Ranting about Drs office visits

September 8, 2007

Had my second appointment last month with

the pulmo Dr. I was so impressed the first visit.

This time I saw a nurse practitioner (

after waiting an hour) who gave me a web site to a Dr. in Mexico who gives

blue shark injections that miraculously cure you .I couldn’t believe it.

I looked it up. They put you up in a

hotel on USA side and bus

you across to Tijuana

for treatment. $800.00 an injection.

Dr came in and spent two minutes saying “Come

in 6 months for PFTs and MRI.

It is so depressing. He never even checked

my lungs .I asked him about the loss of sense of smell. He said he didn’t

cover that go to an ear nose and throat dr.

Fortunately I have antibiotics on hand so

was able to self medicate as I had a nasty infection.

I am going to stay as healthy as possible

to avoid the Drs.

Go twice a year for the testing.

They can’t do anything for this disease

unless they come up with a cure to restore lung function.

He also refused to sign a do not resuscitate

form I had printed from the Internet. Another bridge to cross. Looked up the

Hemlock Society and they don’t tell you a thing. They don’t even

have the same name anymore.

Bah! Humbug!

Florida P.F.04/06

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of scruffyscruffier123

Sent: Saturday, September 08, 2007

1:27 PM

To: Breathe-Support

Subject: Re:

T

Hi Joyce & ,

Usually, if I call a dr's office and have to explain things which

would take 2 minutes and secretary doesn't understand and it takes me

20 minutes and still doesn't understand what the heck I'm talking

about I just tell her give me your fax# and I'll fax over the message

and give it to the dr.

I don't know about the US,

here dr's expect you to do what they say,

and you have no say about your care! Which is totally wrong, because

you know your body more than anyone else.

The first gut feeling I get, that something isn't right in my

treatments I totally speak out! and most of the times it gets me in

trouble! I completetly understand about the short fuse!

Irene

PF 03/07

Raynaud's Disease 09/07

Canada

> > > Hey Irene,

> > > I am so sry to hear about the Raynaud's. I have a friend with

this

> > issue, and she has problems withher extremities turning blue if

she

> > sits still for very lone,as well as some swelling issues.

However, I

> > am not sure if her swelling issues are related to that or

something

> > else. Anyway, I pray that they can get you on a path of good

> > treatment, and hopefully you won't have to take to many more

meds. I

> > know personally that would just truly be the pits!!!

> > > God bless and Take care

> > > karen Tillman

> > > PF/Hermansky Pudlak Syndrome 2002

> > > NC

> > > www.myspace.com/karenshpskorner

> > > __________________________________________________________

> > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > Hermansky-Pudlak Syndrome Network Inc

> > > My NC phone:1

> > > NY home office 1. / fax

> > >

> > > * HPS is a genetic disorder that is characterized

> > > by albinism, visual impairment, and a bleeding problem.

> > > Some genetic mutations can include colitis and pulmonary

fibrosis.*

> > > http://www.hpsnetwork.org

> > > One South Road

> > > Oyster Bay, NY 11771

> > >

> > > Need Some Help!

> > >

> > > Hi All! I hope Everyone is doing Well! This morning I was told I

> > have

> > > Raynaud's Disease, only thing I know about this disease is

> > circulation

> > > stops. I was reading articles and it might explain why my blood

> > > pressure has been so high. I'm also retaining water!

> > >

> > > I shouldn't be complaining, but I don't need extra diseases to

be

> > added

> > > in my medical history because that means adding more medications

> > etc...

> > >

> > > Irene PF o3/07 Canada

September 10, 2007

,

The physician does not HAVE to sign the DNR form. There are two different ones. One is a yellow orange paper that goes with the ambulance if you call 911. The doctor needs a copy of it. Now for the other DNR form. You fill it out, with your wishes , it helps to get it notarized but you do not have to. Give a copy to your doctor and keep one with you. Alot of doctors and medical people say they will not accept copies, so just have alot of originals. It is your wishes, not theirs. Hospice was really mean with me when I would not sign their form but handed them my form. I worked as a medical social worker until last year. I helped many people with these forms. Dont take any guff from medical people. Especially nurse practioners.

