Re: Living with PF My $.02

[Guest guest]

Sounds like your doctor did exactly what we'd hope more would do.

Mine listened and answered when I basically forced him to, but as far

as any of the extras you mentioned, he didn't. Let's take a further

example. I know there are many people in the Dallas Fort Worth area

with PF. Except for Gwynne, I've never seen another on any forum.

Now, I know some would have no interest, but I think a lot have no

idea this board exists.

>

> Let's face it folks a lot of Dr's. don't have that good ol' bedside

> manner. Then again we probably don't either. Maybe I've been lucky

> here or maybe it's just my half full perspective on things and the

> fact that I tend to be proactive and and an active listener.

>

> I'm not my Pulmo's first PF patient. (BTB I've been a Kaiser member

> all my life) He told what I could expect from the disease. He

referred

> me to the local support group and the CPF and a social worker. He

told

> me the treatment options for my DX UIP and LCH (nothing curative all

> palliative including transplant!) He took the time to answer my

> questions as best he could.

>

> Fer criminy's sake folks it has got to be frustrating as all get out

> to be a Doctor and have a patient and can do nothing to cure them of

> their ailment.

>

> Enjoy each day as if it were your last. For every ending there is a

> beginning. Stay in the moment. The glass IS half full. Do your best

to

> stay in front on the issue (be proactive.) Listen actively! Remember

> there are times when life isn't all you want, but it is all you

have.

>

> Peace

>

> UIP/LCH 5.06 CA

>

[Guest guest]

Hi , You have been pretty lucky to have an understanding dr etc....We as group understand that dr's have other patients to see, having to do their rounds on hospitals wards, being on call and having to see patients in their offices. Once the patient is in your office treat them as a person/respect/dignity even if the appointment last for 5 minutes or so...Don't treat that person, like they're nothing just a disease/number to you and who cares.....

I would say again you were lucky that you got all the information you needed from your medical team. Unfortunately, there are other people who got no information etc....Just the name of the disease and were sent home to deal with it. I spent about a month researching on the disease....you want to know the first thing I saw "you only have 5 years to live".

I was completely shocked and it took me about 7 months to tell my mom what was really going on. What PF was all about etc....

and we will take take it day by day!.....

We all have to understand, that we come from different places, things work differently in the medical field and because one is receiving the best ever medical treatment, it does not neccessarily mean the person next to you, is receiving the same medical care.

That's just my opinion

Irene

---- Original Message ----

To: Breathe-Support

Sent: Sun, 13 Jan 2008 3:48 pm

Subject: Living with PF My $.02

Let's face it folks a lot of Dr's. don't have that good ol' bedside

manner. Then again we probably don't either. Maybe I've been lucky

here or maybe it's just my half full perspective on things and the

fact that I tend to be proactive and and an active listener.

I'm not my Pulmo's first PF patient. (BTB I've been a Kaiser member

all my life) He told what I could expect from the disease. He referred

me to the local support group and the CPF and a social worker. He told

me the treatment options for my DX UIP and LCH (nothing curative all

palliative including transplant!) He took the time to answer my

questions as best he could.

Fer criminy's sake folks it has got to be frustrating as all get out

to be a Doctor and have a patient and can do nothing to cure them of

their ailment.

Enjoy each day as if it were your last. For every ending there is a

beginning. Stay in the moment. The glass IS half full. Do your best to

stay in front on the issue (be proactive.) Listen actively! Remember

there are times when life isn't all you want, but it is all you have.

Peace

UIP/LCH 5.06 CA

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

you are probably right. Drs know there is no cure as yet. It has to be hard on them also. I have tried searchng for clinical trials but none close to me at this time. There is always a chance that some new drugs will be developed that will at least slow PF down. In addition to my meds I take a herbal supplement called ( Clear Lungs ) and it does help breathe a little easier. It is supposed to help lungs stay pliable so they can get more oxygen to the blood stream.

COPD/ Sleep Apneia / PF 06/07 Ca.

Living with PF My $.02

Let's face it folks a lot of Dr's. don't have that good ol' bedsidemanner. Then again we probably don't either. Maybe I've been luckyhere or maybe it's just my half full perspective on things and thefact that I tend to be proactive and and an active listener.I'm not my Pulmo's first PF patient. (BTB I've been a Kaiser memberall my life) He told what I could expect from the disease. He referredme to the local support group and the CPF and a social worker. He toldme the treatment options for my DX UIP and LCH (nothing curative allpalliative including transplant!) He took the time to answer myquestions as best he could. Fer criminy's sake folks it has got to be frustrating as all get outto be a Doctor and have a patient and can do nothing to cure them oftheir ailment. Enjoy each day as if it were your last. For every ending there is abeginning. Stay in the moment. The glass IS half full.

