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I am sad

C

CFTEAMA

New member
My CF nurse thinks that my PFT's have falln since I came into clinic. I had just gotton off IV's the week before I went into CF clinic. Most of the time my PFT's are in the 40's and 50's. And as AnD said I will tell you guys what I do everyday for treatments.

~Morning meds~
Caltrate Calcum 1 tablet
SourceCF A,B,D,E,and K 2 tablets
Womens One a day 1 tablet
Cymbalta 3 30mg tablets everyday
Ibuprofen 200mg 2 tablets
Prevacid 2 30mg tablets
Lactulose 10mg
Gycol 3350 NF powder 17 grams everyday]
Mucomist 1tsp everyday
Nasonex 3 sprays
Nasal sline 3 sprays
Atrovent 2 puffs
5 Pancerecarb MS-4
----------------------
Then:
Albuterol neb
Pluozyme neb
Hypertonic Saline neb
Pulocourt neb
Then my Vest for 20mins
Tobi neb
-----------------------
After noon
Albuterol neb
vest for 15mins
----------------------
Night time
Ibuprofen 2 tablets
Azithromycin 250mg
Albuterol neb
Pulozyme neb
pulocourt neb
my vest for 20mins
----------------------
Wake up do is all over.
Lung infections everyother 4 weeks that need IV's

The bugs that I have in my lungs are:
MRSA
3+ Gram positive cocci
I am not sure what the other one is.
 
C

CFTEAMA

New member
My CF nurse thinks that my PFT's have falln since I came into clinic. I had just gotton off IV's the week before I went into CF clinic. Most of the time my PFT's are in the 40's and 50's. And as AnD said I will tell you guys what I do everyday for treatments.

~Morning meds~
Caltrate Calcum 1 tablet
SourceCF A,B,D,E,and K 2 tablets
Womens One a day 1 tablet
Cymbalta 3 30mg tablets everyday
Ibuprofen 200mg 2 tablets
Prevacid 2 30mg tablets
Lactulose 10mg
Gycol 3350 NF powder 17 grams everyday]
Mucomist 1tsp everyday
Nasonex 3 sprays
Nasal sline 3 sprays
Atrovent 2 puffs
5 Pancerecarb MS-4
----------------------
Then:
Albuterol neb
Pluozyme neb
Hypertonic Saline neb
Pulocourt neb
Then my Vest for 20mins
Tobi neb
-----------------------
After noon
Albuterol neb
vest for 15mins
----------------------
Night time
Ibuprofen 2 tablets
Azithromycin 250mg
Albuterol neb
Pulozyme neb
pulocourt neb
my vest for 20mins
----------------------
Wake up do is all over.
Lung infections everyother 4 weeks that need IV's

The bugs that I have in my lungs are:
MRSA
3+ Gram positive cocci
I am not sure what the other one is.
 
C

CFTEAMA

New member
My CF nurse thinks that my PFT's have falln since I came into clinic. I had just gotton off IV's the week before I went into CF clinic. Most of the time my PFT's are in the 40's and 50's. And as AnD said I will tell you guys what I do everyday for treatments.

~Morning meds~
Caltrate Calcum 1 tablet
SourceCF A,B,D,E,and K 2 tablets
Womens One a day 1 tablet
Cymbalta 3 30mg tablets everyday
Ibuprofen 200mg 2 tablets
Prevacid 2 30mg tablets
Lactulose 10mg
Gycol 3350 NF powder 17 grams everyday]
Mucomist 1tsp everyday
Nasonex 3 sprays
Nasal sline 3 sprays
Atrovent 2 puffs
5 Pancerecarb MS-4
----------------------
Then:
Albuterol neb
Pluozyme neb
Hypertonic Saline neb
Pulocourt neb
Then my Vest for 20mins
Tobi neb
-----------------------
After noon
Albuterol neb
vest for 15mins
----------------------
Night time
Ibuprofen 2 tablets
Azithromycin 250mg
Albuterol neb
Pulozyme neb
pulocourt neb
my vest for 20mins
----------------------
Wake up do is all over.
Lung infections everyother 4 weeks that need IV's

The bugs that I have in my lungs are:
MRSA
3+ Gram positive cocci
I am not sure what the other one is.
 
C

CFTEAMA

New member
My CF nurse thinks that my PFT's have falln since I came into clinic. I had just gotton off IV's the week before I went into CF clinic. Most of the time my PFT's are in the 40's and 50's. And as AnD said I will tell you guys what I do everyday for treatments.

~Morning meds~
Caltrate Calcum 1 tablet
SourceCF A,B,D,E,and K 2 tablets
Womens One a day 1 tablet
Cymbalta 3 30mg tablets everyday
Ibuprofen 200mg 2 tablets
Prevacid 2 30mg tablets
Lactulose 10mg
Gycol 3350 NF powder 17 grams everyday]
Mucomist 1tsp everyday
Nasonex 3 sprays
Nasal sline 3 sprays
Atrovent 2 puffs
5 Pancerecarb MS-4
----------------------
Then:
Albuterol neb
Pluozyme neb
Hypertonic Saline neb
Pulocourt neb
Then my Vest for 20mins
Tobi neb
-----------------------
After noon
Albuterol neb
vest for 15mins
----------------------
Night time
Ibuprofen 2 tablets
Azithromycin 250mg
Albuterol neb
Pulozyme neb
pulocourt neb
my vest for 20mins
----------------------
Wake up do is all over.
Lung infections everyother 4 weeks that need IV's

The bugs that I have in my lungs are:
MRSA
3+ Gram positive cocci
I am not sure what the other one is.
 
