Re: A I.Pulmonary Fibrosis Newbie

[Guest guest]

Hi Mike,

I'm glad you found us. But, also, sad you needed to. We all say there's no

expiration date stamped on our butts. You'll find great people and loads of

great information here. So, welcome to our " air family "

Nan 50, MA

List started '84

RB/ILD '04

PF '08

Asthma '09

>

>

> Hello Ladies and Gents.....

>

>

>

> I'm Mike Dailing, of Carlsbad, California... and I'm presuming (not assuming)

I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis.

>

>

>

> I don't know much... other than the " Shock of my life " one week ago was when

My Veterans Administration Doctor told me " you have 24 months " to live. All

that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing.

>

>

>

> Anyways.. I'm glad to be amongst the best here.. and hope I can share and

receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to

let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY.

>

>

>

> That said.. I'll need to have a Lotta input from my fellow Pulmonary

patients.. as well as providing the information I have.

>

>

>

> You know, I don't know if this can be beat. I have strong Ideas.. that I can

disprove the doctors statements... In fact, prolong my life.. WHATEVER the True

Diagnosis is.

>

>

>

> So, I'm hoping to share and participate the best way I can with my Fellow

group " Breath-Support " partners.... I'm IN for the LONG Haul !

>

>

>

> Thanks,

>

>

>

> Mike Dailing

>

> Carlsbad, Calif.

>

> _________________________________________________________________

> Your E-mail and More On-the-Go. Get Windows Live Hotmail Free.

> https://signup.live.com/signup.aspx?id=60969

>

[Guest guest]

Hi Mike,

Welcome to the group, My name is Bob and I live in Mi. I usually don't post much but, I just saw your post and it seems so much like I felt in the beginning. I was given similar devastating news. Its Quite a shock but, you'll find much better information here in this group than you will from your Doctor.

My first Doc said I had 3 years my second Dr said I could live 30 yrs!!! I don't believe either of them. I do know I will now live every day to the fullest and that's exactly what I am doing. I now think it is all a blessing because I don't take things for granted as I once did an am able to enjoy each day weather I am on a tropical Island or setting here on the couch.

People here will tell you there is no DATE STAMP on your butt and that's true. I think one of the best things I learned was that O2 is your best friend and enabler not your enemy.

I think my long hose is my enemy though. LOL If you are on O2 you know what I mean.

Everyone here would like to get to know you better. Like, are you on O2, how many liters, what meds you are taking etc. Again Welcome Aboard

Subject: A I.Pulmonary Fibrosis NewbieTo: breathe-support Date: Saturday, January 30, 2010, 11:44 AM

Hello Ladies and Gents..... I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis. I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing. Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY. That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have. You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the

doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is. So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul ! Thanks, Mike DailingCarlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Hello Mike, I got that same prognosis a little over a year ago. After going to an IPF Center of Excellence I found that I wasn't that bad. I believe I can live for many years yet. This is a great group and they have so much knowledge. Welcome,Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia IdahoSubject: A I.Pulmonary Fibrosis NewbieTo: breathe-support Date: Saturday, January 30, 2010, 8:44 AM

Hello Ladies and Gents.....

I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis.

I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing.

Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY.

That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have.

You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is.

So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul !

Thanks,

Mike Dailing

Carlsbad, Calif. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Newbie Mike, You've found the right

place!!Sorry you need us!

Find yourself a really good teaching hospital ( preferably a PF center

of Excellence)

and get an appointment. You need way more than just a CT to get that

diagnosis.

You need a  HRCT,  PFT's, maybe a biopsy but not just a CT.

Don't give up at all...find a doc who is an expert in...Interstitial

Lung Diseases.

Keep asking us questions...someone here will have the answers!

You have to become your own advocate.

Z fibriotic NSIP/05

Z 66, fibriotic NSIP/05/PA

And

“mild” PH/10/07

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

 

 

Mike Dailing wrote:

 

Hello Ladies and Gents.....

 

I'm Mike Dailing, of Carlsbad, California... and I'm presuming

(not assuming) I'm among fellow patients... for 'incurable' Idiopathic

Pulmonary Fibrosis.

