Re: Relevant Questions

[Guest guest]

Bob, There is a list of questions on the database .

Go down to the bottom of the post and click on files I think and you'ss

find a list that we've compiled.

Z 64, fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

*“I’m gonna be iron like a lion in Zion” Bob Marley*

*Vinca Minor-periwinkle is my flower*

* *

* *

Bob wrote:

>

> Does anyone have a list of questions they would like to share here?

> The questions that need answers now before you leave the Pulmonary

> office. I know that questions need to be related but there should be

> a group of common ground questions that the patient should ask and

> expect answers too. I'm out of breath and still left the office

> myself without knowing what the next step would or should be. DON " T

> leave without knowing the next step. What is my (Our) next step, make

> the appointments now. How do I get o2? Write them down, and keep

> them. With this type of disease that sucks the very air we need to,

> there is enough panic, anxiety. Some of you have learned to cope with

> this so much better then the newer folks. If I could do one little

> thing that would stop you from having a panic attack or cause

> unnecessary worry, that would be a great start. As in my own case I

> still have a million miles to travel before I can even get close to

> filling some of your shoes. Without trying to name all and then

> missing someone, I want each of you to know you have touched my

> heart, with your compassion, your knowledge, an your attitude toward

> this hiccup in life. bob

>

> Please attach PF questions here:

> 1.

>

>

> ------------------------------------------------------------------------

>

>

> No virus found in this incoming message.

> Checked by AVG - http://www.avg.com

> Version: 8.0.176 / Virus Database: 270.9.12/1822 - Release Date: 12/1/2008

8:23 AM

>

>

[Guest guest]

Thanks . I had forgotten those questions were posted there. Bob, to those questions I would also ask things like. How do I know whether or not I need supplemental O2? What tests would you recommend? What about O2 while I'm sleeping? How do I know if my saturations drop while I'm asleep? If I do need O2, how much and under what circumstances?

It's important to make your doctor understand that you wish to be active and that you're not planning on spending the rest of your life in bed. Alot of doctors and many of the staff at O2 suppliers are not accustomed to dealing with otherwise healthy people who need oxygen. If the doctor measures your sats while sitting in his office and it's 94, ask him what happens when I walk my dog? What happens when I mow my lawn? What happens when I carry groceries in from the car or just walk up a flight of stairs? If he says, don't do those things, tell him you wish to live as normal a life as possible. Tell him you don't want to live as an invalid, sitting around so that your sats don't drop. Tell him you want to stay in shape and remain as healthy as possible and you need his help to do that.

Bob, I'm so glad that you have found this group. I know what a tremendous difference these people have made in my life and wish the same for you!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Tuesday, December 2, 2008 12:08:25 AMSubject: Re: Relevant QuestionsBob, There is a list of questions on the database .Go down to the bottom of the post and click on files I think and you'ss find a list that we've compiled. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara*“I’m gonna be iron like a lion in Zion” Bob Marley**Vinca Minor-periwinkle is my flower** ** *Bob

wrote:>> Does anyone have a list of questions they would like to share here?> The questions that need answers now before you leave the Pulmonary> office. I know that questions need to be related but there should be> a group of common ground questions that the patient should ask and> expect answers too. I'm out of breath and still left the office> myself without knowing what the next step would or should be. DON"T> leave without knowing the next step. What is my (Our) next step, make> the appointments now. How do I get o2? Write them down, and keep> them. With this type of disease that sucks the very air we need to,> there is enough panic, anxiety. Some of you have learned to cope with> this so much better then the newer folks. If I could do one little> thing that would stop you from having a panic attack or cause> unnecessary worry, that would be a

great start. As in my own case I> still have a million miles to travel before I can even get close to> filling some of your shoes. Without trying to name all and then> missing someone, I want each of you to know you have touched my> heart, with your compassion, your knowledge, an your attitude toward> this hiccup in life. bob>> Please attach PF questions here:> 1.>> > ------------------------------------------------------------------------>>> No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.176 / Virus Database: 270.9.12/1822 - Release Date: 12/1/2008 8:23 AM>> ------------------------------------

