Re: From office visit to Hospital tour

[Guest guest]

Sher

The Pflex is good for PF'ers......actually would be good for anyone. It

and the incentive spirometer are just devices to get us to breathe the

best we can. I know I had developed very bad breathing habits. I don't

do anything great on either of those but I do believe they help me.

> > > >

> > > > 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

The Pflex is good for PF'ers......actually would be good for anyone. It

and the incentive spirometer are just devices to get us to breathe the

best we can. I know I had developed very bad breathing habits. I don't

do anything great on either of those but I do believe they help me.

> > > >

> > > > 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

The Pflex is good for PF'ers......actually would be good for anyone. It

and the incentive spirometer are just devices to get us to breathe the

best we can. I know I had developed very bad breathing habits. I don't

do anything great on either of those but I do believe they help me.

> > > >

> > > > 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...I do not have an ebay acct but I will try the 800#. I haven't called yet, I was going to see if I can get a script from my dr....

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...I do not have an ebay acct but I will try the 800#. I haven't called yet, I was going to see if I can get a script from my dr....

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...I do not have an ebay acct but I will try the 800#. I haven't called yet, I was going to see if I can get a script from my dr....

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]

Thanks MB... I'm always bassakwards....

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]

Thanks MB... I'm always bassakwards....

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]

Thanks MB... I'm always bassakwards....

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]

BB...I remember back some time ago you mentioned how you hold your breath. First time I realized I DO TOO. I try to not do it since but so catch myself still...surely contributes to my sob...

I think I will try this plex exerciser.

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

Re: From office visit to Hospital tour

SherThe Pflex is good for PF'ers......actually would be good for anyone. Itand the incentive spirometer are just devices to get us to breathe thebest we can. I know I had developed very bad breathing habits. I don'tdo anything great on either of those but I do believe they help me.> > > >> > > > Last Friday night I was woken up with a sharp pain inmy chest> > (upper> > > > right lung.) These same pains went on and off over theweekend so> > I> > > > called the pulmodude Monday. They schduled myappointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistant called and changed myappointment> > 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 CTlooking 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 thehall for> > what> > > > was supposed to be a 6 minute walk. I think themedical community> > > > should consider changing the name of the so called "6minute> > walk" to> > > > be more accurate. Maybe change it to "See How Far YouCan Make> > It."> > > > Anyhow, I did the darned test and flunked! I made itdown the> > hallway> > > > only twice and MADE the nurse take my pulse & O2. O2was 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 prizefor being a> > good> > > > girl today is new oxygen equipment! I really missthose cool red> > > > baloons my pediatrician gave when I was a kid thatsaid "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

BB...I remember back some time ago you mentioned how you hold your breath. First time I realized I DO TOO. I try to not do it since but so catch myself still...surely contributes to my sob...

I think I will try this plex exerciser.

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

Re: From office visit to Hospital tour

SherThe Pflex is good for PF'ers......actually would be good for anyone. Itand the incentive spirometer are just devices to get us to breathe thebest we can. I know I had developed very bad breathing habits. I don'tdo anything great on either of those but I do believe they help me.> > > >> > > > Last Friday night I was woken up with a sharp pain inmy chest> > (upper> > > > right lung.) These same pains went on and off over theweekend so> > I> > > > called the pulmodude Monday. They schduled myappointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistant called and changed myappointment> > 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 CTlooking 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 thehall for> > what> > > > was supposed to be a 6 minute walk. I think themedical community> > > > should consider changing the name of the so called "6minute> > walk" to> > > > be more accurate. Maybe change it to "See How Far YouCan Make> > It."> > > > Anyhow, I did the darned test and flunked! I made itdown the> > hallway> > > > only twice and MADE the nurse take my pulse & O2. O2was 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 prizefor being a> > good> > > > girl today is new oxygen equipment! I really missthose cool red> > > > baloons my pediatrician gave when I was a kid thatsaid "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

BB...I remember back some time ago you mentioned how you hold your breath. First time I realized I DO TOO. I try to not do it since but so catch myself still...surely contributes to my sob...

I think I will try this plex exerciser.