 

I don't know much... other than the "Shock of my life" one week ago was

when My Veterans Administration Doctor told me "you have 24 months" to

live.   All that was done off of ONE... yes (1) ONE CT Scan !  Without

any other testing.  

 

Anyways.. I'm glad to be amongst the best here.. and hope I can share

and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm

NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO

WAY.

 

That said.. I'll need to have a Lotta input from my fellow Pulmonary

patients.. as well as providing the information I have. 

 

You know, I don't know if this can be beat.   I have strong Ideas..

that I can disprove the doctors statements... In fact, prolong my

life.. WHATEVER the True Diagnosis is.

 

So, I'm hoping to share and participate the best way I can with my

Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul !

 

Thanks,

 

Mike Dailing

Carlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign

up now.

[Guest guest]

Mike,

Welcome to Breathe Support! I'm sorry you had reason to look for a group like this but since you did I'm glad you found us. This is a support group in the best sense of the word. We share a tremendous amount of information here but many of us also share other aspects of our lives. Don't be overwhelmed by the volume of posts, take it a little bit at a time. Read what you want and consider what may be of use to you. We're here to help and support.

I am appalled at the way your diagnosis was presented to you. I wish I could say I am surprised but unfortunately we've all heard this type of scenario before. I would strongly suggest getting to a university medical center with an interstitial lung disease specialists. You can start here (www.ipfnet.org) though there are many others across the nation.

You desperately need more information about your illness and what your options are. You don't mention how old you are. Has anyone talked about lung transplant? or about testing you for an auto-immune disorder? enrolling in a drug or treatment trial? Have they done a pulmonary function test and a 6 minute walk? Are you on oxygen?

Stay around Mike and ask whatever questions come to mind. We're glad you're here!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: breathe-support Sent: Sat, January 30, 2010 11:44:20 AMSubject: A I.Pulmonary Fibrosis Newbie

Hello Ladies and Gents..... I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis. I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing. Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY. That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have. You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the

doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is. So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul ! Thanks, Mike DailingCarlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Beth,

It is so interesting to hear these stories about what doctors are telling new patients. I had been seeing a local doctor for almost three years, had the PFT's done each year and never once did I do a six minute walk. I didn't even know there was such a thing until I went to the University of Chicago and it was one of the first tests I had done......just another reason to get to a pulmonary specialty group. A bonus is to find a group like this where the information we share is such a blessing.

Stay safe and out of that snow!

Patti Indianapolis PF 2007

[Guest guest]

Mike

Then by your doctor's message I guess I'm dead and have been for at

least 7 months or maybe 2-3 years. I don't know how long ago he would

say I died. Funny thing is that I've been up and about and getting ready

to drive myself a thousand miles away and.....

The first thing is a recommendation that you go to a teaching hospital

with an Interstitial Lung Disease center. UCLA and USF are two that

would come to mind in your area although I personally would head to

National Jewish in Denver if I lived on the west coast.

Second, while no one can tell you how long you'll live (frankly, they

never could before the diagnosis either), I am here to tell you that

life with PF can be very good. You can make it the best time of your

life regardless of its length. Thats what hopefully we can help you do.

>

>

> Hello Ladies and Gents.....

>

>

>

> I'm Mike Dailing, of Carlsbad, California... and I'm presuming (not

assuming) I'm among fellow patients... for 'incurable' Idiopathic

Pulmonary Fibrosis.

>

>

>

> I don't know much... other than the " Shock of my life " one week ago

was when My Veterans Administration Doctor told me " you have 24 months "

to live. All that was done off of ONE... yes (1) ONE CT Scan !

Without any other testing.

>

>

>

> Anyways.. I'm glad to be amongst the best here.. and hope I can share

and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm

NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO

WAY.

>

>

>

> That said.. I'll need to have a Lotta input from my fellow Pulmonary

patients.. as well as providing the information I have.

>

>

>

> You know, I don't know if this can be beat. I have strong Ideas..

that I can disprove the doctors statements... In fact, prolong my life..

WHATEVER the True Diagnosis is.

>

>

>

> So, I'm hoping to share and participate the best way I can with my

Fellow group " Breath-Support " partners.... I'm IN for the LONG Haul !

>

>

>

> Thanks,

>

>

>

> Mike Dailing

>

> Carlsbad, Calif.

