Re: From office visit to Hospital tour

[Guest guest]

Thanks Bruce,

I haven't done any research about only because the drive is 5

hours and I've had such a great experience at Mayo and in St.

Augustine. I'll be sure to read about it though.

My pulmonologist in St. Augustine trained at Mayo with my Pulmonary

Disease Specialist at Mayo. Their is no pull for power between the 2.

They actually speak to one another about my case. I'm very fortunate

in that regard.

They both even worked with my GYN a few years ago to decide the best

steriliztion procedure for me before I was started on Celcept and

Prednisone.

Again, Thanks

33 FL

IPF 1/06

> > > > > > > >

> > > > > > > > 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]

Thanks Bruce,

I haven't done any research about only because the drive is 5

hours and I've had such a great experience at Mayo and in St.

Augustine. I'll be sure to read about it though.

My pulmonologist in St. Augustine trained at Mayo with my Pulmonary

Disease Specialist at Mayo. Their is no pull for power between the 2.

They actually speak to one another about my case. I'm very fortunate

in that regard.

They both even worked with my GYN a few years ago to decide the best

steriliztion procedure for me before I was started on Celcept and

Prednisone.

Again, Thanks

33 FL

IPF 1/06

> > > > > > > >

> > > > > > > > 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]

Margaret, Welcome to the group! I'm sorry you are not feeling well.

The day after each PFT I start feeling like I'm getting sick. It

certainly does get things stirred up (a little too well in my

opinion!)I get tired, soreness in my chest muscles as well as pain in

my lungs. After all we are working them in a way they are not used

to.

For me it usually helps if I take an Albuterol nebulizer treatment

every morning for about 3 days afterward. Ibuprophen and Robitussin

used to help with the cough and pain. I now take Hycodan as my

disease has progressed.

I've started keeping a log of my daily pulse/ox results, temperature,

blood pressure and how i'm feeling or if anything new has happened so

that when changes happen in my " numbers " and symptoms I can give the

doctor details we sometimes forget.

I hope you feel better soon!

33 FL

IPF 1/06

> > > > > > >

> > > > > > > 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]

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

To: Breathe-Support Sent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support Date: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support Date: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support Date: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

To: Breathe-Support Sent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Margaret,

I'd just advise a teeny bit of caution when embarking on any upper body exercise. I was taught in rehab and have found it to be true that you are likely to become short of breath more quickly because you are asking your upper body muscles to do double duty. Folks like us with lung disease use our upper body muscles to get air in and out because often our diaphragms and intercostal muscles are 'worn out' something that doesn't happen to people without lung disease. When I am doing upper body exercises I just keep that in mind and slow down or stop when my arms get tired or I feel sob.

I also have to say that it's extremely odd that you say that pt's and other medical people had never heard of your large muscles getting tired when you are low on oxygen. I learned that back in high school biology and than it was reiterated in college anatomy and physiolgy classes (I was a nursing major). And after that when I was in pulmonary rehab it was one of the first things I remember being taught. Large muscles (leg, arm, back etc) need large amounts of oxygen to work efficiently.(I need ridiculous amount of O2 to be able to use the treadmill, 12 liters with a venti mask) If you are short on oxygen that's the first place you are going to feel it.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 6:13:48 AMSubject: Re: Re: From office visit to Hospital tour

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

From: sharon prendergast <ratina122003@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Margaret,

I'd just advise a teeny bit of caution when embarking on any upper body exercise. I was taught in rehab and have found it to be true that you are likely to become short of breath more quickly because you are asking your upper body muscles to do double duty. Folks like us with lung disease use our upper body muscles to get air in and out because often our diaphragms and intercostal muscles are 'worn out' something that doesn't happen to people without lung disease. When I am doing upper body exercises I just keep that in mind and slow down or stop when my arms get tired or I feel sob.

I also have to say that it's extremely odd that you say that pt's and other medical people had never heard of your large muscles getting tired when you are low on oxygen. I learned that back in high school biology and than it was reiterated in college anatomy and physiolgy classes (I was a nursing major). And after that when I was in pulmonary rehab it was one of the first things I remember being taught. Large muscles (leg, arm, back etc) need large amounts of oxygen to work efficiently.(I need ridiculous amount of O2 to be able to use the treadmill, 12 liters with a venti mask) If you are short on oxygen that's the first place you are going to feel it.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 6:13:48 AMSubject: Re: Re: From office visit to Hospital tour

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

From: sharon prendergast <ratina122003@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Margaret,

I'd just advise a teeny bit of caution when embarking on any upper body exercise. I was taught in rehab and have found it to be true that you are likely to become short of breath more quickly because you are asking your upper body muscles to do double duty. Folks like us with lung disease use our upper body muscles to get air in and out because often our diaphragms and intercostal muscles are 'worn out' something that doesn't happen to people without lung disease. When I am doing upper body exercises I just keep that in mind and slow down or stop when my arms get tired or I feel sob.

