Re: newly diagnosed with ipf

[Guest guest]

... welcome to our site and our "air-family"... I remember how I felt when I was dx (diagnosed) over 2 years ago. You, like I was, are lucky to find this board so quickly. I found us in three days.

Everything you want to know you can probably find here. Others just like yourself. There are those who have suffered the familial PF as well. Any question you have, just ask, someone here will have an answer for you. There are files on the home page to check out too. There is actually more information here than you can take in, in one day.

I'm so sorry you are here , it's always sad to welcome a newbie but you are in the right place! Holding hands is what we do best! We encircle the world. There are members here from Australia, England, India, Scotland, Alaska, Canada and I'm forgetting others I know. We hold each others hands all around the world! Grab on.

I'm sorry about your mom. That is not a pleasant memory you are left with.

Where do you live? How old are you and how were you dx?

We'll get more acquainted as we go along and others will be responding to you as well.

Hang on . We're here for you.

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

newly diagnosed with ipf

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

Hi

I'm stretching my hand out from England. I'm sorry you had to find us, but I'm glad you did.

This is a great site for venting, information and just general companionship. We understand.

I look forward to reading your posts

Love Ze (38) Dermatomyositis, PF (prob nsip) etc for years, PH 2008

>> Help,> > I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.> > >

[Guest guest]

,

Welcome to the board! I am truly sorry that you have reason to seek us out though I'm glad that we're here to offer support. You've already been down this road with your Mom so I'm sure you're feeling thoroughly overwhelmed and probably not a little frightened. You've reached a group of people who truly "get it". We're all in this together.

I was diagnosed two years ago after having been misdiagnosed and mis-treated for a year and a half. Being told I was allergic to my pets, had asthma, had bronchitis etc etc etc. It sounds as though you've had a similar experience.

How old are you ? I'm 48, (well for another three weeks or so anyhow) and I was diagnosed at 46. We have all ages on the board, from 30's to over 80 so we're a real mix.

In the coming days, weeks, months you'll have lots of tests, doctors app'ts, and decisions that need to be made. Please know that we're here to help in whatever way we can. Remember that our sponsoring organization, the Pulmonary Fibrosis Foundation (www.pulmonaryfibrosis.org) is a great source of information and resources. Don't hesitate to given them a call. And remember that you've got a whole bunch of new friends right here pulling for you!

Beth

Moderator Breathe-Support

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

newly diagnosed with ipf

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

Welcome,

At age 79 I'm the grandaddy of trhe group. Also the least informed. I was dx three years ago with IPF, confirmed by biopsy a month ago. In that time I have remained stable, mostly for the reason that the doctor was hands off and never prescribed all those medicines that have harmed some members of the board.

You will, as I did, get a lot of useful information and help from this group. Many members have years of experience dealing with this disease, as well as other diseases.

I will say that one learns how to live with it and how to enjoy life each day regardless of how difficult things may be.

Jack

79/UIP - IPF/06/05 Maine

newly diagnosed with ipf

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

Hi , I am Mayleen (dragonflymcs) I have Interstitial Lung Disease, but I do not know what type yet. Nice to hear from you, sorry it had to be under these circumstances. The only thing I have is an inhaler. On that note, please tell me what kind of inhaler you have. I have Pro-Air HFA. There are currently inhalers on the market which are going out of production and that may be your problem. The older inhaler have a propellant which is a Lung Irritant. The New ones are HFA, find out what type you have. I hope this helps !! Sorry about your Mom. How old are you ?

God Bless !!

dragonflymcs

Mayleen 02/07 ILD / MCS/ Fibro/ RADS/ TMJD/ IRD +14

< Click on me !!

newly diagnosed with ipf

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

Hi ,

I'm so sorry at your dx, but you have found a great

group of caring, generous and knowledgeable people

here at this board who will gladly share their

experiences and hold your hand as theirs have been

held.

We all have the common denominator---IPF in its many

forms.

For me, I am 58 years old and like you spent 6 months

or more being treated for adult onset asthma.

Worsening symptoms and a new doctor who performed many

tests changed that dx to IPF and added sarcoidosis

last month. Everyone is right---do not panic; many of

us here have had this disease for a long time. My

mother is a 20 year survivor of chronic bronchitis and

copd. Not the same, but so similar in her physical

condition, that I use her as a compass to keep me on a

correct mind set. I don't post much because I don't

have a great way with words like some (you will come

to look forward to many of their posts) but know that

all of us are here for you when you need us!

Feel free to email anytime!

Roxanne age 58 SC

Asthma/PF 2007

IPF/Sarcoid 2008

--- keith andersen wrote:

> Help,

>

> I was diagnosed with IPF 2 days ago and am still in

> shock as for 6 months I'd been told this was asthma,

> allergies, etc.  None of the inhalers I  have been

> using seemed to present with any benefit.  My mother

> passed away from IPF several years ago and I

> remember it was a horrible process for her.  I could

> use some hand holding.

>

>

>

>

>

>

>

[Guest guest]

, you found a good place for info and support. And luckily you

found this site early in your diagnosis. Some of us spent years alone

with this monster before finding a support group.