L

Need Some Help!> > >> > > Hi All! I hope Everyone is doing Well! This morning I was told I> > have> > > Raynaud's Disease, only thing I know about this disease is> > circulation> > > stops. I was reading articles and it might explain why my blood> > > pressure has been so high. I'm also retaining water!> > >> > > I shouldn't be complaining, but I don't need extra diseases to be> > added> > > in my medical history because that means adding more medications> > etc...> > >> > > Irene PF o3/07 Canada

September 10, 2007

Florida:

1. Does the Doc know that the nurse practitioner is giving out this

kind of info. about blue shark injections in Mexico? Obviously, if

such a shot were to cure, or even make any of us significantly

better, there'd be a line waiting to get them.

2. Re your DNR: This is your decision, not his. Most doc think

they are god or at least sit on the right hand of god, but you

really are the decision maker here. I don't know the Fla laws, but,

here in backward SC, I would be able to get info re DNR's from any

Senior Citizens org or any hospital. See if there is a Senior

Citizens Ombudsman's Office, a county or area aenior citizen's

office or a local hospital patient advocate's office that can make

sure you get what YOU want.

In SC, if you have a DNR, it must be posted in plain sight so that,

if EMS is called, it is visible to them. Again in SC, if EMS is

called & the patient is not alert, any family member can override

the DNR. Living Wills also should be kept nearby. I've provided all

my docs with a copy of my LW,I have told them verbally what I want.

In SC & probably every where else, a copy of the LW must be provided

at every hospital admission since each admission consititues a

separate record. Patient Advocates at most hospitals will help with

LW's as will most Senior Organizations.

I read about all of the problems so many of us have with the medical

community. I've been thinking that we'd do just as well if each

person were provided with a symptom decision tree -- look up you

symptoms & look for the probably dx. Seems like we'd do almost as

well as some of these docs do & it'd cost us a lot less.

bf/IPF - 1/06/USA SC

In Breathe-Support , " Holloway "

wrote:

>

> Had my second appointment last month with the pulmo Dr. I was so

impressed

> the first visit.

>

> This time I saw a nurse practitioner ( after waiting an hour) who

gave me a

> web site to a Dr. in Mexico who gives blue shark injections that

> miraculously cure you .I couldn't believe it.

>

> I looked it up. They put you up in a hotel on USA side and bus

you across

> to Tijuana for treatment. $800.00 an injection.

>

> Dr came in and spent two minutes saying " Come in 6 months for PFTs

and MRI.

>

> It is so depressing. He never even checked my lungs .I asked him

about the

> loss of sense of smell. He said he didn't cover that go to an ear

nose and

> throat dr.

>

> Fortunately I have antibiotics on hand so was able to self

medicate as I had

> a nasty infection.

>

> I am going to stay as healthy as possible to avoid the Drs.

>

> Go twice a year for the testing.

>

> They can't do anything for this disease unless they come up with a

cure to

> restore lung function.

>

> He also refused to sign a do not resuscitate form I had printed

from the

> Internet. Another bridge to cross. Looked up the Hemlock Society

and they

> don't tell you a thing. They don't even have the same name anymore.

>

> Bah! Humbug!

>

> Florida P.F.04/06

>

> _____

>

> From: Breathe-Support

> [mailto:Breathe-Support ] On Behalf Of

scruffyscruffier123

> Sent: Saturday, September 08, 2007 1:27 PM

> To: Breathe-Support

> Subject: Re: T

>

> Hi Joyce & ,

>

> Usually, if I call a dr's office and have to explain things which

> would take 2 minutes and secretary doesn't understand and it takes

me

> 20 minutes and still doesn't understand what the heck I'm talking

> about I just tell her give me your fax# and I'll fax over the

message

> and give it to the dr.

>

> I don't know about the US, here dr's expect you to do what they

say,

> and you have no say about your care! Which is totally wrong,

because

> you know your body more than anyone else.

>

> The first gut feeling I get, that something isn't right in my

> treatments I totally speak out! and most of the times it gets me

in

> trouble! I completetly understand about the short fuse!

