Re: From office visit to Hospital tour

[Guest guest]

I'm glad to read you had some testing and an increase in O2. You'll feel better.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

From office visit to Hospital tour

Last Friday night I was woken up with a sharp pain in my chest (upper right lung.) These same pains went on and off over the weekend so I called the pulmodude Monday. They schduled my appointment for this afternoon. Yesterday the pulmo's assistant called and changed my appointment to 10a.m. today. So during my visit I tell the dr. EVERYTHING. I guess I knew to expect a long day but, WOW!He ordered bloodwork, dopler of my legs and chest CT looking for blood clots. After a stop at almost every floor of the joint...Thank God there were NO CLOTS. I fooled myself and "thought" I was about to go home. WRONG!Now he has scheduled me for an overnight sleep study, a full PFT and for an added treat I got to play with the nurse in the hall for what was supposed to be a 6 minute walk. I think the medical community should consider changing the name of the so called "6 minute walk" to be more accurate. Maybe change it to "See How Far You Can Make It." Anyhow, I did the darned test and flunked! I made it down the hallway only twice and MADE the nurse take my pulse & O2. O2 was 84 and pulse 156. Well now the doc has prescribed an increase in O2. From 3 LPM on demand with exertion to 4 LPM continuos with exertion. Only my at home concentrator puts out continuous 4LPM. My prize for being a good girl today is new oxygen equipment! I really miss those cool red baloons my pediatrician gave when I was a kid that said "my doctor loves me."

[Guest guest]

I'm glad to read you had some testing and an increase in O2. You'll feel better.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

From office visit to Hospital tour

Last Friday night I was woken up with a sharp pain in my chest (upper right lung.) These same pains went on and off over the weekend so I called the pulmodude Monday. They schduled my appointment for this afternoon. Yesterday the pulmo's assistant called and changed my appointment to 10a.m. today. So during my visit I tell the dr. EVERYTHING. I guess I knew to expect a long day but, WOW!He ordered bloodwork, dopler of my legs and chest CT looking for blood clots. After a stop at almost every floor of the joint...Thank God there were NO CLOTS. I fooled myself and "thought" I was about to go home. WRONG!Now he has scheduled me for an overnight sleep study, a full PFT and for an added treat I got to play with the nurse in the hall for what was supposed to be a 6 minute walk. I think the medical community should consider changing the name of the so called "6 minute walk" to be more accurate. Maybe change it to "See How Far You Can Make It." Anyhow, I did the darned test and flunked! I made it down the hallway only twice and MADE the nurse take my pulse & O2. O2 was 84 and pulse 156. Well now the doc has prescribed an increase in O2. From 3 LPM on demand with exertion to 4 LPM continuos with exertion. Only my at home concentrator puts out continuous 4LPM. My prize for being a good girl today is new oxygen equipment! I really miss those cool red baloons my pediatrician gave when I was a kid that said "my doctor loves me."

[Guest guest]

Been through the blood clot exams as you describe, thankfully with

similar results although they can't do a CT with contrast on me to get

the best reading.

As to the sleep study, very good to have. I've had several with

conclusion of not enough Apnea for a CPAP but definite need of oxygen at

sleep.

Now, as to your oxygen needs. It is impossible without your help for

your pulmonologist to know your oxygen needs. You must use an oximeter

at home to really get a grasp of what you need at rest versus at

different levels of exertion. Exertion is not singular. At moderate

exertion we may need one amount and higher levels we may need more. It

can not all be determined in an office setting. I suspect the difference

between your need at rest and at exertion is greater than he has

determined and that you well might need less at rest and more at

exertion still. I can go from 0 sometimes at rest to 5 on exercise. But

moderate exertion like walking around the apartment is 3.

You will need to advocate for yourself with your oxygen supplier. Figure

out exactly what you want. Get the doctor to prescribe in the way you

want. You should have a stationary home system that is adequate to cover

you at any level. You need to have portable equipment to allow you to do

anything you need. The 4 lpm continuous on exertion may be covered by 4

lpm on a pulse mode or may require 5 or pulse may not work at all for

you. However, that is highly unusual at your levels. Do not let oxygen

limit you in any way. Use it to enhance your life.

As to the six minute walk, I am not even given them off oxygen anymore.

Since my initial one at diagnosis, the only one I've had with no oxygen

was for medicare approval and I dropped below the level so quickly that

it was ended in 20 seconds. I have taken them with oxygen. I would

require 4 or 5 lpm today to do a six minute walk. Outside of the

treadmill, we don't often walk six minutes continuously.

>

> Last Friday night I was woken up with a sharp pain in my chest (upper

> right lung.) These same pains went on and off over the weekend so I

> called the pulmodude Monday. They schduled my appointment for this

> afternoon.

>

> Yesterday the pulmo's assistant called and changed my appointment to

> 10a.m. today. So during my visit I tell the dr. EVERYTHING. I guess I

> knew to expect a long day but, WOW!