Do your best tostay in front on the issue (be proactive.) Listen actively! Rememberthere are times when life isn't all you want, but it is all you have.Peace UIP/LCH 5.06 CA

[Guest guest]

I agree with Zena how do you know what to ask, how do you know what

to look for. Its why we go to teh doctor. I get their busy, I get

they are human, I get they dont know everything, but I am human too

and I go to them because I dont know the answer and for that matter I

dont know the questions at some things either.

sandie

> > >

> > > Let's face it folks a lot of Dr's. don't have that good ol'

bedside

> > > manner. Then again we probably don't either. Maybe I've been

lucky

> > > here or maybe it's just my half full perspective on things and

the

> > > fact that I tend to be proactive and and an active listener.

> > >

> > > I'm not my Pulmo's first PF patient. (BTB I've been a Kaiser

member

> > > all my life) He told what I could expect from the disease. He

> > referred

> > > me to the local support group and the CPF and a social worker.

He

> > told

> > > me the treatment options for my DX UIP and LCH (nothing

curative all

> > > palliative including transplant!) He took the time to answer my

> > > questions as best he could.

> > >

> > > Fer criminy's sake folks it has got to be frustrating as all

get out

> > > to be a Doctor and have a patient and can do nothing to cure

them of

> > > their ailment.

> > >

> > > Enjoy each day as if it were your last. For every ending there

is a

> > > beginning. Stay in the moment. The glass IS half full. Do your

best

> > to

> > > stay in front on the issue (be proactive.) Listen actively!

Remember

> > > there are times when life isn't all you want, but it is all you

> > have.

> > >

> > > Peace

> > >

> > > UIP/LCH 5.06 CA

> > >

> >

>

[Guest guest]

Sandie,

I know that all of this seems overwhelming at this point. I felt that

way and I'm sure most also were early on. Learning what you need to

know wont happen over night but it has to begin now.

Start with simple statements and questions i.e. " I don't understand. "

" What does this mean for me? " etc.. Write your questions out ahead of

time. Take your spouse, your minister/priest/rebbe, your eldest child,

your oldest friend. Someone you can trust to be your ears, someone to

take notes. Set up a reliable system of communication with your Dr..

I think it was Lao Tze who said " The long journey begins with the

first step. " Sandie I think you've taken that first step.

Peace

UIP/LCH 5.06 CA

> > > >

> > > > Let's face it folks a lot of Dr's. don't have that good ol'

> bedside

> > > > manner. Then again we probably don't either. Maybe I've been

> lucky

> > > > here or maybe it's just my half full perspective on things and

> the

> > > > fact that I tend to be proactive and and an active listener.

> > > >

> > > > I'm not my Pulmo's first PF patient. (BTB I've been a Kaiser

> member

> > > > all my life) He told what I could expect from the disease. He

> > > referred

> > > > me to the local support group and the CPF and a social worker.

> He

> > > told

> > > > me the treatment options for my DX UIP and LCH (nothing

> curative all

> > > > palliative including transplant!) He took the time to answer my

> > > > questions as best he could.

> > > >

> > > > Fer criminy's sake folks it has got to be frustrating as all

> get out

> > > > to be a Doctor and have a patient and can do nothing to cure

> them of

> > > > their ailment.

> > > >

> > > > Enjoy each day as if it were your last. For every ending there

> is a

> > > > beginning. Stay in the moment. The glass IS half full. Do your

> best

> > > to

> > > > stay in front on the issue (be proactive.) Listen actively!

> Remember

> > > > there are times when life isn't all you want, but it is all you

> > > have.

> > > >

> > > > Peace

> > > >

> > > > UIP/LCH 5.06 CA

> > > >

> > >

> >

>

[Guest guest]

Thanks it is very frustrating and I dont doubt everyone has

been in my shoes its probably why its so easy to ounderstand where I

am coming from. I will figure something out, I just dont know what

yet.

Sandie

> > > > >

> > > > > Let's face it folks a lot of Dr's. don't have that good ol'

> > bedside

> > > > > manner. Then again we probably don't either. Maybe I've

been

> > lucky

> > > > > here or maybe it's just my half full perspective on things

and

> > the

> > > > > fact that I tend to be proactive and and an active listener.

> > > > >

> > > > > I'm not my Pulmo's first PF patient. (BTB I've been a

Kaiser

> > member

> > > > > all my life) He told what I could expect from the disease.

He

> > > > referred

> > > > > me to the local support group and the CPF and a social

worker.

> > He

> > > > told

> > > > > me the treatment options for my DX UIP and LCH (nothing

> > curative all

> > > > > palliative including transplant!) He took the time to

answer my

> > > > > questions as best he could.

> > > > >

> > > > > Fer criminy's sake folks it has got to be frustrating as

all

> > get out

> > > > > to be a Doctor and have a patient and can do nothing to

cure

> > them of

> > > > > their ailment.

> > > > >

> > > > > Enjoy each day as if it were your last. For every ending

there

> > is a

> > > > > beginning. Stay in the moment. The glass IS half full. Do

your

> > best

> > > > to

> > > > > stay in front on the issue (be proactive.) Listen actively!

> > Remember

> > > > > there are times when life isn't all you want, but it is all

you

> > > > have.

> > > > >

> > > > > Peace

> > > > >

> > > > > UIP/LCH 5.06 CA

> > > > >

> > > >

> > >

> >

>