C

CFTEAMA

New member
My CF nurse thinks that my PFT's have falln since I came into clinic. I had just gotton off IV's the week before I went into CF clinic. Most of the time my PFT's are in the 40's and 50's. And as AnD said I will tell you guys what I do everyday for treatments.
<br />
<br />~Morning meds~
<br />Caltrate Calcum 1 tablet
<br />SourceCF A,B,D,E,and K 2 tablets
<br />Womens One a day 1 tablet
<br />Cymbalta 3 30mg tablets everyday
<br />Ibuprofen 200mg 2 tablets
<br />Prevacid 2 30mg tablets
<br />Lactulose 10mg
<br />Gycol 3350 NF powder 17 grams everyday]
<br />Mucomist 1tsp everyday
<br />Nasonex 3 sprays
<br />Nasal sline 3 sprays
<br />Atrovent 2 puffs
<br />5 Pancerecarb MS-4
<br />----------------------
<br />Then:
<br />Albuterol neb
<br />Pluozyme neb
<br />Hypertonic Saline neb
<br />Pulocourt neb
<br />Then my Vest for 20mins
<br />Tobi neb
<br />-----------------------
<br />After noon
<br />Albuterol neb
<br />vest for 15mins
<br />----------------------
<br />Night time
<br />Ibuprofen 2 tablets
<br />Azithromycin 250mg
<br />Albuterol neb
<br />Pulozyme neb
<br />pulocourt neb
<br />my vest for 20mins
<br />----------------------
<br />Wake up do is all over.
<br />Lung infections everyother 4 weeks that need IV's
<br />
<br />The bugs that I have in my lungs are:
<br /> MRSA
<br />3+ Gram positive cocci
<br />I am not sure what the other one is.
<br />
<br />
<br />
 
C

chrissyd

New member
I wish I had something amazing to say to make you feel better....I'm sending hugs your way.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
I wish I had something amazing to say to make you feel better....I'm sending hugs your way.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
I wish I had something amazing to say to make you feel better....I'm sending hugs your way.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
I wish I had something amazing to say to make you feel better....I'm sending hugs your way.

<img src="i/expressions/rose.gif" border="0">
Chrissy
 
C

chrissyd

New member
I wish I had something amazing to say to make you feel better....I'm sending hugs your way.
<br />
<br /><img src="i/expressions/rose.gif" border="0">
<br />Chrissy
 
S

Skye

New member
I am no doc, so please don't take what I say as gospel. I am just an impartial observer trying to help. What is your O2 running during the day. Do you have any idea? Have you ever had an overnight oximetry done. Desaturation at night can make you feel beat up and like you can just never get enough sleep. I know you mentioned you use it for exercise. You might consider having an overnight pulse ox done. It is very easy and you can do at home.

I also noticed, forgive me if I am wrong, it doesn't look like you are on anything like Advair. Advair saved my butt a couple of years ago. It really helped me with the inflamation and helped me get my O2 at a good level. My FEV1 went up about 10% in a little over a months time after starting it. Not everyone needs something like that, but it may be worth asking about.

I also know that they use oral Doxycycline for MRSA a lot. Have you ever tried that. Again, please don't take what I say as gospel. I am just giving you some things that I would be asking my own doc if I were in your shoes.

One last note. How are your GI issues. GERD is a CFers enemy. You can have reflux at night and not really know it which causes chest tightness and aspiration pneumonia. You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. Anyway, you might need to have what is called a PHprobe. This measures the amount of PH that is in your esophagus and tells if you are refluxing or not.

Please keep us updated, we care here<img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs,
Karen
 
S

Skye

New member
I am no doc, so please don't take what I say as gospel. I am just an impartial observer trying to help. What is your O2 running during the day. Do you have any idea? Have you ever had an overnight oximetry done. Desaturation at night can make you feel beat up and like you can just never get enough sleep. I know you mentioned you use it for exercise. You might consider having an overnight pulse ox done. It is very easy and you can do at home.

I also noticed, forgive me if I am wrong, it doesn't look like you are on anything like Advair. Advair saved my butt a couple of years ago. It really helped me with the inflamation and helped me get my O2 at a good level. My FEV1 went up about 10% in a little over a months time after starting it. Not everyone needs something like that, but it may be worth asking about.

I also know that they use oral Doxycycline for MRSA a lot. Have you ever tried that. Again, please don't take what I say as gospel. I am just giving you some things that I would be asking my own doc if I were in your shoes.