>

> He ordered bloodwork, dopler of my legs and chest CT looking for

> blood clots. After a stop at almost every floor of the joint...Thank

> God there were NO CLOTS. I fooled myself and " thought " I was about to

> go home. WRONG!

>

> Now he has scheduled me for an overnight sleep study, a full PFT and

> for an added treat I got to play with the nurse in the hall for what

> was supposed to be a 6 minute walk. I think the medical community

> should consider changing the name of the so called " 6 minute walk " to

> be more accurate. Maybe change it to " See How Far You Can Make It. "

> Anyhow, I did the darned test and flunked! I made it down the hallway

> only twice and MADE the nurse take my pulse & O2. O2 was 84 and pulse

> 156.

>

> Well now the doc has prescribed an increase in O2. From 3 LPM on

> demand with exertion to 4 LPM continuos with exertion. Only my at

> home concentrator puts out continuous 4LPM. My prize for being a good

> girl today is new oxygen equipment! I really miss those cool red

> baloons my pediatrician gave when I was a kid that said " my doctor

> loves me. "

>

[Guest guest]

Been through the blood clot exams as you describe, thankfully with

similar results although they can't do a CT with contrast on me to get

the best reading.

As to the sleep study, very good to have. I've had several with

conclusion of not enough Apnea for a CPAP but definite need of oxygen at

sleep.

Now, as to your oxygen needs. It is impossible without your help for

your pulmonologist to know your oxygen needs. You must use an oximeter

at home to really get a grasp of what you need at rest versus at

different levels of exertion. Exertion is not singular. At moderate

exertion we may need one amount and higher levels we may need more. It

can not all be determined in an office setting. I suspect the difference

between your need at rest and at exertion is greater than he has

determined and that you well might need less at rest and more at

exertion still. I can go from 0 sometimes at rest to 5 on exercise. But

moderate exertion like walking around the apartment is 3.

You will need to advocate for yourself with your oxygen supplier. Figure

out exactly what you want. Get the doctor to prescribe in the way you

want. You should have a stationary home system that is adequate to cover

you at any level. You need to have portable equipment to allow you to do

anything you need. The 4 lpm continuous on exertion may be covered by 4

lpm on a pulse mode or may require 5 or pulse may not work at all for

you. However, that is highly unusual at your levels. Do not let oxygen

limit you in any way. Use it to enhance your life.

As to the six minute walk, I am not even given them off oxygen anymore.

Since my initial one at diagnosis, the only one I've had with no oxygen

was for medicare approval and I dropped below the level so quickly that

it was ended in 20 seconds. I have taken them with oxygen. I would

require 4 or 5 lpm today to do a six minute walk. Outside of the

treadmill, we don't often walk six minutes continuously.

>

> Last Friday night I was woken up with a sharp pain in my chest (upper

> right lung.) These same pains went on and off over the weekend so I

> called the pulmodude Monday. They schduled my appointment for this

> afternoon.

>

> Yesterday the pulmo's assistant called and changed my appointment to

> 10a.m. today. So during my visit I tell the dr. EVERYTHING. I guess I

> knew to expect a long day but, WOW!

>

> He ordered bloodwork, dopler of my legs and chest CT looking for

> blood clots. After a stop at almost every floor of the joint...Thank

> God there were NO CLOTS. I fooled myself and " thought " I was about to

> go home. WRONG!

>

> Now he has scheduled me for an overnight sleep study, a full PFT and

> for an added treat I got to play with the nurse in the hall for what

> was supposed to be a 6 minute walk. I think the medical community

> should consider changing the name of the so called " 6 minute walk " to

> be more accurate. Maybe change it to " See How Far You Can Make It. "

> Anyhow, I did the darned test and flunked! I made it down the hallway

> only twice and MADE the nurse take my pulse & O2. O2 was 84 and pulse

> 156.

>

> Well now the doc has prescribed an increase in O2. From 3 LPM on

> demand with exertion to 4 LPM continuos with exertion. Only my at

> home concentrator puts out continuous 4LPM. My prize for being a good

> girl today is new oxygen equipment! I really miss those cool red

> baloons my pediatrician gave when I was a kid that said " my doctor

> loves me. "

>

[Guest guest]

Been through the blood clot exams as you describe, thankfully with

similar results although they can't do a CT with contrast on me to get

the best reading.

As to the sleep study, very good to have. I've had several with

conclusion of not enough Apnea for a CPAP but definite need of oxygen at

sleep.

Now, as to your oxygen needs. It is impossible without your help for

your pulmonologist to know your oxygen needs. You must use an oximeter

at home to really get a grasp of what you need at rest versus at

different levels of exertion. Exertion is not singular. At moderate

exertion we may need one amount and higher levels we may need more. It

can not all be determined in an office setting. I suspect the difference

between your need at rest and at exertion is greater than he has

determined and that you well might need less at rest and more at

exertion still. I can go from 0 sometimes at rest to 5 on exercise. But

moderate exertion like walking around the apartment is 3.