[Guest guest]

Bob

I don't know if i mentioned this to you before--get a notebook and take it with you to all doctor's appointments

in the beginning, someone with IPF showed me his composition book and that is what I use for both myself and Jerry

since the summer of 2006, jerry is on his second book and i just started my third book

when jerry was very sick, i made notes at home, in the hospital, in the doc's office, etc

I found that jerry was getting confused with sequence of events when he was sick and i needed to keep them straight when the docs asked questions, this helped a great deal

also keep a binder with all of your labs, xrays, pfts, discharge summaries, etc

lots of people in this group do that

I used to carry the binder when going to the docs, it's too heavy now

so i just carry the newest results and let the various docs copy them

there is such a lack of communication between some of the docs

I think it is important for doc A to know what is happening with doc B

i hope this makes sense

in the meantime, i keep a list of questions in my notebook--sometimes on a separate peice of paper as I think of them, and then combine them for the appointment and list the answers in the notebook

when the doc first prescribed O2 it was to be used on exertion

they don't tell me how many liters to use, they ask me how many liters I use

yes it is silly, when i go for an appt and the nurse uses the oximeter while sitting with O2 on--of course the SAT will be in the high 90's for me

fortunately, the doc sees the 6 min walk, where the SAT drops while walking, so she gets a better picture--

the techs give me the results of the 6 min walk and PFTs

"to carry to the docs' office"

the doc looks at them and returns them to me

last week I started going up stairs a couple of times a week, check my SAT at the top and the bottom and keep a record of it

then i emailed the results to the doc's office

right now I am playing phone tag with the nurse waiting to find out the next course of action with the meds

I email the pulmonary's office, when real important, i telephone in addition to the email

my emails go on my chart

getting through to the nurse can be difficult--this way she has all of the data to discuss with the doc and she calls me backPink Joyce IPF 3/06 Pennsylvania

Subject: Relevant QuestionsTo: Breathe-Support Date: Monday, December 1, 2008, 11:25 PM

Does anyone have a list of questions they would like to share here? The questions that need answers now before you leave the Pulmonary office. I know that questions need to be related but there should be a group of common ground questions that the patient should ask and expect answers too. I'm out of breath and still left the office myself without knowing what the next step would or should be. DON"T leave without knowing the next step. What is my (Our) next step, make the appointments now. How do I get o2? Write them down, and keep them. With this type of disease that sucks the very air we need to, there is enough panic, anxiety. Some of you have learned to cope with this so much better then the newer folks. If I could do one little thing that would stop you from having a panic attack or cause unnecessary worry, that would be a great start. As in my own case I still have a million miles to travel

before I can even get close to filling some of your shoes. Without trying to name all and then missing someone, I want each of you to know you have touched my heart, with your compassion, your knowledge, an your attitude toward this hiccup in life. bobPlease attach PF questions here:1.

[Guest guest]

Don't fret about tomorrow, God is already there!

Relevant Questions

Does anyone have a list of questions they would like to share here? The questions that need answers now before you leave the Pulmonary office. I know that questions need to be related but there should be a group of common ground questions that the patient should ask and expect answers too. I'm out of breath and still left the office myself without knowing what the next step would or should be. DON"T leave without knowing the next step. What is my (Our) next step, make the appointments now. How do I get o2? Write them down, and keep them. With this type of disease that sucks the very air we need to, there is enough panic, anxiety. Some of you have learned to cope with this so much better then the newer folks. If I could do one little thing that would stop you from having a panic attack or cause unnecessary worry, that would be a great start. As in my own case I still have a million miles to travel before I can even get close to filling some of your shoes. Without trying to name all and then missing someone, I want each of you to know you have touched my heart, with your compassion, your knowledge, an your attitude toward this hiccup in life. bobPlease attach PF questions here:

1. When dx, ask for full explanation of dx and what "type" of PF you have and

then get a second opinion from a PULMONOLOGIST.2. Explanation of all testing, labs, x-rays and scans and get copies! > Sher