>

> Irene

> PF 03/07

> Raynaud's Disease 09/07

> Canada

>

> > > > Hey Irene,

> > > > I am so sry to hear about the Raynaud's. I have a friend

with

> this

> > > issue, and she has problems withher extremities turning blue

if

> she

> > > sits still for very lone,as well as some swelling issues.

> However, I

> > > am not sure if her swelling issues are related to that or

> something

> > > else. Anyway, I pray that they can get you on a path of good

> > > treatment, and hopefully you won't have to take to many more

> meds. I

> > > know personally that would just truly be the pits!!!

> > > > God bless and Take care

> > > > karen Tillman

> > > > PF/Hermansky Pudlak Syndrome 2002

> > > > NC

> > > > www.myspace.com/karenshpskorner

> > > > __________________________________________________________

> > > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > > Hermansky-Pudlak Syndrome Network Inc

> > > > My NC phone:1

> > > > NY home office 1. / fax

> > > >

> > > > * HPS is a genetic disorder that is characterized

> > > > by albinism, visual impairment, and a bleeding problem.

> > > > Some genetic mutations can include colitis and pulmonary

> fibrosis.*

> > > > http://www.hpsnetwo <http://www.hpsnetwork.org> rk.org

> > > > One South Road

> > > > Oyster Bay, NY 11771

> > > >

> > > > Need Some Help!

> > > >

> > > > Hi All! I hope Everyone is doing Well! This morning I was

told I

> > > have

> > > > Raynaud's Disease, only thing I know about this disease is

> > > circulation

> > > > stops. I was reading articles and it might explain why my

blood

> > > > pressure has been so high. I'm also retaining water!

> > > >

> > > > I shouldn't be complaining, but I don't need extra diseases

to

> be

> > > added

> > > > in my medical history because that means adding more

medications

> > > etc...

> > > >

> > > > Irene PF o3/07 Canada

>

September 10, 2007

Bonnie,

I like you!

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.

> > > > > Hey Irene,> > > > > I am so sry to hear about the Raynaud's. I have a friend > with > > this> > > > issue, and she has problems withher extremities turning blue > if > > she> > > > sits still for very lone,as well as some swelling issues. > > However, I> > > > am not sure if her swelling issues are related to that or > > something> > > > else. Anyway, I pray that they can get you on a path of good> > > > treatment, and hopefully you won't have to take to many more > > meds. I> > > > know personally that would just truly be the pits!!!> > > > > God bless and Take care> > > > > karen Tillman> > > > > PF/Hermansky Pudlak Syndrome 2002> > > > > NC> > > > > www.myspace.com/karenshpskorner> > > > > __________________________________________________________> > > > > Tillman, Regional Coordinator, Mid Atlantic-USA> > > > > Hermansky-Pudlak Syndrome Network Inc> > > > > My NC phone:1 > > > > > NY home office 1. / fax > > > > >> > > > > * HPS is a genetic disorder that is characterized> > > > > by albinism, visual impairment, and a bleeding problem.> > > > > Some genetic mutations can include colitis and pulmonary > > fibrosis.*> > > > > http://www.hpsnetwo <http://www.hpsnetwork.org> rk.org> > > > > One South Road> > > > > Oyster Bay, NY 11771> > > > >> > > > > Need Some Help!> > > > >> > > > > Hi All! I hope Everyone is doing Well! This morning I was > told I> > > > have> > > > > Raynaud's Disease, only thing I know about this disease is> > > > circulation> > > > > stops. I was reading articles and it might explain why my > blood> > > > > pressure has been so high. I'm also retaining water!> > > > >> > > > > I shouldn't be complaining, but I don't need extra diseases > to > > be> > > > added> > > > > in my medical history because that means adding more > medications> > > > etc...> > > > >> > > > > Irene PF o3/07 Canada> >>

September 10, 2007

WHAT ??? MEXICO??? WHAT???

Love and Prayers, Peggy ipf Florida

" Worry looks around, Sorry looks back, Faith looks up. "

Had my second appointment last month with the pulmo Dr. I was so

impressed the first visit.

This time I saw a nurse practitioner ( after waiting an hour) who

gave me a web site to a Dr. in Mexico who gives blue shark injections

that miraculously cure you .I couldn’t believe it.