You will need to advocate for yourself with your oxygen supplier. Figure

out exactly what you want. Get the doctor to prescribe in the way you

want. You should have a stationary home system that is adequate to cover

you at any level. You need to have portable equipment to allow you to do

anything you need. The 4 lpm continuous on exertion may be covered by 4

lpm on a pulse mode or may require 5 or pulse may not work at all for

you. However, that is highly unusual at your levels. Do not let oxygen

limit you in any way. Use it to enhance your life.

As to the six minute walk, I am not even given them off oxygen anymore.

Since my initial one at diagnosis, the only one I've had with no oxygen

was for medicare approval and I dropped below the level so quickly that

it was ended in 20 seconds. I have taken them with oxygen. I would

require 4 or 5 lpm today to do a six minute walk. Outside of the

treadmill, we don't often walk six minutes continuously.

>

> Last Friday night I was woken up with a sharp pain in my chest (upper

> right lung.) These same pains went on and off over the weekend so I

> called the pulmodude Monday. They schduled my appointment for this

> afternoon.

>

> Yesterday the pulmo's assistant called and changed my appointment to

> 10a.m. today. So during my visit I tell the dr. EVERYTHING. I guess I

> knew to expect a long day but, WOW!

>

> He ordered bloodwork, dopler of my legs and chest CT looking for

> blood clots. After a stop at almost every floor of the joint...Thank

> God there were NO CLOTS. I fooled myself and " thought " I was about to

> go home. WRONG!

>

> Now he has scheduled me for an overnight sleep study, a full PFT and

> for an added treat I got to play with the nurse in the hall for what

> was supposed to be a 6 minute walk. I think the medical community

> should consider changing the name of the so called " 6 minute walk " to

> be more accurate. Maybe change it to " See How Far You Can Make It. "

> Anyhow, I did the darned test and flunked! I made it down the hallway

> only twice and MADE the nurse take my pulse & O2. O2 was 84 and pulse

> 156.

>

> Well now the doc has prescribed an increase in O2. From 3 LPM on

> demand with exertion to 4 LPM continuos with exertion. Only my at

> home concentrator puts out continuous 4LPM. My prize for being a good

> girl today is new oxygen equipment! I really miss those cool red

> baloons my pediatrician gave when I was a kid that said " my doctor

> loves me. "

>

[Guest guest]

Bruce,

I use an oximeter at home. I've learned at home even while on oxygen

to take it slow and 3 to 4 lpm has worked. I keep detailed notes for

the dr. of SATS, heart rate, blood pressure and symptoms.

At rest my O2 needs are 0. And I fluctuate while i'm cleaning or out

shopping. I'm pretty active as I still do the grocery shopping,

laundry, driving, etc. I even go to the mall with friends. I just

take it slow.

Previously my O2 supplier had said they didn't have liquid oxygen.

Today I called and spoke with someone more informed. All i have to do

is ask the the dr. to write the rx and letter of necessity for the

equipment I want and they will deliver it.

With the 6 min. walk I was using their tank on continuous 3lpm during

the walk.I haven't done a 6 minute walk without oxygen in over a

year.

Right now my concern is still my chest pains. No matter if I am on or

off oxygen I'm still having pains in my right lung. Not understanding

what's happening with that is quite scary.

33 FL

IPF 01/06

> >

> > Last Friday night I was woken up with a sharp pain in my chest

(upper

> > right lung.) These same pains went on and off over the weekend so

I

> > called the pulmodude Monday. They schduled my appointment for this

> > afternoon.

> >

> > Yesterday the pulmo's assistant called and changed my appointment

to

> > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

guess I

> > knew to expect a long day but, WOW!

> >

> > He ordered bloodwork, dopler of my legs and chest CT looking for

> > blood clots. After a stop at almost every floor of the

joint...Thank

> > God there were NO CLOTS. I fooled myself and " thought " I was

about to

> > go home. WRONG!

> >

> > Now he has scheduled me for an overnight sleep study, a full PFT

and

> > for an added treat I got to play with the nurse in the hall for

what

> > was supposed to be a 6 minute walk. I think the medical community

> > should consider changing the name of the so called " 6 minute

walk " to

> > be more accurate. Maybe change it to " See How Far You Can Make

It. "

> > Anyhow, I did the darned test and flunked! I made it down the

hallway

> > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

pulse

> > 156.

> >

> > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > demand with exertion to 4 LPM continuos with exertion. Only my at

> > home concentrator puts out continuous 4LPM. My prize for being a

good

> > girl today is new oxygen equipment! I really miss those cool red

> > baloons my pediatrician gave when I was a kid that said " my doctor

> > loves me. "

> >

>

[Guest guest]

Bruce,

I use an oximeter at home. I've learned at home even while on oxygen

to take it slow and 3 to 4 lpm has worked. I keep detailed notes for

the dr. of SATS, heart rate, blood pressure and symptoms.

At rest my O2 needs are 0. And I fluctuate while i'm cleaning or out

shopping. I'm pretty active as I still do the grocery shopping,

laundry, driving, etc. I even go to the mall with friends. I just

take it slow.

Previously my O2 supplier had said they didn't have liquid oxygen.