[Guest guest]

Bob ... I knew others would answer so I left some room! lol

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

Re: Relevant QuestionsBob, There is a list of questions on the database .Go down to the bottom of the post and click on files I think and you'ss find a list that we've compiled. Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara*“I’m gonna be iron like a lion in Zion” Bob Marley**Vinca Minor-periwinkle is my flower** ** *Bob wrote:>> Does anyone have a list of questions they would like to share here?> The questions that need answers now before you leave the Pulmonary> office. I know that questions need to be related but there should be> a group of common ground questions that the patient should ask and> expect answers too. I'm out of breath and still left the office> myself without knowing what the next step would or should be. DON"T> leave without knowing the next step. What is my (Our) next step, make> the appointments now. How do I get o2? Write them down, and keep> them. With this type of disease that sucks the very air we need to,> there is enough panic, anxiety. Some of you have learned to cope with> this so much better then the newer folks. If I could do one little> thing that would stop you from having a panic attack or cause> unnecessary worry, that would be a great start. As in my own case I> still have a million miles to travel before I can even get close to> filling some of your shoes. Without trying to name all and then> missing someone, I want each of you to know you have touched my> heart, with your compassion, your knowledge, an your attitude toward> this hiccup in life. bob>> Please attach PF questions here:> 1.>> > ------------------------------------------------------------------------>>> No virus found in this incoming message.> Checked by AVG - http://www.avg.com > Version: 8.0.176 / Virus Database: 270.9.12/1822 - Release Date: 12/1/2008 8:23 AM>> ------------------------------------

[Guest guest]

great idea--i haven't put anything on disk--i'm sure it makes it much easier to carryPink Joyce IPF 3/06 Pennsylvania

From: Bob < fastprop (AT) comcast (DOT) net >Subject: Relevant QuestionsTo: Breathe-Support@ yahoogroups. comDate: Monday, December 1, 2008, 11:25 PM

Does anyone have a list of questions they would like to share here? The questions that need answers now before you leave the Pulmonary office. I know that questions need to be related but there should be a group of common ground questions that the patient should ask and expect answers too. I'm out of breath and still left the office myself without knowing what the next step would or should be. DON"T leave without knowing the next step. What is my (Our) next step, make the appointments now. How do I get o2? Write them down, and keep them. With this type of disease that sucks the very air we need to, there is enough panic, anxiety. Some of you have learned to cope with this so much better then the newer folks. If I could do one little thing that would stop you from having a panic attack or cause unnecessary worry, that would

be a great start. As in my own case I still have a million miles to travel before I can even get close to filling some of your shoes. Without trying to name all and then missing someone, I want each of you to know you have touched my heart, with your compassion, your knowledge, an your attitude toward this hiccup in life. bobPlease attach PF questions here:1.

[Guest guest]

great idea--i haven't put anything on disk--i'm sure it makes it much easier to carryPink Joyce IPF 3/06 Pennsylvania

From: Bob < fastprop (AT) comcast (DOT) net >Subject: Relevant QuestionsTo: Breathe-Support@ yahoogroups. comDate: Monday, December 1, 2008, 11:25 PM

Does anyone have a list of questions they would like to share here? The questions that need answers now before you leave the Pulmonary office. I know that questions need to be related but there should be a group of common ground questions that the patient should ask and expect answers too. I'm out of breath and still left the office myself without knowing what the next step would or should be. DON"T leave without knowing the next step. What is my (Our) next step, make the appointments now. How do I get o2? Write them down, and keep them. With this type of disease that sucks the very air we need to, there is enough panic, anxiety. Some of you have learned to cope with this so much better then the newer folks. If I could do one little thing that would stop you from having a panic attack or cause unnecessary worry, that would

be a great start. As in my own case I still have a million miles to travel before I can even get close to filling some of your shoes. Without trying to name all and then missing someone, I want each of you to know you have touched my heart, with your compassion, your knowledge, an your attitude toward this hiccup in life. bobPlease attach PF questions here:1.