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

Re: From office visit to Hospital tour

SherThe Pflex is good for PF'ers......actually would be good for anyone. Itand the incentive spirometer are just devices to get us to breathe thebest we can. I know I had developed very bad breathing habits. I don'tdo anything great on either of those but I do believe they help me.> > > >> > > > Last Friday night I was woken up with a sharp pain inmy chest> > (upper> > > > right lung.) These same pains went on and off over theweekend so> > I> > > > called the pulmodude Monday. They schduled myappointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistant called and changed myappointment> > 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 CTlooking 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 thehall for> > what> > > > was supposed to be a 6 minute walk. I think themedical community> > > > should consider changing the name of the so called "6minute> > walk" to> > > > be more accurate. Maybe change it to "See How Far YouCan Make> > It."> > > > Anyhow, I did the darned test and flunked! I made itdown the> > hallway> > > > only twice and MADE the nurse take my pulse & O2. O2was 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 prizefor being a> > good> > > > girl today is new oxygen equipment! I really missthose cool red> > > > baloons my pediatrician gave when I was a kid thatsaid "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

Sher

Here it is for $9.50 with prescription apparently required on this site.

http://www.allergysupply.com/proddetail.cfm?CFID=1597262&CFTOKEN=6806917\

6&ItemID=61&SubCatID=44

On ebay at $9.95. Takes five minutes to sign up:

http://cgi.ebay.com/Pflex-Inspiratory-Muscle-Trainer-Incentive-Exerciser\

_W0QQitemZ270319780579QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item270\

319780579&_trksid=p4634.c0.m14.l1262

I will find more....not sure why so hard to find this time.

> > > >

> > > > 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...thanks for going to this trouble...so like you!

I'll check it out later...I'm watching the inauguration.

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

Re: From office visit to Hospital tour

SherHere it is for $9.50 with prescription apparently required on this site.http://www.allergysupply.com/proddetail.cfm?CFID=1597262 & CFTOKEN=6806917\6 & ItemID=61 & SubCatID=44On ebay at $9.95. Takes five minutes to sign up:http://cgi.ebay.com/Pflex-Inspiratory-Muscle-Trainer-Incentive-Exerciser\_W0QQitemZ270319780579QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item270\319780579 & _trksid=p4634.c0.m14.l1262I will find more....not sure why so hard to find this time.> > > >> > > > Last Friday night I was woken upwith a sharp pain in my chest> > (upper> > > > right lung.) These same painswent on and off over the weekend so> > I> > > > called the pulmodude Monday.They schduled my appointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistantcalled and changed my appointment> > to> > > > 10a.m. today. So during my visitI tell the dr. EVERYTHING. I> > guess I> > > > knew to expect a long day but,WOW!> > > >> > > > He ordered bloodwork, dopler ofmy legs and chest CT looking for> > > > blood clots. After a stop atalmost every floor of the> > joint...Thank> > > > God there were NO CLOTS. Ifooled myself and "thought" I was> > about to> > > > go home. WRONG!> > > >> > > > Now he has scheduled me for anovernight sleep study, a full PFT> > and> > > > for an added treat I got to playwith the nurse in the hall for> > what> > > > was supposed to be a 6 minutewalk. I think the medical community> > > > should consider changing thename of the so called "6 minute> > walk" to> > > > be more accurate. Maybe changeit to "See How Far You Can Make> > It."> > > > Anyhow, I did the darned testand flunked! I made it down the> > hallway> > > > only twice and MADE the nursetake my pulse & O2. O2 was 84 and> > pulse> > > > 156.> > > >> > > > Well now the doc has prescribedan increase in O2. From 3 LPM on> > > > demand with exertion to 4 LPMcontinuos with exertion. Only my at> > > > home concentrator puts outcontinuous 4LPM. My prize for being a> > good> > > > girl today is new oxygenequipment! I really miss those cool red> > > > baloons my pediatrician gavewhen I was a kid that said "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

Bruce...thanks for going to this trouble...so like you!

I'll check it out later...I'm watching the inauguration.