Today I called and spoke with someone more informed. All i have to do

is ask the the dr. to write the rx and letter of necessity for the

equipment I want and they will deliver it.

With the 6 min. walk I was using their tank on continuous 3lpm during

the walk.I haven't done a 6 minute walk without oxygen in over a

year.

Right now my concern is still my chest pains. No matter if I am on or

off oxygen I'm still having pains in my right lung. Not understanding

what's happening with that is quite scary.

33 FL

IPF 01/06

> >

> > Last Friday night I was woken up with a sharp pain in my chest

(upper

> > right lung.) These same pains went on and off over the weekend so

I

> > called the pulmodude Monday. They schduled my appointment for this

> > afternoon.

> >

> > Yesterday the pulmo's assistant called and changed my appointment

to

> > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

guess I

> > knew to expect a long day but, WOW!

> >

> > He ordered bloodwork, dopler of my legs and chest CT looking for

> > blood clots. After a stop at almost every floor of the

joint...Thank

> > God there were NO CLOTS. I fooled myself and " thought " I was

about to

> > go home. WRONG!

> >

> > Now he has scheduled me for an overnight sleep study, a full PFT

and

> > for an added treat I got to play with the nurse in the hall for

what

> > was supposed to be a 6 minute walk. I think the medical community

> > should consider changing the name of the so called " 6 minute

walk " to

> > be more accurate. Maybe change it to " See How Far You Can Make

It. "

> > Anyhow, I did the darned test and flunked! I made it down the

hallway

> > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

pulse

> > 156.

> >

> > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > demand with exertion to 4 LPM continuos with exertion. Only my at

> > home concentrator puts out continuous 4LPM. My prize for being a

good

> > girl today is new oxygen equipment! I really miss those cool red

> > baloons my pediatrician gave when I was a kid that said " my doctor

> > loves me. "

> >

>

[Guest guest]

Bruce,

I use an oximeter at home. I've learned at home even while on oxygen

to take it slow and 3 to 4 lpm has worked. I keep detailed notes for

the dr. of SATS, heart rate, blood pressure and symptoms.

At rest my O2 needs are 0. And I fluctuate while i'm cleaning or out

shopping. I'm pretty active as I still do the grocery shopping,

laundry, driving, etc. I even go to the mall with friends. I just

take it slow.

Previously my O2 supplier had said they didn't have liquid oxygen.

Today I called and spoke with someone more informed. All i have to do

is ask the the dr. to write the rx and letter of necessity for the

equipment I want and they will deliver it.

With the 6 min. walk I was using their tank on continuous 3lpm during

the walk.I haven't done a 6 minute walk without oxygen in over a

year.

Right now my concern is still my chest pains. No matter if I am on or

off oxygen I'm still having pains in my right lung. Not understanding

what's happening with that is quite scary.

33 FL

IPF 01/06

> >

> > Last Friday night I was woken up with a sharp pain in my chest

(upper

> > right lung.) These same pains went on and off over the weekend so

I

> > called the pulmodude Monday. They schduled my appointment for this

> > afternoon.

> >

> > Yesterday the pulmo's assistant called and changed my appointment

to

> > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

guess I

> > knew to expect a long day but, WOW!

> >

> > He ordered bloodwork, dopler of my legs and chest CT looking for

> > blood clots. After a stop at almost every floor of the

joint...Thank

> > God there were NO CLOTS. I fooled myself and " thought " I was

about to

> > go home. WRONG!

> >

> > Now he has scheduled me for an overnight sleep study, a full PFT

and

> > for an added treat I got to play with the nurse in the hall for

what

> > was supposed to be a 6 minute walk. I think the medical community

> > should consider changing the name of the so called " 6 minute

walk " to

> > be more accurate. Maybe change it to " See How Far You Can Make

It. "

> > Anyhow, I did the darned test and flunked! I made it down the

hallway

> > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

pulse

> > 156.

> >

> > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > demand with exertion to 4 LPM continuos with exertion. Only my at

> > home concentrator puts out continuous 4LPM. My prize for being a

good

> > girl today is new oxygen equipment! I really miss those cool red

> > baloons my pediatrician gave when I was a kid that said " my doctor

> > loves me. "

> >

>

[Guest guest]

That's great. Yes, it's amazing what the oxygen suppliers will try not

to provide. I've heard them say there were no concentrators over 6 lpm,

say medicare wouldn't pay for liquid, try to change doctor's

prescriptions, say there were no portables over 10 lpm and many more

things. Glad you pushed for what you want and need. My prescription is

written even with the detail of the specific portable equipment.

You seem well in control of your situation. Glad to see another person

advocating for themselves.

> > >

> > > Last Friday night I was woken up with a sharp pain in my chest

> (upper

> > > right lung.) These same pains went on and off over the weekend so

> I

> > > called the pulmodude Monday. They schduled my appointment for this

> > > afternoon.

> > >

> > > Yesterday the pulmo's assistant called and changed my appointment

> to

> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> guess I

> > > knew to expect a long day but, WOW!