I looked it up. They put you up in a hotel on USA side and bus you

across toTijuana for treatment. $800.00 an injection.

Dr came in and spent two minutes saying “Come in 6 months for PFTs

and MRI.

It is so depressing. He never even checked my lungs .I asked him

about the loss of sense of smell. He said he didn’t cover that go to

an ear nose and throat dr.

Fortunately I have antibiotics on hand so was able to self medicate

as I had a nasty infection.

I am going to stay as healthy as possible to avoid the Drs.

Go twice a year for the testing.

They can’t do anything for this disease unless they come up with a

cure to restore lung function.

He also refused to sign a do not resuscitate form I had printed from

the Internet. Another bridge to cross. Looked up the Hemlock Society

and they don’t tell you a thing. They don’t even have the same name

anymore.

Bah! Humbug!

Florida P.F.04/06

From: Breathe-Support [mailto:Breathe-

Support ] On Behalf Of scruffyscruffier123

Sent: Saturday, September 08, 2007 1:27 PM

To: Breathe-Support

Subject: Re: T

Hi Joyce & ,

Usually, if I call a dr's office and have to explain things which

would take 2 minutes and secretary doesn't understand and it takes me

20 minutes and still doesn't understand what the heck I'm talking

about I just tell her give me your fax# and I'll fax over the message

and give it to the dr.

I don't know about the US, here dr's expect you to do what they say,

and you have no say about your care! Which is totally wrong, because

you know your body more than anyone else.

The first gut feeling I get, that something isn't right in my

treatments I totally speak out! and most of the times it gets me in

trouble! I completetly understand about the short fuse!

Irene

PF 03/07

Raynaud's Disease 09/07

Canada

> > > Hey Irene,

> > > I am so sry to hear about the Raynaud's. I have a friend with

this

> > issue, and she has problems withher extremities turning blue if

she

> > sits still for very lone,as well as some swelling issues.

However, I

> > am not sure if her swelling issues are related to that or

something

> > else. Anyway, I pray that they can get you on a path of good

> > treatment, and hopefully you won't have to take to many more

meds. I

> > know personally that would just truly be the pits!!!

> > > God bless and Take care

> > > karen Tillman

> > > PF/Hermansky Pudlak Syndrome 2002

> > > NC

> > > www.myspace.com/karenshpskorner

> > > __________________________________________________________

> > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > Hermansky-Pudlak Syndrome Network Inc

> > > My NC phone:1

> > > NY home office 1. / fax

> > >

> > > * HPS is a genetic disorder that is characterized

> > > by albinism, visual impairment, and a bleeding problem.

> > > Some genetic mutations can include colitis and pulmonary

fibrosis.*

> > > http://www.hpsnetwork.org

> > > One South Road

> > > Oyster Bay, NY 11771

> > >

> > > Need Some Help!

> > >

> > > Hi All! I hope Everyone is doing Well! This morning I was told I

> > have

> > > Raynaud's Disease, only thing I know about this disease is

> > circulation

> > > stops. I was reading articles and it might explain why my blood

> > > pressure has been so high. I'm also retaining water!

> > >

> > > I shouldn't be complaining, but I don't need extra diseases to

be

> > added

> > > in my medical history because that means adding more medications

> > etc...

> > >

> > > Irene PF o3/07 Canada

September 10, 2007

WHAT ??? MEXICO??? WHAT???

Love and Prayers, Peggy ipf Florida

" Worry looks around, Sorry looks back, Faith looks up. "

Had my second appointment last month with the pulmo Dr. I was so

impressed the first visit.

This time I saw a nurse practitioner ( after waiting an hour) who

gave me a web site to a Dr. in Mexico who gives blue shark injections

that miraculously cure you .I couldn’t believe it.

I looked it up. They put you up in a hotel on USA side and bus you

across toTijuana for treatment. $800.00 an injection.

Dr came in and spent two minutes saying “Come in 6 months for PFTs

and MRI.

It is so depressing. He never even checked my lungs .I asked him

about the loss of sense of smell. He said he didn’t cover that go to

an ear nose and throat dr.

