Re: Heresy... someone please put me where I belong

[Guest guest]

Stefani

Prescriptions for oxygen and for other medical equipment or assistance

ultimately. Your equipment needs will change.

In the event of complications, a doctor who knows your history and can

bring that knowledge to hospital care (my pulmonologist does practice at

the hospital I would go to and although he might not be the one on call,

he could be consulted and then see thereafter on rounds).

Reality is if you've chosen not to take any meds then you may not need

to see your pulmonologist very frequently. Whether to have one is surely

your choice just as trying meds or any other choice is. I would sort of

want one at least for some of the circumstances that might arise.

There is no right or wrong in these cases. Just make informed choices

and be happy with them but always be open to changing your mind. As to

knowing what you have, I thought that was still a somewhat confused

issue. Do you understand the differences and what that might mean in

treatment? For instance, cellular NSIP does generally respond to

steroids while UIP is considered not to.

I choose not to take steroids because of the nature of my UIP and lack

of alveolitis or an identified connective tissue disease. Others do it

just because they don't want them. I don't want them either, but if I

had a condition that indicated they would help, I might change. Many

doctors will state clearly steroids don't help UIP. Meanwhile many other

doctors, such as I read in a debate Dr. Raghu participated in and

expressed this opinion, that everyone with PF should be prescribed

steroids. So, when the experts have such divergent opinions, certainly

makes sense we all make different choices.

I have doctors I see only once a year because the conditions I see them

for are managed. I still have them " just in case " and they still order

new prescriptions for me.

>

> I want to know why I need a pulmonologist? I know what I have. I

know there is no cure. I am in rehab and developing a home program. I

have the equipment I need and an oximeter to self monitor. I see my GP

regularly and take pretty good care of myself. I eat well and have a

positive attitude (if I stay away from pulmonologists). I have been to

the National Jewish Health Center. I do not need to know how quickly I

am going down hill. I intend to maintain status quo as long as

possible.

>

> Someone please put me in my place and tell me my thinking is wrong.

>

> Stefani (age 61) 12 year resident of Utah

> ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006,

Sleep Apnea 4/2009

>

[Guest guest]

Stefani,

Well I'm not going to tell you that you are wrong. I will say that given the number and complexity of the pulmonologic issues that you list after your signature I would not be comfortable without regular contact with a pulmonologist. That's me, you may feel very differently. I would want to maintain a relationship with a pulmo even if it's only once a year so that I have someone to get in touch with should things get more complicated.

Take something as simple as the flu. When I contracted H1N1 back in May I was admitted through the ER to the pulmonology floor in the hospital though I had no pneumonia, no respiratory symptoms at all.

My GP wanted me to have a colonoscopy when I turned 50. My lungs are an issue because of the sedation. My pulmonologist had to be consulted. Almost anything that happens to us, any illness we have, any accident we may be involved in, our lungs become an issue. Without a pulmonologist of record, if you are admitted to the hospital, you are at the mercy of whoever is on call at the time. That's really not a situation you want to be in. It's luck of the draw unless you can say, my pulmo is Dr So and So.

I totally get why you feel the way you do. My advice (for what that's worth LOL) would be to cut back to maybe once or twice a year if you can be comfortable with that. Maintain a relationship with a pulmo but cut it back so that you feel less consumed by it. That way you've got someone you know and who knows you if you need it.

Just my 2 cents!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, September 22, 2009 8:07:08 PMSubject: Heresy... someone please put me where I belong

I want to know why I need a pulmonologist? I know what I have. I know there is no cure. I am in rehab and developing a home program. I have the equipment I need and an oximeter to self monitor. I see my GP regularly and take pretty good care of myself. I eat well and have a positive attitude (if I stay away from pulmonologists) . I have been to the National Jewish Health Center. I do not need to know how quickly I am going down hill. I intend to maintain status quo as long as possible.Someone please put me in my place and tell me my thinking is wrong.Stefani (age 61) 12 year resident of UtahILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

What is a oximeter......please don't say DUH lol

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Tuesday, September 22, 2009 8:07:08 PMSubject: Heresy... someone please put me where I belong

I want to know why I need a pulmonologist? I know what I have. I know there is no cure. I am in rehab and developing a home program. I have the equipment I need and an oximeter to self monitor. I see my GP regularly and take pretty good care of myself. I eat well and have a positive attitude (if I stay away from pulmonologists) . I have been to the National Jewish Health Center. I do not need to know how quickly I am going down hill. I intend to maintain status quo as long as possible.Someone please put me in my place and tell me my thinking is wrong.Stefani (age 61) 12 year resident of UtahILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