> > >

> > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > blood clots. After a stop at almost every floor of the

> joint...Thank

> > > God there were NO CLOTS. I fooled myself and " thought " I was

> about to

> > > go home. WRONG!

> > >

> > > Now he has scheduled me for an overnight sleep study, a full PFT

> and

> > > for an added treat I got to play with the nurse in the hall for

> what

> > > was supposed to be a 6 minute walk. I think the medical community

> > > should consider changing the name of the so called " 6 minute

> walk " to

> > > be more accurate. Maybe change it to " See How Far You Can Make

> It. "

> > > Anyhow, I did the darned test and flunked! I made it down the

> hallway

> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> pulse

> > > 156.

> > >

> > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > demand with exertion to 4 LPM continuos with exertion. Only my at

> > > home concentrator puts out continuous 4LPM. My prize for being a

> good

> > > girl today is new oxygen equipment! I really miss those cool red

> > > baloons my pediatrician gave when I was a kid that said " my doctor

> > > loves me. "

> > >

> >

>

[Guest guest]

That's great. Yes, it's amazing what the oxygen suppliers will try not

to provide. I've heard them say there were no concentrators over 6 lpm,

say medicare wouldn't pay for liquid, try to change doctor's

prescriptions, say there were no portables over 10 lpm and many more

things. Glad you pushed for what you want and need. My prescription is

written even with the detail of the specific portable equipment.

You seem well in control of your situation. Glad to see another person

advocating for themselves.

> > >

> > > Last Friday night I was woken up with a sharp pain in my chest

> (upper

> > > right lung.) These same pains went on and off over the weekend so

> I

> > > called the pulmodude Monday. They schduled my appointment for this

> > > afternoon.

> > >

> > > Yesterday the pulmo's assistant called and changed my appointment

> to

> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> guess I

> > > knew to expect a long day but, WOW!

> > >

> > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > blood clots. After a stop at almost every floor of the

> joint...Thank

> > > God there were NO CLOTS. I fooled myself and " thought " I was

> about to

> > > go home. WRONG!

> > >

> > > Now he has scheduled me for an overnight sleep study, a full PFT

> and

> > > for an added treat I got to play with the nurse in the hall for

> what

> > > was supposed to be a 6 minute walk. I think the medical community

> > > should consider changing the name of the so called " 6 minute

> walk " to

> > > be more accurate. Maybe change it to " See How Far You Can Make

> It. "

> > > Anyhow, I did the darned test and flunked! I made it down the

> hallway

> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> pulse

> > > 156.

> > >

> > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > demand with exertion to 4 LPM continuos with exertion. Only my at

> > > home concentrator puts out continuous 4LPM. My prize for being a

> good

> > > girl today is new oxygen equipment! I really miss those cool red

> > > baloons my pediatrician gave when I was a kid that said " my doctor

> > > loves me. "

> > >

> >

>

[Guest guest]

That's great. Yes, it's amazing what the oxygen suppliers will try not

to provide. I've heard them say there were no concentrators over 6 lpm,

say medicare wouldn't pay for liquid, try to change doctor's

prescriptions, say there were no portables over 10 lpm and many more

things. Glad you pushed for what you want and need. My prescription is

written even with the detail of the specific portable equipment.

You seem well in control of your situation. Glad to see another person

advocating for themselves.

> > >

> > > Last Friday night I was woken up with a sharp pain in my chest

> (upper

> > > right lung.) These same pains went on and off over the weekend so

> I

> > > called the pulmodude Monday. They schduled my appointment for this

> > > afternoon.

> > >

> > > Yesterday the pulmo's assistant called and changed my appointment

> to

> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> guess I

> > > knew to expect a long day but, WOW!

> > >

> > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > blood clots. After a stop at almost every floor of the

> joint...Thank

> > > God there were NO CLOTS. I fooled myself and " thought " I was

> about to

> > > go home. WRONG!

> > >

> > > Now he has scheduled me for an overnight sleep study, a full PFT

> and

> > > for an added treat I got to play with the nurse in the hall for

> what

> > > was supposed to be a 6 minute walk. I think the medical community

> > > should consider changing the name of the so called " 6 minute

> walk " to

> > > be more accurate. Maybe change it to " See How Far You Can Make

> It. "

> > > Anyhow, I did the darned test and flunked! I made it down the

> hallway

> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> pulse

> > > 156.