Fortunately I have antibiotics on hand so was able to self medicate

as I had a nasty infection.

I am going to stay as healthy as possible to avoid the Drs.

Go twice a year for the testing.

They can’t do anything for this disease unless they come up with a

cure to restore lung function.

He also refused to sign a do not resuscitate form I had printed from

the Internet. Another bridge to cross. Looked up the Hemlock Society

and they don’t tell you a thing. They don’t even have the same name

anymore.

Bah! Humbug!

Florida P.F.04/06

From: Breathe-Support [mailto:Breathe-

Support ] On Behalf Of scruffyscruffier123

Sent: Saturday, September 08, 2007 1:27 PM

To: Breathe-Support

Subject: Re: T

Hi Joyce & ,

Usually, if I call a dr's office and have to explain things which

would take 2 minutes and secretary doesn't understand and it takes me

20 minutes and still doesn't understand what the heck I'm talking

about I just tell her give me your fax# and I'll fax over the message

and give it to the dr.

I don't know about the US, here dr's expect you to do what they say,

and you have no say about your care! Which is totally wrong, because

you know your body more than anyone else.

The first gut feeling I get, that something isn't right in my

treatments I totally speak out! and most of the times it gets me in

trouble! I completetly understand about the short fuse!

Irene

PF 03/07

Raynaud's Disease 09/07

Canada

> > > Hey Irene,

> > > I am so sry to hear about the Raynaud's. I have a friend with

this

> > issue, and she has problems withher extremities turning blue if

she

> > sits still for very lone,as well as some swelling issues.

However, I

> > am not sure if her swelling issues are related to that or

something

> > else. Anyway, I pray that they can get you on a path of good

> > treatment, and hopefully you won't have to take to many more

meds. I

> > know personally that would just truly be the pits!!!

> > > God bless and Take care

> > > karen Tillman

> > > PF/Hermansky Pudlak Syndrome 2002

> > > NC

> > > www.myspace.com/karenshpskorner

> > > __________________________________________________________

> > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > Hermansky-Pudlak Syndrome Network Inc

> > > My NC phone:1

> > > NY home office 1. / fax

> > >

> > > * HPS is a genetic disorder that is characterized

> > > by albinism, visual impairment, and a bleeding problem.

> > > Some genetic mutations can include colitis and pulmonary

fibrosis.*

> > > http://www.hpsnetwork.org

> > > One South Road

> > > Oyster Bay, NY 11771

> > >

> > > Need Some Help!

> > >

> > > Hi All! I hope Everyone is doing Well! This morning I was told I

> > have

> > > Raynaud's Disease, only thing I know about this disease is

> > circulation

> > > stops. I was reading articles and it might explain why my blood

> > > pressure has been so high. I'm also retaining water!

> > >

> > > I shouldn't be complaining, but I don't need extra diseases to

be

> > added

> > > in my medical history because that means adding more medications

> > etc...

> > >

> > > Irene PF o3/07 Canada

September 11, 2007

Thanks, Joyce! I feel like I've worked all my life to give at least

half my income to the medicos, pharmacies & insurance cos. They all

certainly live a lot better than I do. I dropped a dentist one time

because, while I was incapacitated in his chair, he kept telling me

about his house, his lake house, all his cars, vacations &

recreational vehicles & how he was going to build a new office in an

expensive intown office park. This is while I'm driving a 10 year

old car & live in a very cheap condo in a marginal section of town.

I'm old enough that I don't always have to be nice anymore either.

It's all about ME now. And this is Bonnie off prednisone!

bf/ IPF 1/06/ USA-SC

> > > > > > Hey Irene,

> > > > > > I am so sry to hear about the Raynaud's. I have a friend

> > with

> > > this

> > > > > issue, and she has problems withher extremities turning

blue

> > if

> > > she

> > > > > sits still for very lone,as well as some swelling issues.

> > > However, I

> > > > > am not sure if her swelling issues are related to that or

> > > something

> > > > > else. Anyway, I pray that they can get you on a path of

good

> > > > > treatment, and hopefully you won't have to take to many

more

> > > meds. I

> > > > > know personally that would just truly be the pits!!!