I too was treated for allergies for 2 years before being properly

diagnosed so I know the feeling of shock you're experiencing. It can

take a long while to come to terms with this so allow yourself the

time to grieve but always know that we're here to help you.

The problem with inhalers for allergies is that they are for a

different animal. We have a restrictive lung disease that is not the

same as asthma.

You are going to meet some incredible folks here who will offer you so

much guidance and friendship that you will instantly know you're no

longer alone in your fight.

Please tell us more about yourself, and my condolences on the loss of

your Mother. I lost my own to scleroderma 14 years ago and it is still

my constant heartache.

Hugs!!!

Babs in Texas

Age 47 DX with PF due to lupus/scleroderma/rheumatoid arthritis 11/99

Also have raynauds, sjogrens, and crohns.

>

> Help,

>

> I was diagnosed with IPF 2 days ago and am still in shock as for 6

months I'd been told this was asthma, allergies, etc. None of the

inhalers I have been using seemed to present with any benefit. My

mother passed away from IPF several years ago and I remember it was a

horrible process for her. I could use some hand holding.

>

>

>

[Guest guest]

Hi ,

Welcome to the group!! For hand holding, you have come to the right place!! I am here if you need me!!

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: Re: newly diagnosed with ipfTo: Breathe-Support Date: Sunday, June 22, 2008, 12:26 PM

Hi

I'm stretching my hand out from England. I'm sorry you had to find us, but I'm glad you did.

This is a great site for venting, information and just general companionship. We understand.

I look forward to reading your posts

Love Ze (38) Dermatomyositis, PF (prob nsip) etc for years, PH 2008

>> Help,> > I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.> > >

[Guest guest]

Hi ,

Glad you found us--but wish it could have been under different circumstances. The "board" members here will definately take your hand and help you through a lot of your fears and questions. I, also was treated for asthma, allergies, flu and finally after 1 1/2 years found out I had PF--I was in total shock--just knowing I was going to die immediately

but after the iniatial shock and after joining this board I found that the fight has just begun--

we are not going to die tomorrow and I am learning to take care of myself by understanding the disease as much as possible. You will probably get alot of information from this board as we are living and learning from each--it helps me to ask more intelligent questions and understand answers when I go to the DR.

Are you married, kids, etc.--do you have family to help if you need it? If you have any questions or need to "talk"----just start typing and you will get a response?

G. UIP/IPF 5/07 AZ.

Subject: newly diagnosed with ipfTo: Breathe-Support Date: Sunday, June 22, 2008, 4:43 PM

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

Thank you . I can't read the responses without crying. I will contact you and others as I am able to make sense out of this and put together reasonable questions. Much thanks,

From: keith andersen <drkja2003yahoo (DOT) com>Subject: newly diagnosed with ipfTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 22, 2008, 4:43 PM

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

,

I know the feelings you are going through--I actually went out in the garage

sat in the car and cried as I thought the world just ended and I would be dead in a week.

After I got over that --I found that the rest of the life we have to live means we will just take better care of ourselves. If you feel you need someone to talk to some one --I would be happy to help --my phone # att cell, and I can call back if you wish.

Take care ---

G.

From: keith andersen <drkja2003yahoo (DOT) com>Subject: newly diagnosed with ipfTo: Breathe-Support@ yahoogroups. comDate: Sunday, June 22, 2008, 4:43 PM

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

[Guest guest]

, I wanted to let you know that

several people here have family

related IPF. There is research going on in regard to familial IPF.

Brett may be able to give you more information.

You need to get information, use this group, read previous posts.

Search on the data bases and links provided at the bottom of the posts.

We are here for you and for your wife.

We are all learning how to live our lives with PF. That life may be

different but it's life!!!

So, try not to panic.(.I know that that is easier said than done)

We've all" been there done that" and totally "get it"

Z fibriotic NSIP/05

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

keith andersen wrote:

Help,

I was diagnosed with IPF 2 days ago and am still in shock as for 6

months I'd been told this was asthma, allergies, etc. None of the

inhalers I have been using seemed to present with any benefit. My

mother passed away from IPF several years ago and I remember it was a

horrible process for her. I could use some hand holding.

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.1/1513 - Release Date: 6/22/2008 7:52 AM

[Guest guest]