>

> _________________________________________________________________

> Your E-mail and More On-the-Go. Get Windows Live Hotmail Free.

> https://signup.live.com/signup.aspx?id=60969

>

[Guest guest]

Welcome Mike!!

Yes, by all means, fire away with your questions. I did not get any real

answers until I went to a center of excellance (found through IPFNET). There

are the spirometry tests (PFTs, 6-minute walk test), exercise tolerance test and

the GERD test and the blood gas test that all help narrow down your " flavor " of

interstitial lung disease (there are some 150 kinds). I took copies of all of

my blood tests, CTs and x-rays with me when I went. It helps the specialists

nail down what you have and how quickly it is or is not progressing. The next

thing that comes along (sometimes) is the VAT (video assisted) biopsy.

Depending on the findings there will or will not be medications. Often

pulmonary rehab is recommended. Until you know the answer to the question " what

kind of PF or Interstitial Lung Disease do I have " you will not be able to

really do too much more. Most of us have purchased oximeters off the internet

(FDA approved only) and are on some kind of oxygen therapy (lots of options

there). You will find more help at this site than anywhere else. Many have

applied for and gotten disability through Social Security. There have been

others that have gotten either a single lung transplant, partial lung or double

lung transplant. Much of that information is available through the searchable

database of posts and files. It can be difficult using the search engine, but

the information is there.

Best of luck... and once again, welcome.

Stefani 61 year old Utahn

ILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

>

>

> Hello Ladies and Gents.....

>

>

>

> I'm Mike Dailing, of Carlsbad, California... and I'm presuming (not assuming)

I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis.

>

>

>

> I don't know much... other than the " Shock of my life " one week ago was when

My Veterans Administration Doctor told me " you have 24 months " to live. All

that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing.

>

>

>

> Anyways.. I'm glad to be amongst the best here.. and hope I can share and

receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to

let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY.

>

>

>

> That said.. I'll need to have a Lotta input from my fellow Pulmonary

patients.. as well as providing the information I have.

>

>

>

> You know, I don't know if this can be beat. I have strong Ideas.. that I can

disprove the doctors statements... In fact, prolong my life.. WHATEVER the True

Diagnosis is.

>

>

>

> So, I'm hoping to share and participate the best way I can with my Fellow

group " Breath-Support " partners.... I'm IN for the LONG Haul !

>

>

>

> Thanks,

>

>

>

> Mike Dailing

>

> Carlsbad, Calif.

>

> _________________________________________________________________

> Your E-mail and More On-the-Go. Get Windows Live Hotmail Free.

> https://signup.live.com/signup.aspx?id=60969

>

[Guest guest]

Mike,

I don't know your situation, but I want to advise you not to put yourself entirely in the hands of your pulmonologist. Take control of your treatment and consider all recommendations they give you regarding drugs, biopsy, and other treatments thoroughly and don't be afraid to ask questions of this group before making a decision. Of course, the recommendation to take O2 need not be questioned, if you need it you need it, and it can only help. I highly recommend getting into a Pulmonary Rehab class as you will learn a lot about yourself there.

Bob, 70, IPF 1/09, 5Bypasses 7/01

Hello Ladies and Gents..... I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis. I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing. Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY. That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have. You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the

doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is. So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul ! Thanks, Mike DailingCarlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Patti

It's always a reminder how little most pulmonologists know about PF and

how little most cardiologists know about PH and how little most doctors

in general know about PF, PH, and Autoimmune diseases. When we search

for specialists we must not search just for those in the general field,

but those with the specific knowledge relevant to us. I even asked

specific questions long ago back to my VATS of the surgeon. I didn't

want to know just his history with Thoracic surgery, but asked how many

VATS he had done and how many had complications. The answer was 120 or

so and one complication and she died and it was a few years back and he

never should have done her and now will not do a patient as advanced as

she was.

>

> Beth,

> It is so interesting to hear these stories about what doctors are

telling new patients. I had been seeing a local doctor for almost three

years, had the PFT's done each year and never once did I do a six minute

walk. I didn't even know there was such a thing until I went to the

University of Chicago and it was one of the first tests I had

done......just another reason to get to a pulmonary specialty group. A

bonus is to find a group like this where the information we share is

such a blessing.