> > >

> > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > demand with exertion to 4 LPM continuos with exertion. Only my at

> > > home concentrator puts out continuous 4LPM. My prize for being a

> good

> > > girl today is new oxygen equipment! I really miss those cool red

> > > baloons my pediatrician gave when I was a kid that said " my doctor

> > > loves me. "

> > >

> >

>

[Guest guest]

Hi Bruce, first let me say without you i would be in a looney bin, you are a wealth of kindness and helpfulness. next i finally remembered where you told me to go for the pflex imt. It was on ebay. Sher, i don't know what the 800 # i gave you did, but go to ebay and then to roses home medical specialtys. they have two different types. I got the pflex one. Bruce is there a difference between the incentive spirometer and a deep breathing excerciser. They have both listed. I have a incentive called airlfe and am wondering if thats enough? Also since i do not have insurance respitory rehab is out but you can go and they just do not monitor you for 25 a week. my question is i have a treadmill and the pflex and incentive spirometer that I use everyday. I also am looking to get a bike if you can suggest one.I have three asthma inhalers that i have to use so that 25

dollars could go toward the 600 i pay a month. The doc says just pace my self at home and watch my o2 which i do.can i do anything else since iam sort of on my own without insurance.Oh i also got this thing called a flutter which is a pep therapy and if any one has asthma or a copd i highly recomend this. the mucous i have been clearing by breathing out is really helping and i seem to exhale more air when i breathe. Sorry this post is long but i feel to good to be true and noone else seems to understand me. sharon p asthma ph 2008

Subject: Re: From office visit to Hospital tourTo: Breathe-Support Date: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a

long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the

nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Hi Bruce, first let me say without you i would be in a looney bin, you are a wealth of kindness and helpfulness. next i finally remembered where you told me to go for the pflex imt. It was on ebay. Sher, i don't know what the 800 # i gave you did, but go to ebay and then to roses home medical specialtys. they have two different types. I got the pflex one. Bruce is there a difference between the incentive spirometer and a deep breathing excerciser. They have both listed. I have a incentive called airlfe and am wondering if thats enough? Also since i do not have insurance respitory rehab is out but you can go and they just do not monitor you for 25 a week. my question is i have a treadmill and the pflex and incentive spirometer that I use everyday. I also am looking to get a bike if you can suggest one.I have three asthma inhalers that i have to use so that 25

dollars could go toward the 600 i pay a month. The doc says just pace my self at home and watch my o2 which i do.can i do anything else since iam sort of on my own without insurance.Oh i also got this thing called a flutter which is a pep therapy and if any one has asthma or a copd i highly recomend this. the mucous i have been clearing by breathing out is really helping and i seem to exhale more air when i breathe. Sorry this post is long but i feel to good to be true and noone else seems to understand me. sharon p asthma ph 2008

Subject: Re: From office visit to Hospital tourTo: Breathe-Support Date: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a

long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the

nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Hi Bruce, first let me say without you i would be in a looney bin, you are a wealth of kindness and helpfulness. next i finally remembered where you told me to go for the pflex imt. It was on ebay. Sher, i don't know what the 800 # i gave you did, but go to ebay and then to roses home medical specialtys. they have two different types. I got the pflex one. Bruce is there a difference between the incentive spirometer and a deep breathing excerciser. They have both listed. I have a incentive called airlfe and am wondering if thats enough? Also since i do not have insurance respitory rehab is out but you can go and they just do not monitor you for 25 a week. my question is i have a treadmill and the pflex and incentive spirometer that I use everyday. I also am looking to get a bike if you can suggest one.I have three asthma inhalers that i have to use so that 25

dollars could go toward the 600 i pay a month. The doc says just pace my self at home and watch my o2 which i do.can i do anything else since iam sort of on my own without insurance.Oh i also got this thing called a flutter which is a pep therapy and if any one has asthma or a copd i highly recomend this. the mucous i have been clearing by breathing out is really helping and i seem to exhale more air when i breathe. Sorry this post is long but i feel to good to be true and noone else seems to understand me. sharon p asthma ph 2008

Subject: Re: From office visit to Hospital tourTo: Breathe-Support Date: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a

long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the

nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sharon...thanks, I will follow your suggestions.

I'm wondering...since COPD breaths differently than PF, is this good for the PF ?

I was told at rehab that CODA pts (patients) can't breathe in and PF can't breathe out (easily). Or is it the other way around???

If the pflex helps w/ breathing maybe it doesn't matter!

Thanks Sharon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: From office visit to Hospital tourTo: Breathe-Support Date: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sharon...thanks, I will follow your suggestions.

I'm wondering...since COPD breaths differently than PF, is this good for the PF ?

I was told at rehab that CODA pts (patients) can't breathe in and PF can't breathe out (easily). Or is it the other way around???

If the pflex helps w/ breathing maybe it doesn't matter!

Thanks Sharon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: From office visit to Hospital tourTo: Breathe-Support Date: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots. After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sher anything to help. Bruce i am sure can answer that question. Is Bruce our version of Doc. House? sharonp asthma ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sher anything to help. Bruce i am sure can answer that question. Is Bruce our version of Doc. House? sharonp asthma ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

sher , if you want to give the pflex a try and you do not have a ebay account they are only 17.00 and i would gladly buy you one and have it sent to you. My belief is is that I was put here for a reason and helping is one of those. sharon p asthma and ph 2008

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sher,

It is the other way around. lol Fibrosis is restrictive and we have trouble breathing in deeply. COPD (and emphysema and asthma) are obstructive and those folks have difficulty exhaling fully. Those who have both obviously have the most trouble and have a really hard time keeping their oxygen and carbon dioxide levels at a safe balance.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, January 16, 2009 5:48:29 PMSubject: Re: Re: From office visit to Hospital tour

Sharon...thanks, I will follow your suggestions.