> > > > > > God bless and Take care

> > > > > > karen Tillman

> > > > > > PF/Hermansky Pudlak Syndrome 2002

> > > > > > NC

> > > > > > www.myspace.com/karenshpskorner

> > > > > >

__________________________________________________________

> > > > > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > > > > Hermansky-Pudlak Syndrome Network Inc

> > > > > > My NC phone:1

> > > > > > NY home office 1. / fax

> > > > > >

> > > > > > * HPS is a genetic disorder that is characterized

> > > > > > by albinism, visual impairment, and a bleeding problem.

> > > > > > Some genetic mutations can include colitis and pulmonary

> > > fibrosis.*

> > > > > > http://www.hpsnetwo <http://www.hpsnetwork.org> rk.org

> > > > > > One South Road

> > > > > > Oyster Bay, NY 11771

> > > > > >

> > > > > > Need Some Help!

> > > > > >

> > > > > > Hi All! I hope Everyone is doing Well! This morning I was

> > told I

> > > > > have

> > > > > > Raynaud's Disease, only thing I know about this disease

is

> > > > > circulation

> > > > > > stops. I was reading articles and it might explain why my

> > blood

> > > > > > pressure has been so high. I'm also retaining water!

> > > > > >

> > > > > > I shouldn't be complaining, but I don't need extra

diseases

> > to

> > > be

> > > > > added

> > > > > > in my medical history because that means adding more

> > medications

> > > > > etc...

> > > > > >

> > > > > > Irene PF o3/07 Canada

> > >

> >

>

September 11, 2007

Thanks, Joyce! I feel like I've worked all my life to give at least

half my income to the medicos, pharmacies & insurance cos. They all

certainly live a lot better than I do. I dropped a dentist one time

because, while I was incapacitated in his chair, he kept telling me

about his house, his lake house, all his cars, vacations &

recreational vehicles & how he was going to build a new office in an

expensive intown office park. This is while I'm driving a 10 year

old car & live in a very cheap condo in a marginal section of town.

I'm old enough that I don't always have to be nice anymore either.

It's all about ME now. And this is Bonnie off prednisone!

bf/ IPF 1/06/ USA-SC

> > > > > > Hey Irene,

> > > > > > I am so sry to hear about the Raynaud's. I have a friend

> > with

> > > this

> > > > > issue, and she has problems withher extremities turning

blue

> > if

> > > she

> > > > > sits still for very lone,as well as some swelling issues.

> > > However, I

> > > > > am not sure if her swelling issues are related to that or

> > > something

> > > > > else. Anyway, I pray that they can get you on a path of

good

> > > > > treatment, and hopefully you won't have to take to many

more

> > > meds. I

> > > > > know personally that would just truly be the pits!!!

> > > > > > God bless and Take care

> > > > > > karen Tillman

> > > > > > PF/Hermansky Pudlak Syndrome 2002

> > > > > > NC

> > > > > > www.myspace.com/karenshpskorner

> > > > > >

__________________________________________________________

> > > > > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > > > > Hermansky-Pudlak Syndrome Network Inc

> > > > > > My NC phone:1

> > > > > > NY home office 1. / fax

> > > > > >

> > > > > > * HPS is a genetic disorder that is characterized

> > > > > > by albinism, visual impairment, and a bleeding problem.

> > > > > > Some genetic mutations can include colitis and pulmonary

> > > fibrosis.*

> > > > > > http://www.hpsnetwo <http://www.hpsnetwork.org> rk.org

> > > > > > One South Road

> > > > > > Oyster Bay, NY 11771

> > > > > >

> > > > > > Need Some Help!

> > > > > >

> > > > > > Hi All! I hope Everyone is doing Well! This morning I was

> > told I

> > > > > have

> > > > > > Raynaud's Disease, only thing I know about this disease

is

> > > > > circulation

> > > > > > stops. I was reading articles and it might explain why my

> > blood

> > > > > > pressure has been so high. I'm also retaining water!

> > > > > >

> > > > > > I shouldn't be complaining, but I don't need extra

diseases

> > to

> > > be

> > > > > added

> > > > > > in my medical history because that means adding more

> > medications

> > > > > etc...