,welcome to the groupfirst of all I can tell you not to panic but I won'tbecause that is the first stage in learning to deal with your situationit will pass, trust me , it may take several months but it willnow on your familial IPF I know what you are feeling because I went through the same thing with my mother from her first biopsy to her lung transplant till she passed away in oct 20046 years she managed to live with this monster and as you know it was hard to watch her slowly diebut each individual is different you can live a full life with this disease, just because my mother diedin six years from dx. doesn't mean Im going to. and that goes for you too as far as the study's go they have made quit a bit of progress in identifying the gene's that are passed down from generation to generation there are two mutated gene's that have been identified in the DNA of familial IPF patientsthat often show up . here is a link that will give you some more info and a number to call for all of your familial questionsI have called it and the lady is very nice I can't remember her name though , but she was helpfulhttp://www.coalitionforpf.org/aboutus/pressroom/pr021908.asphttp://www.nationaljewish.org/disease-info/diseases/ild/progs/genetic.aspxGOOD LUCKBRETT BOWSER FAMILIAL UIP/IPF 11/07 40 MI., I wanted to let you know that several people here have familyrelated IPF. There is research going on in regard to familial IPF.Brett may be able to give you more information.You need to get information, use this group, read previous posts.Search on the data bases and links provided at the bottom of the posts.We are here for you and for your wife.We are all learning how to live our lives with PF. That life may be different but it's life!!!So, try not to panic.(.I know that that is easier said than done)We've all" been there done that" and totally "get it" Z 64, fibriotic NSIP/o5/PAAnd “mild” PH/10/07 and Reynaud’s too!!No, NSIP was not self-inflicted…I never smoked!Potter, reader,carousel lover and MomMom to Darahand Sara “I’m gonna be iron like a lion in Zion” Bob MarleyVinca Minor-periwinkle is my flower keith andersen wrote:Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.1/1513 - Release Date: 6/22/2008 7:52 AM

brett bowserbrett@...

[Guest guest]

Thank you for your words Brett. I will follow up with the leads.Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.No virus found in this incoming message.Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.1/1513 - Release Date: 6/22/2008 7:52 AM brett bowserbrettvectordist (DOT) com

[Guest guest]

,

I'm so very sorry that you had to face this monster. Don't assume that everything will be the same as your mom. Have you looked into the research that is going on with familial IPF?

I use nebulizers instead of inhalers. Much more effective.

I'm glad that you landed here. Believe me, we all understand the fright of those first few days after diagnosis. Just take care of yourself and be active in managing your disease.

Hugs, Joyce DaltonPulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16

>> Help,> > I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.> > >

[Guest guest]

Thank you Joyce for the kind words. Your right, all I knew about PF was what I had experienced with my mom and so imagined 6 m. mortality. I see from the recent posts that many people live long lives following DX. Of course I am concerned about the possibility of passing this along to my young daughters and will research this aspect once things get a bit under control. Next week I am going to Reno, NV to see another pulmonologist and take my prepared questions which will include tx possibilities. I will bring up the issue of inhalers vs nebulizers. Thank you for your support and info. It really does help.From:

Joyce Subject: Re: newly diagnosed with ipfTo: Breathe-Support Date: Tuesday, June 24, 2008, 6:15 PM

,

I'm so very sorry that you had to face this monster. Don't assume that everything will be the same as your mom. Have you looked into the research that is going on with familial IPF?

I use nebulizers instead of inhalers. Much more effective.

I'm glad that you landed here. Believe me, we all understand the fright of those first few days after diagnosis. Just take care of yourself and be active in managing your disease.

Hugs, Joyce DaltonPulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my

hands. Isaiah 49: 15-16

>> Help,> > I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.> > >

[Guest guest]

Brett... thanks for this site. I finally sent off an email to them for information/questions.

There is naturally a part of me that doesn't want to check into familial IPF but I can't bury my head in the sand any longer.

Hope you are doing well as can be. I watch the board carefully for a post from you.

My regards to your family and a hug to little Miss Sunshine!

MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there!

Re: newly diagnosed with ipf

,

welcome to the group

first of all I can tell you not to panic but I won't

because that is the first stage in learning to deal with your situation

it will pass, trust me , it may take several months but it will

now on your familial IPF

I know what you are feeling

because I went through the same thing with my mother

from her first biopsy to her lung transplant till she passed away in oct 2004

6 years she managed to live with this monster and as you know it was hard to watch her slowly die

but each individual is different you can live a full life with this disease, just because my mother died

in six years from dx. doesn't mean Im going to. and that goes for you too

as far as the study's go they have made quit a bit of progress in identifying the gene's

that are passed down from generation to generation

there are two mutated gene's that have been identified in the DNA of familial IPF patients

that often show up .

here is a link that will give you some more info and a number to call for all of your familial questions

I have called it and the lady is very nice I can't remember her name though , but she was helpful

http://www.coalitionforpf.org/aboutus/pressroom/pr021908.asp

http://www.nationaljewish.org/disease-info/diseases/ild/progs/genetic.aspx

GOOD LUCK

BRETT BOWSER

FAMILIAL UIP/IPF 11/07 40 MI.

, I wanted to let you know that several people here have familyrelated IPF. There is research going on in regard to familial IPF.Brett may be able to give you more information.You need to get information, use this group, read previous posts.Search on the data bases and links provided at the bottom of the posts.We are here for you and for your wife.We are all learning how to live our lives with PF. That life may be different but it's life!!!So, try not to panic.(.I know that that is easier said than done)We've all" been there done that" and totally "get it"

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

keith andersen wrote:

Help,I was diagnosed with IPF 2 days ago and am still in shock as for 6 months I'd been told this was asthma, allergies, etc. None of the inhalers I have been using seemed to present with any benefit. My mother passed away from IPF several years ago and I remember it was a horrible process for her. I could use some hand holding.

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 270.4.1/1513 - Release Date: 6/22/2008 7:52 AM

brett bowser

brettvectordist