I'm wondering... since COPD breaths differently than PF, is this good for the PF ?

I was told at rehab that CODA pts (patients) can't breathe in and PF can't breathe out (easily). Or is it the other way around???

If the pflex helps w/ breathing maybe it doesn't matter!

Thanks Sharon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sher,

It is the other way around. lol Fibrosis is restrictive and we have trouble breathing in deeply. COPD (and emphysema and asthma) are obstructive and those folks have difficulty exhaling fully. Those who have both obviously have the most trouble and have a really hard time keeping their oxygen and carbon dioxide levels at a safe balance.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, January 16, 2009 5:48:29 PMSubject: Re: Re: From office visit to Hospital tour

Sharon...thanks, I will follow your suggestions.

I'm wondering... since COPD breaths differently than PF, is this good for the PF ?

I was told at rehab that CODA pts (patients) can't breathe in and PF can't breathe out (easily). Or is it the other way around???

If the pflex helps w/ breathing maybe it doesn't matter!

Thanks Sharon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sher,

It is the other way around. lol Fibrosis is restrictive and we have trouble breathing in deeply. COPD (and emphysema and asthma) are obstructive and those folks have difficulty exhaling fully. Those who have both obviously have the most trouble and have a really hard time keeping their oxygen and carbon dioxide levels at a safe balance.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, January 16, 2009 5:48:29 PMSubject: Re: Re: From office visit to Hospital tour

Sharon...thanks, I will follow your suggestions.

I'm wondering... since COPD breaths differently than PF, is this good for the PF ?

I was told at rehab that CODA pts (patients) can't breathe in and PF can't breathe out (easily). Or is it the other way around???

If the pflex helps w/ breathing maybe it doesn't matter!

Thanks Sharon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Friday, January 16, 2009, 3:05 PM

That's great. Yes, it's amazing what the oxygen suppliers will try notto provide. I've heard them say there were no concentrators over 6 lpm,say medicare wouldn't pay for liquid, try to change doctor'sprescriptions, say there were no portables over 10 lpm and many morethings. Glad you pushed for what you want and need. My prescription iswritten even with the detail of the specific portable equipment.You seem well in control of your situation. Glad to see another personadvocating for themselves.> > >> > > Last Friday night I was woken up with a sharp pain in my chest> (upper> > > right lung.) These same pains went on and off over the weekend so> I> > > called the pulmodude Monday. They schduled my appointment for this> > > afternoon.> > >> > > Yesterday the pulmo's assistant called and changed my appointment> to> > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I> guess I> > > knew to expect a long day but, WOW!> > >> > > He ordered bloodwork, dopler of my legs and chest CT looking for> > > blood clots.

After a stop at almost every floor of the> joint...Thank> > > God there were NO CLOTS. I fooled myself and "thought" I was> about to> > > go home. WRONG!> > >> > > Now he has scheduled me for an overnight sleep study, a full PFT> and> > > for an added treat I got to play with the nurse in the hall for> what> > > was supposed to be a 6 minute walk. I think the medical community> > > should consider changing the name of the so called "6 minute> walk" to> > > be more accurate. Maybe change it to "See How Far You Can Make> It."> > > Anyhow, I did the darned test and flunked! I made it down the> hallway> > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and> pulse> > > 156.> > >> > > Well now the doc has prescribed an

increase in O2. From 3 LPM on> > > demand with exertion to 4 LPM continuos with exertion. Only my at> > > home concentrator puts out continuous 4LPM. My prize for being a> good> > > girl today is new oxygen equipment! I really miss those cool red> > > baloons my pediatrician gave when I was a kid that said "my doctor> > > loves me."> > >> >>

[Guest guest]

Sharon

Yes, the incentive spirometer and the muscle exerciser are two different

items. One thing you could do if affordable is just a trip or two to

rehab to get them to outline a program for you.

The typical program consists of breathing exercises (spirometer, muscle

exerciser, and just sitting), of aerobic exercises such as the

treadmill, and of some form of light muscle exercises for the arms and

legs (light weights).

All of these can be done at home. It's just a matter of watching your

saturation and doing enough exercising but not too much.

> > > >

> > > > Last Friday night I was woken up with a sharp pain in my chest

> > (upper

> > > > right lung.) These same pains went on and off over the weekend

so

> > I

> > > > called the pulmodude Monday. They schduled my appointment for

this

> > > > afternoon.

> > > >

> > > > Yesterday the pulmo's assistant called and changed my

appointment

> > to

> > > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> > guess I

> > > > knew to expect a long day but, WOW!

> > > >

> > > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > > blood clots. After a stop at almost every floor of the

> > joint...Thank

> > > > God there were NO CLOTS. I fooled myself and " thought " I was

> > about to

> > > > go home. WRONG!