One last note. How are your GI issues. GERD is a CFers enemy. You can have reflux at night and not really know it which causes chest tightness and aspiration pneumonia. You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. Anyway, you might need to have what is called a PHprobe. This measures the amount of PH that is in your esophagus and tells if you are refluxing or not.

Please keep us updated, we care here<img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs,
Karen
 
S

Skye

New member
I am no doc, so please don't take what I say as gospel. I am just an impartial observer trying to help. What is your O2 running during the day. Do you have any idea? Have you ever had an overnight oximetry done. Desaturation at night can make you feel beat up and like you can just never get enough sleep. I know you mentioned you use it for exercise. You might consider having an overnight pulse ox done. It is very easy and you can do at home.

I also noticed, forgive me if I am wrong, it doesn't look like you are on anything like Advair. Advair saved my butt a couple of years ago. It really helped me with the inflamation and helped me get my O2 at a good level. My FEV1 went up about 10% in a little over a months time after starting it. Not everyone needs something like that, but it may be worth asking about.

I also know that they use oral Doxycycline for MRSA a lot. Have you ever tried that. Again, please don't take what I say as gospel. I am just giving you some things that I would be asking my own doc if I were in your shoes.

One last note. How are your GI issues. GERD is a CFers enemy. You can have reflux at night and not really know it which causes chest tightness and aspiration pneumonia. You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. Anyway, you might need to have what is called a PHprobe. This measures the amount of PH that is in your esophagus and tells if you are refluxing or not.

Please keep us updated, we care here<img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs,
Karen
 
S

Skye

New member
I am no doc, so please don't take what I say as gospel. I am just an impartial observer trying to help. What is your O2 running during the day. Do you have any idea? Have you ever had an overnight oximetry done. Desaturation at night can make you feel beat up and like you can just never get enough sleep. I know you mentioned you use it for exercise. You might consider having an overnight pulse ox done. It is very easy and you can do at home.

I also noticed, forgive me if I am wrong, it doesn't look like you are on anything like Advair. Advair saved my butt a couple of years ago. It really helped me with the inflamation and helped me get my O2 at a good level. My FEV1 went up about 10% in a little over a months time after starting it. Not everyone needs something like that, but it may be worth asking about.

I also know that they use oral Doxycycline for MRSA a lot. Have you ever tried that. Again, please don't take what I say as gospel. I am just giving you some things that I would be asking my own doc if I were in your shoes.

One last note. How are your GI issues. GERD is a CFers enemy. You can have reflux at night and not really know it which causes chest tightness and aspiration pneumonia. You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. Anyway, you might need to have what is called a PHprobe. This measures the amount of PH that is in your esophagus and tells if you are refluxing or not.

Please keep us updated, we care here<img src="i/expressions/face-icon-small-smile.gif" border="0">

Hugs,
Karen
 
S

Skye

New member
I am no doc, so please don't take what I say as gospel. I am just an impartial observer trying to help. What is your O2 running during the day. Do you have any idea? Have you ever had an overnight oximetry done. Desaturation at night can make you feel beat up and like you can just never get enough sleep. I know you mentioned you use it for exercise. You might consider having an overnight pulse ox done. It is very easy and you can do at home.
<br />
<br />I also noticed, forgive me if I am wrong, it doesn't look like you are on anything like Advair. Advair saved my butt a couple of years ago. It really helped me with the inflamation and helped me get my O2 at a good level. My FEV1 went up about 10% in a little over a months time after starting it. Not everyone needs something like that, but it may be worth asking about.
<br />
<br />I also know that they use oral Doxycycline for MRSA a lot. Have you ever tried that. Again, please don't take what I say as gospel. I am just giving you some things that I would be asking my own doc if I were in your shoes.
<br />
<br />One last note. How are your GI issues. GERD is a CFers enemy. You can have reflux at night and not really know it which causes chest tightness and aspiration pneumonia. You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. Anyway, you might need to have what is called a PHprobe. This measures the amount of PH that is in your esophagus and tells if you are refluxing or not.
<br />
<br />Please keep us updated, we care here<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Hugs,
<br />Karen
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote> You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. </end quote></div>


My grandmother always used to tell me to put bricks or cinderblock unde the head board so your at an angle...

It works pretty well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote> You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. </end quote></div>


My grandmother always used to tell me to put bricks or cinderblock unde the head board so your at an angle...

It works pretty well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote> You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. </end quote></div>


My grandmother always used to tell me to put bricks or cinderblock unde the head board so your at an angle...

It works pretty well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote> You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. </end quote>


My grandmother always used to tell me to put bricks or cinderblock unde the head board so your at an angle...

It works pretty well...

<img src="i/expressions/rose.gif" border="0">
 
C

chrissyd

New member
<div class="FTQUOTE"><begin quote> You can do some simple things to remedy that. Nexium and and propping the head of your bed up to make sure that what goes in your tummy stays in your tummy at night. I just put some old pillows under my mattress right where my head is and that works fine for me. You can also get wedge pillows. </end quote>
<br />
<br />
<br />My grandmother always used to tell me to put bricks or cinderblock unde the head board so your at an angle...
<br />
<br />It works pretty well...
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
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