>

> Stay safe and out of that snow!

>

> Patti Indianapolis PF 2007

>

[Guest guest]

mike

welcome

sorry you need us

but glad you found us

in addition to the teaching hospital with a dept that specializes in interstitial lung diseases

you need an oximeter

the thing you put on your finger to check your oxygen levels

i purchased mine on line from nonin

some people will provide you with a link for a less expensive one

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: A I.Pulmonary Fibrosis NewbieTo: Breathe-Support Date: Saturday, January 30, 2010, 3:25 PM

Mike,

Welcome to Breathe Support! I'm sorry you had reason to look for a group like this but since you did I'm glad you found us. This is a support group in the best sense of the word. We share a tremendous amount of information here but many of us also share other aspects of our lives. Don't be overwhelmed by the volume of posts, take it a little bit at a time. Read what you want and consider what may be of use to you. We're here to help and support.

I am appalled at the way your diagnosis was presented to you. I wish I could say I am surprised but unfortunately we've all heard this type of scenario before. I would strongly suggest getting to a university medical center with an interstitial lung disease specialists. You can start here (www.ipfnet.org) though there are many others across the nation.

You desperately need more information about your illness and what your options are. You don't mention how old you are. Has anyone talked about lung transplant? or about testing you for an auto-immune disorder? enrolling in a drug or treatment trial? Have they done a pulmonary function test and a 6 minute walk? Are you on oxygen?

Stay around Mike and ask whatever questions come to mind. We're glad you're here!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Mike Dailing <mikedailing@ hotmail.com>To: breathe-support@ yahoogroups. comSent: Sat, January 30, 2010 11:44:20 AMSubject: A I.Pulmonary Fibrosis Newbie

Hello Ladies and Gents..... I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis. I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing. Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY. That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have. You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the

doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is. So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul ! Thanks, Mike DailingCarlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Mike, sorry you have to be here, but welcome to the best Air Family in the world. They are full of information, and the best thing is WE GET IT! Vent all you need to. As everyone says, there is no expiration date stamped anywhere on our bodies.Kathy ILDHypersensitivity pneumonitis 3/08Subject: A I.Pulmonary Fibrosis NewbieTo: breathe-support Date: Saturday, January 30, 2010, 8:44 AM

Hello Ladies and Gents.....

I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis.

I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing.

Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY.

That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have.

You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is.

So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul !

Thanks,

Mike Dailing

Carlsbad, Calif. Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.

[Guest guest]

Mike....only one person I know gives out the time you go, and he is not wearing a white jacket.

I was diagnosed with IPF about two weeks ago and my majic number is 32 months... trying for lung transplant listing

Rick Thacker

cartersville, georgia RT

PS ... I say my prayers, the disease gets no more pity or tears from me or my family, either way I fight smiling

To: breathe-support Sent: Sat, January 30, 2010 11:44:20 AMSubject: A I.Pulmonary Fibrosis Newbie

Hello Ladies and Gents..... I'm Mike Dailing, of Carlsbad, California.. . and I'm presuming (not assuming) I'm among fellow patients... for 'incurable' Idiopathic Pulmonary Fibrosis. I don't know much... other than the "Shock of my life" one week ago was when My Veterans Administration Doctor told me "you have 24 months" to live. All that was done off of ONE... yes (1) ONE CT Scan ! Without any other testing. Anyways.. I'm glad to be amongst the best here.. and hope I can share and receive as well other's opinions ideas thoughts.. AS FOR ME.. I'm NOT going to let this Sit! Not the Diagnosis.. NOR the prognosis.. NO WAY. That said.. I'll need to have a Lotta input from my fellow Pulmonary patients.. as well as providing the information I have. You know, I don't know if this can be beat. I have strong Ideas.. that I can disprove the

doctors statements.. . In fact, prolong my life.. WHATEVER the True Diagnosis is. So, I'm hoping to share and participate the best way I can with my Fellow group "Breath-Support" partners.... I'm IN for the LONG Haul ! Thanks, Mike DailingCarlsbad, Calif.

Your E-mail and More On-the-Go. Get Windows Live Hotmail Free. Sign up now.