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

Re: From office visit to Hospital tour

SherHere it is for $9.50 with prescription apparently required on this site.http://www.allergysupply.com/proddetail.cfm?CFID=1597262 & CFTOKEN=6806917\6 & ItemID=61 & SubCatID=44On ebay at $9.95. Takes five minutes to sign up:http://cgi.ebay.com/Pflex-Inspiratory-Muscle-Trainer-Incentive-Exerciser\_W0QQitemZ270319780579QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item270\319780579 & _trksid=p4634.c0.m14.l1262I will find more....not sure why so hard to find this time.> > > >> > > > Last Friday night I was woken upwith a sharp pain in my chest> > (upper> > > > right lung.) These same painswent on and off over the weekend so> > I> > > > called the pulmodude Monday.They schduled my appointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistantcalled and changed my appointment> > to> > > > 10a.m. today. So during my visitI tell the dr. EVERYTHING. I> > guess I> > > > knew to expect a long day but,WOW!> > > >> > > > He ordered bloodwork, dopler ofmy legs and chest CT looking for> > > > blood clots. After a stop atalmost every floor of the> > joint...Thank> > > > God there were NO CLOTS. Ifooled myself and "thought" I was> > about to> > > > go home. WRONG!> > > >> > > > Now he has scheduled me for anovernight sleep study, a full PFT> > and> > > > for an added treat I got to playwith the nurse in the hall for> > what> > > > was supposed to be a 6 minutewalk. I think the medical community> > > > should consider changing thename of the so called "6 minute> > walk" to> > > > be more accurate. Maybe changeit to "See How Far You Can Make> > It."> > > > Anyhow, I did the darned testand flunked! I made it down the> > hallway> > > > only twice and MADE the nursetake my pulse & O2. O2 was 84 and> > pulse> > > > 156.> > > >> > > > Well now the doc has prescribedan increase in O2. From 3 LPM on> > > > demand with exertion to 4 LPMcontinuos with exertion. Only my at> > > > home concentrator puts outcontinuous 4LPM. My prize for being a> > good> > > > girl today is new oxygenequipment! I really miss those cool red> > > > baloons my pediatrician gavewhen I was a kid that said "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

Bruce...thanks for going to this trouble...so like you!

I'll check it out later...I'm watching the inauguration.

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

Re: From office visit to Hospital tour

SherHere it is for $9.50 with prescription apparently required on this site.http://www.allergysupply.com/proddetail.cfm?CFID=1597262 & CFTOKEN=6806917\6 & ItemID=61 & SubCatID=44On ebay at $9.95. Takes five minutes to sign up:http://cgi.ebay.com/Pflex-Inspiratory-Muscle-Trainer-Incentive-Exerciser\_W0QQitemZ270319780579QQcmdZViewItemQQptZLH_DefaultDomain_0?hash=item270\319780579 & _trksid=p4634.c0.m14.l1262I will find more....not sure why so hard to find this time.> > > >> > > > Last Friday night I was woken upwith a sharp pain in my chest> > (upper> > > > right lung.) These same painswent on and off over the weekend so> > I> > > > called the pulmodude Monday.They schduled my appointment for this> > > > afternoon.> > > >> > > > Yesterday the pulmo's assistantcalled and changed my appointment> > to> > > > 10a.m. today. So during my visitI tell the dr. EVERYTHING. I> > guess I> > > > knew to expect a long day but,WOW!> > > >> > > > He ordered bloodwork, dopler ofmy legs and chest CT looking for> > > > blood clots. After a stop atalmost every floor of the> > joint...Thank> > > > God there were NO CLOTS. Ifooled myself and "thought" I was> > about to> > > > go home. WRONG!> > > >> > > > Now he has scheduled me for anovernight sleep study, a full PFT> > and> > > > for an added treat I got to playwith the nurse in the hall for> > what> > > > was supposed to be a 6 minutewalk. I think the medical community> > > > should consider changing thename of the so called "6 minute> > walk" to> > > > be more accurate. Maybe changeit to "See How Far You Can Make> > It."> > > > Anyhow, I did the darned testand flunked! I made it down the> > hallway> > > > only twice and MADE the nursetake my pulse & O2. O2 was 84 and> > pulse> > > > 156.> > > >> > > > Well now the doc has prescribedan increase in O2. From 3 LPM on> > > > demand with exertion to 4 LPMcontinuos with exertion. Only my at> > > > home concentrator puts outcontinuous 4LPM. My prize for being a> > good> > > > girl today is new oxygenequipment! I really miss those cool red> > > > baloons my pediatrician gavewhen I was a kid that said "my doctor> > > > loves me."> > > >> > >> >>

[Guest guest]

I went for my PFT today. My TLC was 54 (same as in Sept.)My DLCO was

up from 32 in Sept. to 74 now. It seems like such good news and I

think any other time I would be excited.

I guess the reason this is upsetting is because when I went to the

pulmo doc last week it was due to the piercing pain in my upper right

lung. Now I'm exhausted from the PFT and no closer to an answer. Not

to mention the pains aren't going away. Pulmo said it could be caused

pleuracy.

