Any hopeful thoughts, reassuring stories that you can go down and back up after a 20% drop, or just anything to calm me would be appreciated.
<br />
<br />Also, another weird thing is that I am still saturating between 97-100%, which is really good but seems weird since the pfts are so low.
<br />
<br />Do any of yall know of things the doctor may be missing to have them check? I just do not want to stay on this downward spiral.
<br />
<br />Thanks everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

Juliet

New member
Hi Ginger, Sorry things aren't going to well for you. I did get a big gain in my PFTs - from the low 50s (53) back up to (what I hope is baseline) the low 70s (74 was my best, but I usually blow a 71 or 72). In my case the increase was treatment of a mycobacterial infection followed by IV abx cocktail to get my staph aureus back under control. 18 months of mac drugs made my staph resistant to my usual orals. Best of luck. I hope the doctors figure out a combo that works for you so you can bounce back. <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Juliet
 
J

Juliet

New member
Hi Ginger, Sorry things aren't going to well for you. I did get a big gain in my PFTs - from the low 50s (53) back up to (what I hope is baseline) the low 70s (74 was my best, but I usually blow a 71 or 72). In my case the increase was treatment of a mycobacterial infection followed by IV abx cocktail to get my staph aureus back under control. 18 months of mac drugs made my staph resistant to my usual orals. Best of luck. I hope the doctors figure out a combo that works for you so you can bounce back. <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Juliet
 
J

Juliet

New member
Hi Ginger, Sorry things aren't going to well for you. I did get a big gain in my PFTs - from the low 50s (53) back up to (what I hope is baseline) the low 70s (74 was my best, but I usually blow a 71 or 72). In my case the increase was treatment of a mycobacterial infection followed by IV abx cocktail to get my staph aureus back under control. 18 months of mac drugs made my staph resistant to my usual orals. Best of luck. I hope the doctors figure out a combo that works for you so you can bounce back. <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Juliet
 
J

Juliet

New member
Hi Ginger, Sorry things aren't going to well for you. I did get a big gain in my PFTs - from the low 50s (53) back up to (what I hope is baseline) the low 70s (74 was my best, but I usually blow a 71 or 72). In my case the increase was treatment of a mycobacterial infection followed by IV abx cocktail to get my staph aureus back under control. 18 months of mac drugs made my staph resistant to my usual orals. Best of luck. I hope the doctors figure out a combo that works for you so you can bounce back. <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Juliet
 
J

Juliet

New member
Hi Ginger, Sorry things aren't going to well for you. I did get a big gain in my PFTs - from the low 50s (53) back up to (what I hope is baseline) the low 70s (74 was my best, but I usually blow a 71 or 72). In my case the increase was treatment of a mycobacterial infection followed by IV abx cocktail to get my staph aureus back under control. 18 months of mac drugs made my staph resistant to my usual orals. Best of luck. I hope the doctors figure out a combo that works for you so you can bounce back. <img src="i/expressions/face-icon-small-smile.gif" border="0"> ~Juliet
 
P

pjspiegle

New member
Nathan has dropped more than 20% before and made it back to baseline. It usually takes him up to a year to do so and being really active with 4 treatments a day. Have you ever done both the IPV and VEST at the same time together for a couple of treatments a day? Nathan started doing that a year or so ago and it really helps him. In the hosptial he does 5 treatments a day, 2 just vest and 3 IPV and VEST at the same time together.

I hope you get well soon!

Patty
 
P

pjspiegle

New member
Nathan has dropped more than 20% before and made it back to baseline. It usually takes him up to a year to do so and being really active with 4 treatments a day. Have you ever done both the IPV and VEST at the same time together for a couple of treatments a day? Nathan started doing that a year or so ago and it really helps him. In the hosptial he does 5 treatments a day, 2 just vest and 3 IPV and VEST at the same time together.

I hope you get well soon!

Patty
 
P

pjspiegle

New member
Nathan has dropped more than 20% before and made it back to baseline. It usually takes him up to a year to do so and being really active with 4 treatments a day. Have you ever done both the IPV and VEST at the same time together for a couple of treatments a day? Nathan started doing that a year or so ago and it really helps him. In the hosptial he does 5 treatments a day, 2 just vest and 3 IPV and VEST at the same time together.

I hope you get well soon!

Patty
 
P

pjspiegle

New member
Nathan has dropped more than 20% before and made it back to baseline. It usually takes him up to a year to do so and being really active with 4 treatments a day. Have you ever done both the IPV and VEST at the same time together for a couple of treatments a day? Nathan started doing that a year or so ago and it really helps him. In the hosptial he does 5 treatments a day, 2 just vest and 3 IPV and VEST at the same time together.

I hope you get well soon!

Patty
 
P

pjspiegle

New member
Nathan has dropped more than 20% before and made it back to baseline. It usually takes him up to a year to do so and being really active with 4 treatments a day. Have you ever done both the IPV and VEST at the same time together for a couple of treatments a day? Nathan started doing that a year or so ago and it really helps him. In the hosptial he does 5 treatments a day, 2 just vest and 3 IPV and VEST at the same time together.
<br />
<br />I hope you get well soon!
<br />
<br />Patty
 
M

MOME2RT

New member
Reece usually goes in for a big drop in pfts. Friday he was admitted for low pfts...they were 34% & his baseline is 60%-65%.

He will retake them tomorrow. Usually by 5-8 days they go back up to his baseline. His normal cocktail of antis are Tobra, Timentin & Linezoild (14-21 days)

Hope this helps & I hope you start to feel better soon. Oh & Reeces' stats have been 95-97 too.
 
M

MOME2RT

New member
Reece usually goes in for a big drop in pfts. Friday he was admitted for low pfts...they were 34% & his baseline is 60%-65%.

He will retake them tomorrow. Usually by 5-8 days they go back up to his baseline. His normal cocktail of antis are Tobra, Timentin & Linezoild (14-21 days)

Hope this helps & I hope you start to feel better soon. Oh & Reeces' stats have been 95-97 too.
 
M

MOME2RT

New member
Reece usually goes in for a big drop in pfts. Friday he was admitted for low pfts...they were 34% & his baseline is 60%-65%.

He will retake them tomorrow. Usually by 5-8 days they go back up to his baseline. His normal cocktail of antis are Tobra, Timentin & Linezoild (14-21 days)

Hope this helps & I hope you start to feel better soon. Oh & Reeces' stats have been 95-97 too.
 
M

MOME2RT

New member
Reece usually goes in for a big drop in pfts. Friday he was admitted for low pfts...they were 34% & his baseline is 60%-65%.

He will retake them tomorrow. Usually by 5-8 days they go back up to his baseline. His normal cocktail of antis are Tobra, Timentin & Linezoild (14-21 days)

Hope this helps & I hope you start to feel better soon. Oh & Reeces' stats have been 95-97 too.
 
M

MOME2RT

New member
Reece usually goes in for a big drop in pfts. Friday he was admitted for low pfts...they were 34% & his baseline is 60%-65%.
<br />
<br />He will retake them tomorrow. Usually by 5-8 days they go back up to his baseline. His normal cocktail of antis are Tobra, Timentin & Linezoild (14-21 days)
<br />
<br />Hope this helps & I hope you start to feel better soon. Oh & Reeces' stats have been 95-97 too.
 
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