I also have to say that it's extremely odd that you say that pt's and other medical people had never heard of your large muscles getting tired when you are low on oxygen. I learned that back in high school biology and than it was reiterated in college anatomy and physiolgy classes (I was a nursing major). And after that when I was in pulmonary rehab it was one of the first things I remember being taught. Large muscles (leg, arm, back etc) need large amounts of oxygen to work efficiently.(I need ridiculous amount of O2 to be able to use the treadmill, 12 liters with a venti mask) If you are short on oxygen that's the first place you are going to feel it.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, January 25, 2009 6:13:48 AMSubject: Re: Re: From office visit to Hospital tour

Good Morning,

I have free weights and an elastic resistance band with handles that closes at the top center of a door and is held by a round ball like thing that holds it in place. I found mine at Sears of all places. These come in three different resistant strengths. I need them to replace the movement of the recumbent bike with handle grips that move in opposition to the leg peddling movement. I really need something for my upper body. I also miss the leg press at rehab. That is the main one I go to Planet Fitness for. All of the PT's and every other medical person that I have mentioned it to say that they have never heard of it before but when I start getting low on oxygen before I even feel it in my lungs, I feel it burn in the muscles of my fanny and the backs of my upper legs. It is both sides of my butt but mostly the back of my upper left leg. Go figure... I also do many exercises that do not require equipment. Many of them

are in the book they gave us in rehab. I had a desk job for years and it seems that I have always known about them. They are in magazines and were in the book they gave me for arthritis. You know, the turning your head from side to side, raising your legs, flexing your foot by pointing your toes up and down and rotating your ankle in both directions, reaching across the front of your body grasping your opposite shoulder twisting from the waist and reaching as far behind you as you can. I have a 2x4 about 2 1/2 feet long that I stand on with my toes stretching up and down by raising up on my toes and letting my heels stretch down to touch the floor below the 2x4 I am standing on.

If you would like more specifics, I could look up the reference information. I am perfectly happy to sit in one position for long periods of time. When I do need that flexibility, I realize just how tight I have allowed myself to become. I first noticed how badly I needed the little 2x4 exercise when I was reaching for something on a top shelf in the kitchen and something really popped. It really does help your overall attitude when you do even a little bit of exercise. Just keep moving!

Margaret

From: sharon prendergast <ratina122003@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, January 24, 2009 6:50:48 AMSubject: Re: Re: From office visit to Hospital tour

Hi Margaret, what type of equipment can a person buy that is similar to rehab. I have a treadmill but what others. I don't have insurance and can go for 25 a week unsupervised but my asthma inhalers are so expensive that the 25 aweek has to go toward that. sharonp asthma ph 2008

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Maybe that's why i feel like i have no strength in my arms. thanks for the explanation.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Maybe that's why i feel like i have no strength in my arms. thanks for the explanation.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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]

Maybe that's why i feel like i have no strength in my arms. thanks for the explanation.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>Subject: Re: Re: From office visit to Hospital tourTo: Breathe-Support@ yahoogroups. comDate: Saturday, January 24, 2009, 2:20 AM

Thanks Florida girl, I was born and raised there. I asked about my nebulizer and inhailer but they stir things up also. Ibuprophen gives me hives but acetaminiphen seems to work on top of my nightly ultram er. I think I would improve if I forced myself to walk on my treadmill and use the other home equipment similar to what they had at rehab. The hospital program costs $40, that is not covered, and I can't use their oxygen set at 10. I found a gym that only charges $10 a month for the two machines I don't have at home and anything else I am game to try. Again, I usually get sick even being around all the 'healthy people' there. Thanks for your response.

Margaret

From: hunnybunnybinky <brandy (AT) burnspc (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, January 23, 2009 7:18:19 PMSubject: Re: From office visit to Hospital tour

Margaret, Welcome to the group! I'm sorry you are not feeling well. The day after each PFT I start feeling like I'm getting sick. It certainly does get things stirred up (a little too well in my opinion!)I get tired, soreness in my chest muscles as well as pain in my lungs. After all we are working them in a way they are not used to. For me it usually helps if I take an Albuterol nebulizer treatment every morning for about 3 days afterward. Ibuprophen and Robitussin used to help with the cough and pain. I now take Hycodan as my disease has progressed.I've started keeping a log of my daily pulse/ox results, temperature, blood pressure and how i'm feeling or if anything new has happened so that when changes happen in my "numbers" and symptoms I can give the doctor details we sometimes forget.I hope you feel better soon! 33 FLIPF 1/06 > > > > > > >> > > > > > > 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."> > > > > > >> > > > > >> > > > >> > > >> > >> >>