> > > > > >

> > > > > > Irene PF o3/07 Canada

> > >

> >

>

September 11, 2007

Florida: I'm glad that you wrote a letter of complaint to the

doc office; the NP's actions were inappropriate at best. Wonder if

she gets a kickback from the shark shots or maybe she's just a

dufus.

I'm really surprised that the doc has to sign, or more accurately,

can decline to sign, a DNR at the request of a mentally competent

patient with a fatal disease. I think a lot of this, proper form,

right color paper, originals vs copies, etc., is driven by fear of

personal liability vs anything to do with patient care. Please send

me the form; I'd like to see it. Again, I encourage you to contact

an unbiased party for the correct legal info. I think that doc who

won't sign your form should be legally responsible for supporting

you for the rest of your life in a fashion to which you would like

to become accustomed.

bf/ IPF 1-06/ USA SC

Breathe-Support , " Holloway "

wrote:

>

> Hi Bonnie,

>

> I sent a written complaint to the Doctor about the information she

gave me..

> I will not see her again at the office.

>

> Re the DNR. The Doctor has to authorize it before it is valid. It

must be

> printed on yellow paper and in view for EMS etc.

>

> If you don't mind I will send it to you if that is okay. It really

surprised

> me as I thought we had the last word so to speak.

>

> Florida P.F.

>

> _____

>

> From: Breathe-Support

> [mailto:Breathe-Support ] On Behalf Of Bonnie

Faulkner

> Sent: Monday, September 10, 2007 5:52 PM

> To: Breathe-Support

> Subject: Re: Ranting about Drs office visits

>

> Florida:

> 1. Does the Doc know that the nurse practitioner is giving out

this

> kind of info. about blue shark injections in Mexico? Obviously, if

> such a shot were to cure, or even make any of us significantly

> better, there'd be a line waiting to get them.

>

> 2. Re your DNR: This is your decision, not his. Most doc think

> they are god or at least sit on the right hand of god, but you

> really are the decision maker here. I don't know the Fla laws,

but,

> here in backward SC, I would be able to get info re DNR's from any

> Senior Citizens org or any hospital. See if there is a Senior

> Citizens Ombudsman's Office, a county or area aenior citizen's

> office or a local hospital patient advocate's office that can make

> sure you get what YOU want.

>

> In SC, if you have a DNR, it must be posted in plain sight so

that,

> if EMS is called, it is visible to them. Again in SC, if EMS is

> called & the patient is not alert, any family member can override

> the DNR. Living Wills also should be kept nearby. I've provided

all

> my docs with a copy of my LW,I have told them verbally what I

want.

> In SC & probably every where else, a copy of the LW must be

provided

> at every hospital admission since each admission consititues a

> separate record. Patient Advocates at most hospitals will help

with

> LW's as will most Senior Organizations.

>

> I read about all of the problems so many of us have with the

medical

> community. I've been thinking that we'd do just as well if each

> person were provided with a symptom decision tree -- look up you

> symptoms & look for the probably dx. Seems like we'd do almost as

> well as some of these docs do & it'd cost us a lot less.

>

> bf/IPF - 1/06/USA SC

> In Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com>

> yahoogroups.com, " Holloway " <dholloway@>

> wrote:

> >

> > Had my second appointment last month with the pulmo Dr. I was so

> impressed

> > the first visit.

> >

> > This time I saw a nurse practitioner ( after waiting an hour)

who

> gave me a

> > web site to a Dr. in Mexico who gives blue shark injections that

> > miraculously cure you .I couldn't believe it.

> >

> > I looked it up. They put you up in a hotel on USA side and bus

> you across

> > to Tijuana for treatment. $800.00 an injection.

> >

> > Dr came in and spent two minutes saying " Come in 6 months for

PFTs

> and MRI.

> >

> > It is so depressing. He never even checked my lungs .I asked him

> about the

> > loss of sense of smell. He said he didn't cover that go to an

ear

> nose and

> > throat dr.

> >

> > Fortunately I have antibiotics on hand so was able to self

> medicate as I had

> > a nasty infection.