I thought maybe things would get better being on the 4lpm now instead

of the 3lpm previously. NO SUCH LUCK!!!

Now it's not just a piercing pain. I now have a raw burning in the

same area (kind of like the begining of bronchitis.) Has anyone else

had a similar experience or have a clue what this might be?

Thanks in advance,

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]

I always warn people not to put too much stock into any single set of

PFT's. They are a very imprecise measurement when taken singularly.

However, over time a trend is shown that is of benefit. If I took my

worse one, last February, I'd be long dead by now on the basis of its

trend. They are influenced by many factors. The reality is that our

health and condition doesn't go from 32% to 74% so one or the other or

both of those readings isn't representative of your true state. Now,

with the same reading twice, the 54% probably is more representative. I

can't even get a DLCO reading at my pulmonologist's office (have at

hospital).

As to the pain, don't stop insisting it get some concern. Until they

give you an answer that makes sense to you, it's an open and hot topic.

If it is pleurisy, then he needs to be responding. If not, he needs to

find out what it is. Pleurisy may be caused by many things, including

bacteria (pnuemonia), viruses, autoimmune diseases, infections, and

embolisms.

> > > > >

> > > > > 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 should have asked the nurse to leave the dr. a note

before I left the hospital today. I am certainly calling again

tomorrow. Even the PulmoTech mentioned that he noticed the change in

my cough and pain in my face.

If this goes on too much longer without an answer I'll have to have

my anti-depressant increased. It's really taking a toll on me

mentally and physically.

Good night

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]

Bruce, You were right!

The PFT tech called and the doc wanted me back in to redo the

diffusion. He thought 74 was just too good to be true. The new

number is 42.

I also made sure to tell the nurse about the burning in my right lung

still being there. She put me in a room and the pulmo was in with in

5 minutes.Bronchitis again & antibiotics for 10 days. I'm hoping to

sleep some of it off this weekend.

I hope you all have a great weekend and feel your best.

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]

Bruce, You were right!

The PFT tech called and the doc wanted me back in to redo the

diffusion. He thought 74 was just too good to be true. The new

number is 42.

I also made sure to tell the nurse about the burning in my right lung

still being there. She put me in a room and the pulmo was in with in

5 minutes.Bronchitis again & antibiotics for 10 days. I'm hoping to

sleep some of it off this weekend.

I hope you all have a great weekend and feel your best.

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]

Glad you got seen about the burning and got meds. If it's not completely

well as you reach the 9th and 10th days, do not let yourself go without

antibiotics and it rebuild. Get with the doctor and get more or

different. A lot of the " agains " are because we never quite beat it the

previous time.

Also, I don't know if you saw my post but much to my surprise, the

University of Miami School of Medicine is now an IPF Center of

Excellence. There were three recent additions. This does mean that it

will be using the accepted protocol and sharing with the others. This

doesn't mean that I feel different about a transplant at but it

does mean that you should be able to get otherwise some good care there.

I don't know but your doctor may be affiliated with them already in some

way.

> > > > > > >

> > > > > > > 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]

Glad you got seen about the burning and got meds. If it's not completely

well as you reach the 9th and 10th days, do not let yourself go without

antibiotics and it rebuild. Get with the doctor and get more or

different. A lot of the " agains " are because we never quite beat it the

previous time.

Also, I don't know if you saw my post but much to my surprise, the

University of Miami School of Medicine is now an IPF Center of

Excellence. There were three recent additions. This does mean that it

will be using the accepted protocol and sharing with the others. This

doesn't mean that I feel different about a transplant at but it

does mean that you should be able to get otherwise some good care there.

I don't know but your doctor may be affiliated with them already in some

way.

> > > > > > >

> > > > > > > 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]

Glad you got seen about the burning and got meds. If it's not completely

well as you reach the 9th and 10th days, do not let yourself go without

antibiotics and it rebuild. Get with the doctor and get more or

different. A lot of the " agains " are because we never quite beat it the

previous time.

Also, I don't know if you saw my post but much to my surprise, the

University of Miami School of Medicine is now an IPF Center of

Excellence. There were three recent additions. This does mean that it

will be using the accepted protocol and sharing with the others. This

doesn't mean that I feel different about a transplant at but it

does mean that you should be able to get otherwise some good care there.

I don't know but your doctor may be affiliated with them already in some

way.

> > > > > > >

> > > > > > > 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. "

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>