[Guest guest]

Stefani,Because you deserve a good doctor. They are out there and I believe you will find one. You need one for all the reasons Bruce and Beth outlined. Take a moment to remember you Are the Most Powerful Women in Salt Lake and go out and kick some pulmo butt!Dyane Phoenix ipf 02>> I want to know why I need a pulmonologist? I know what I have. I know there is no cure. I am in rehab and developing a home program. I have the equipment I need and an oximeter to self monitor. I see my GP regularly and take pretty good care of myself. I eat well and have a positive attitude (if I stay away from pulmonologists). I have been to the National Jewish Health Center. I do not need to know how quickly I am going down hill. I intend to maintain status quo as long as possible.> > Someone please put me in my place and tell me my thinking is wrong.> > Stefani (age 61) 12 year resident of Utah> ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009>

[Guest guest]

DUH...ok, I had to since you said not to.lol

An oximeter is an instrument which you place on your finger to measure

the percent of oxygen in your blood. We refer to that as your saturation

level. Above 90% is generally considered safe while below 90% can do

damage to your organs, specifically the right side of your heart. Here

is an example:

http://portablenebs.com/choiceoximeter.htm

Here is one you often see at doctor's offices:

http://www.price-medical.com/Nonin-Onyx-9500-Oximeter-p/onyx%20%289500%2\

9.htm?gclid=CNKBgtPchp0CFRyfnAodRjSNbA

>

> What is a oximeter......please don't say DUH lol

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> <FONT face= " comic sans ms " color=#40007f size=3> Soulliere & nbsp;

<IMG

src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif " ></FONT>

>

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> ________________________________

> From: Stefani sfshaner@...

> To: Breathe-Support

> Sent: Tuesday, September 22, 2009 8:07:08 PM

> Subject: Heresy... someone please put me where I

belong

>

>

> I want to know why I need a pulmonologist? I know what I have. I know

there is no cure. I am in rehab and developing a home program. I have

the equipment I need and an oximeter to self monitor.. I see my GP

regularly and take pretty good care of myself. I eat well and have a

positive attitude (if I stay away from pulmonologists) . I have been to

the National Jewish Health Center. I do not need to know how quickly I

am going down hill. I intend to maintain status quo as long as possible.

>

> Someone please put me in my place and tell me my thinking is wrong.

>

> Stefani (age 61) 12 year resident of Utah

> ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006,

Sleep Apnea 4/2009

>

[Guest guest]

I use the oximeter -- the thing you put on your finger -- to tell me if i need to use my oxygen and to tell me if i need to increase the liters per minute -- the level of activity affects my oxygen level

it also tells the heart beat -- pulse

the lower the SAT [Oxygen saturation level], the higher the pulse might be -- because the heart has to work harder to get oxygen into your lungs

oximeters can be purchased on line, Bruce already gave you some websites

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Heresy... someone please put me where I belongTo: Breathe-Support Date: Tuesday, September 22, 2009, 10:52 PM

DUH...ok, I had to since you said not to.lolAn oximeter is an instrument which you place on your finger to measurethe percent of oxygen in your blood. We refer to that as your saturationlevel. Above 90% is generally considered safe while below 90% can dodamage to your organs, specifically the right side of your heart. Hereis an example:http://portablenebs .com/choiceoxime ter.htmHere is one you often see at doctor's offices:http://www.price- medical.com/ Nonin-Onyx- 9500-Oximeter- p/onyx%20% 289500%2\9.htm?gclid= CNKBgtPchp0CFRyf nAodRjSNbA>> What is a oximeter.... ..please don't say DUH lol>>>>>> <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp;<IMGsrc="http://us.i1. yimg.com/ us.yimg.com/ i/mesg/tsmileys2 /50.gif"></FONT>>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, September 22, 2009 8:07:08 PM> Subject:

Heresy... someone please put me where Ibelong>>> I want to know why I need a pulmonologist? I know what I have. I knowthere is no cure. I am in rehab and developing a home program. I havethe equipment I need and an oximeter to self monitor.. I see my GPregularly and take pretty good care of myself. I eat well and have apositive attitude (if I stay away from pulmonologists) . I have been tothe National Jewish Health Center. I do not need to know how quickly Iam going down hill. I intend to maintain status quo as long as possible.>> Someone please put me in my place and tell me my thinking is wrong.>> Stefani (age 61) 12 year resident of Utah> ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006,Sleep Apnea 4/2009>