> >

> > I am going to stay as healthy as possible to avoid the Drs.

> >

> > Go twice a year for the testing.

> >

> > They can't do anything for this disease unless they come up with

a

> cure to

> > restore lung function.

> >

> > He also refused to sign a do not resuscitate form I had printed

> from the

> > Internet. Another bridge to cross. Looked up the Hemlock Society

> and they

> > don't tell you a thing. They don't even have the same name

anymore.

> >

> > Bah! Humbug!

> >

> > Florida P.F.04/06

> >

> > _____

> >

> > From: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com>

> yahoogroups.com

> > [mailto:Breathe-Support@ <mailto:Breathe-Support%

40yahoogroups.com>

> yahoogroups.com] On Behalf Of

> scruffyscruffier123

> > Sent: Saturday, September 08, 2007 1:27 PM

> > To: Breathe-Support@ <mailto:Breathe-Support%40yahoogroups.com>

> yahoogroups.com

> > Subject: Re: T

> >

> > Hi Joyce & ,

> >

> > Usually, if I call a dr's office and have to explain things

which

> > would take 2 minutes and secretary doesn't understand and it

takes

> me

> > 20 minutes and still doesn't understand what the heck I'm

talking

> > about I just tell her give me your fax# and I'll fax over the

> message

> > and give it to the dr.

> >

> > I don't know about the US, here dr's expect you to do what they

> say,

> > and you have no say about your care! Which is totally wrong,

> because

> > you know your body more than anyone else.

> >

> > The first gut feeling I get, that something isn't right in my

> > treatments I totally speak out! and most of the times it gets me

> in

> > trouble! I completetly understand about the short fuse!

> >

> > Irene

> > PF 03/07

> > Raynaud's Disease 09/07

> > Canada

> >

> > > > > Hey Irene,

> > > > > I am so sry to hear about the Raynaud's. I have a friend

> with

> > this

> > > > issue, and she has problems withher extremities turning blue

> if

> > she

> > > > sits still for very lone,as well as some swelling issues.

> > However, I

> > > > am not sure if her swelling issues are related to that or

> > something

> > > > else. Anyway, I pray that they can get you on a path of good

> > > > treatment, and hopefully you won't have to take to many more

> > meds. I

> > > > know personally that would just truly be the pits!!!

> > > > > God bless and Take care

> > > > > karen Tillman

> > > > > PF/Hermansky Pudlak Syndrome 2002

> > > > > NC

> > > > > www.myspace.com/karenshpskorner

> > > > > __________________________________________________________

> > > > > Tillman, Regional Coordinator, Mid Atlantic-USA

> > > > > Hermansky-Pudlak Syndrome Network Inc

> > > > > My NC phone:1

> > > > > NY home office 1. / fax

> > > > >

> > > > > * HPS is a genetic disorder that is characterized

> > > > > by albinism, visual impairment, and a bleeding problem.

> > > > > Some genetic mutations can include colitis and pulmonary

> > fibrosis.*

> > > > > http://www.hpsnetwo <http://www.hpsnetwo

<http://www.hpsnetwork.org>

> rk.org> rk.org

> > > > > One South Road

> > > > > Oyster Bay, NY 11771

> > > > >

> > > > > Need Some Help!

> > > > >

> > > > > Hi All! I hope Everyone is doing Well! This morning I was

> told I

> > > > have

> > > > > Raynaud's Disease, only thing I know about this disease is

> > > > circulation

> > > > > stops. I was reading articles and it might explain why my

> blood

> > > > > pressure has been so high. I'm also retaining water!

> > > > >

> > > > > I shouldn't be complaining, but I don't need extra

diseases

> to

> > be

> > > > added

> > > > > in my medical history because that means adding more

> medications

> > > > etc...

> > > > >

> > > > > Irene PF o3/07 Canada

> >

>

September 11, 2007

Thanks Bonnie. I will send it to you

privately.

Regards,

Florida P.F.04/06

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Bonnie Faulkner

Sent: Tuesday, September 11, 2007

6:30 PM

To: Breathe-Support

Subject: Re:

Ranting about Drs office visits

Florida: I'm glad that you wrote a letter of

complaint to the