> > > >

> > > > Now he has scheduled me for an overnight sleep study, a full PFT

> > and

> > > > for an added treat I got to play with the nurse in the hall for

> > what

> > > > was supposed to be a 6 minute walk. I think the medical

community

> > > > should consider changing the name of the so called " 6 minute

> > walk " to

> > > > be more accurate. Maybe change it to " See How Far You Can Make

> > It. "

> > > > Anyhow, I did the darned test and flunked! I made it down the

> > hallway

> > > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> > pulse

> > > > 156.

> > > >

> > > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > > demand with exertion to 4 LPM continuos with exertion. Only my

at

> > > > home concentrator puts out continuous 4LPM. My prize for being a

> > good

> > > > girl today is new oxygen equipment! I really miss those cool red

> > > > baloons my pediatrician gave when I was a kid that said " my

doctor

> > > > loves me. "

> > > >

> > >

> >

>

[Guest guest]

Sharon

Yes, the incentive spirometer and the muscle exerciser are two different

items. One thing you could do if affordable is just a trip or two to

rehab to get them to outline a program for you.

The typical program consists of breathing exercises (spirometer, muscle

exerciser, and just sitting), of aerobic exercises such as the

treadmill, and of some form of light muscle exercises for the arms and

legs (light weights).

All of these can be done at home. It's just a matter of watching your

saturation and doing enough exercising but not too much.

> > > >

> > > > Last Friday night I was woken up with a sharp pain in my chest

> > (upper

> > > > right lung.) These same pains went on and off over the weekend

so

> > I

> > > > called the pulmodude Monday. They schduled my appointment for

this

> > > > afternoon.

> > > >

> > > > Yesterday the pulmo's assistant called and changed my

appointment

> > to

> > > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> > guess I

> > > > knew to expect a long day but, WOW!

> > > >

> > > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > > blood clots. After a stop at almost every floor of the

> > joint...Thank

> > > > God there were NO CLOTS. I fooled myself and " thought " I was

> > about to

> > > > go home. WRONG!

> > > >

> > > > Now he has scheduled me for an overnight sleep study, a full PFT

> > and

> > > > for an added treat I got to play with the nurse in the hall for

> > what

> > > > was supposed to be a 6 minute walk. I think the medical

community

> > > > should consider changing the name of the so called " 6 minute

> > walk " to

> > > > be more accurate. Maybe change it to " See How Far You Can Make

> > It. "

> > > > Anyhow, I did the darned test and flunked! I made it down the

> > hallway

> > > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> > pulse

> > > > 156.

> > > >

> > > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > > demand with exertion to 4 LPM continuos with exertion. Only my

at

> > > > home concentrator puts out continuous 4LPM. My prize for being a

> > good

> > > > girl today is new oxygen equipment! I really miss those cool red

> > > > baloons my pediatrician gave when I was a kid that said " my

doctor

> > > > loves me. "

> > > >

> > >

> >

>

[Guest guest]

Sharon

Yes, the incentive spirometer and the muscle exerciser are two different

items. One thing you could do if affordable is just a trip or two to

rehab to get them to outline a program for you.

The typical program consists of breathing exercises (spirometer, muscle

exerciser, and just sitting), of aerobic exercises such as the

treadmill, and of some form of light muscle exercises for the arms and

legs (light weights).

All of these can be done at home. It's just a matter of watching your

saturation and doing enough exercising but not too much.

> > > >

> > > > Last Friday night I was woken up with a sharp pain in my chest

> > (upper

> > > > right lung.) These same pains went on and off over the weekend

so

> > I

> > > > called the pulmodude Monday. They schduled my appointment for

this

> > > > afternoon.

> > > >

> > > > Yesterday the pulmo's assistant called and changed my

appointment

> > to

> > > > 10a.m. today. So during my visit I tell the dr. EVERYTHING. I

> > guess I

> > > > knew to expect a long day but, WOW!

> > > >

> > > > He ordered bloodwork, dopler of my legs and chest CT looking for

> > > > blood clots. After a stop at almost every floor of the

> > joint...Thank

> > > > God there were NO CLOTS. I fooled myself and " thought " I was

> > about to

> > > > go home. WRONG!

> > > >

> > > > Now he has scheduled me for an overnight sleep study, a full PFT

> > and

> > > > for an added treat I got to play with the nurse in the hall for

> > what

> > > > was supposed to be a 6 minute walk. I think the medical

community

> > > > should consider changing the name of the so called " 6 minute

> > walk " to

> > > > be more accurate. Maybe change it to " See How Far You Can Make

> > It. "

> > > > Anyhow, I did the darned test and flunked! I made it down the

> > hallway

> > > > only twice and MADE the nurse take my pulse & O2. O2 was 84 and

> > pulse

> > > > 156.

> > > >

> > > > Well now the doc has prescribed an increase in O2. From 3 LPM on

> > > > demand with exertion to 4 LPM continuos with exertion. Only my

at

> > > > home concentrator puts out continuous 4LPM. My prize for being a

> > good

> > > > girl today is new oxygen equipment! I really miss those cool red

> > > > baloons my pediatrician gave when I was a kid that said " my

doctor

> > > > loves me. "

> > > >

> > >

> >

>