Hi Everyone

March 1, 2009

Hi my name IS Card

I was Diagonsed with The Begining of Pulmornary Fibrosis.

In Sept Of 2008 and I HAVE A FEW Question's? of concern's

I feel terrible all the time. I saw my Pulmornary Doctor on wedesday

I Asked him what stage of Fibrosis I had said I DON'T KNOW

asked what he thought how long I had to live he said two early to

tell did not like his bed side matter you allready getting your

coffin

ready he said to me. he said that oxygen level looks good so far

I have Sleep apena I am getting my mask on wedesday.also yelling at

me about my weight. I UNDERSTAND that I put weight on also I have

had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the

hosiptal yesteday i feel so lightheaded and dizzy hardley can see

and weak and tired

that said the some thing as alway's that it is Veritgo.and they gave

me Myccline for dizzyness in which it is does nothing,I feel very

weakand tired I sufferd with chronic sunises and asthma and gerd

before I got this monster. I dont like my pulmornary how talks to me

like there is nothing wrong with me knowing what he has found and the

way i feel.

plus my racing heart.my pulse is always 130 with exercise or walking

any type of exercise.sitting is 107 or 90s please let me know what

you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

March 2, 2009

Hi Kay, and welcome to our support group and Air Family. We are all sorry you need this kind of support but we have all been where you are "WE GET IT" and we are here for you. Feel free to ask questions rant,scream or whatever needs to happen. Most of us do have GERD and there is not any positive proof that GERD is a cause--could be. There are so many things that could cause it. For myself knowing I have it, once I understood all that was involved, I have mainly just dealt with the living part.I have IPF and really don't care where it came from. That would waist my precious time chasing it down. Some just have the need to know. I figure I can't change it so why beat my head against a wall..The best advise I can give is to not panic, focus on living and doing the things that truly make you happy. You are young for this disease but we have a LOT of members around your age. I am 66 (32 in my mind) and am 5 years with this monster. I am on 02 24/7 but I am living--yes a pretty good quality of life....NO I take that back I have a GREAT quality of life. To watch my husband of 41 years waiting and taking care of me puts good quality right on top.. LOL little things don't bother me and yet it's the little things that keep me happy. God Bless you with strength to keep on keepin on.Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." hi , my name is kay, im a 52 female ,from penna. i just took a trip to the hospital for chest pain and had a ct with contrast, they were looking for a pe. what they found was chronic intertinal pulmonary fibrosis. what a shock. i go to a pulmonogist next week. what is next?? i feel like i'm in a nightmare and this can't be true. I welcome any advice anyone could give,i also have GERD and have had it for 15 years. Does anyone think there is a connection between the two???thank god for this group kay From: Dyane Billings <dyane.billings (AT) ball-mcgraw (DOT) com>To: Breathe-Support Sent: Sunday, March 1, 2009 8:52:58 PMSubject: Re: Hi Everyone, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones.On Sun, Mar 1, 2009 at 4:11 PM, dcard2008 <dcard2008 (AT) yahoo (DOT) com> wrote:Hi my name IS Card I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern's I feel terrible all the time. I saw my Pulmornary Doctor on wedesday I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early totell did not like his bed side matter you allready getting your coffin ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling at me about my weight. I UNDERSTAND that I put weight on also I have had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the hosiptal yesteday i feel so lightheaded and dizzy hardley can see and weak and tired that said the some thing as alway's that it is Veritgo.and they gave me Myccline for dizzyness in which it is does nothing,I feel very weakand tired I sufferd with chronic sunises and asthma and gerd before I got this monster. I dont like my pulmornary how talks to me like there is nothing wrong with me knowing what he has found and the way i feel.plus my racing heart.my pulse is always 130 with exercise or walking any type of exercise.sitting is 107 or 90s please let me know what you guy;s think I am on cardizem 300 and Linspriol for blood pressure.-- Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest HA HA

March 2, 2009

ï»¿

Kay/Peggy... Hi from me too Kay and welcome to our board. You will learn a lot of things here.

Peggy... I'm with you. I really don't care anymore "how" I got IPF. It is what it is.

I've always been a 'need to know' person but since this dx I've really accepted what I cannot change. I don't watch the numbers, just the changes.

Hannah came over Sat. "just because she misses us". Ahhhhh. (for those who don't know Hannah is our 17 y/o granddaughter who we are especially close to...we helped raise her and she's more like a daughter to us).

It's the first time she has been allowed to drive this far. About 30+ miles by herself. She spent the night and it was like a ray of sunshine came through the door with her!

Imagine, a 17 y/o girl would rather come here than be w/her friends. Makes me tear up. That little thing is huge isn't it.

I'm barely able to think about Steve and now Sherry. She and I wrote each other a lot and I can't believe her dying!

Blessings to you both.

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

ï¿½Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions.ï¿½ I take prilosec for GERD and use my cpap religeously.ï¿½ And Im claustraphobic!ï¿½ You also need an oximeter as your sats are probably dropping when your hr is so high.ï¿½ Its trying to push more o2 faster since you are sob.ï¿½ Hope this helps.ï¿½ I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008ï¿½<dcard2008 (AT) yahoo (DOT) com>ï¿½wrote:

Hi my name IS Cardï¿½I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern'sï¿½I feel terrible all the time. I saw my Pulmornary Doctor on wedesdayï¿½I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early totell did not like his bed side matter you allready getting yourï¿½coffinï¿½ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling atï¿½me about my weight. I UNDERSTAND that I put weight on also I haveï¿½had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to theï¿½hosiptal yesteday i feel so lightheaded and dizzy hardley can seeï¿½and weak and tiredï¿½that said the some thing as alway's that it is Veritgo.and they gaveï¿½me Myccline for dizzyness in which it is does nothing,I feel veryï¿½weakand tired I sufferd with chronic sunises and asthma and gerdï¿½before I got this monster. I dont like my pulmornary how talks to meï¿½like there is nothing wrong with me knowing what he has found and theï¿½way i feel.plus my racingï¿½heart.myï¿½pulse is always 130 with exercise or walkingï¿½any type of exercise.sitting is 107 or 90s please let me know whatï¿½you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

--ï¿½Dyane 53 ï¿½Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest ï¿½HA HA

March 2, 2009

Hi ,I'm sorry you are dealing with so many things at once. My pulmo has been kind of like yours, but I believe it is because PF can stabilize for a very long time or be progressive suddenly. He just wanted me to do the best I could for where I'm at.He did tell me when he thought I had entered end stage without hesitation though. My heart rate is also high and I take cardizem also.I had a hysterectomy also and I know what a battle that is. The good news is that you will level out , but it's hard I know.You are dealing with a lot of information that is difficult to process.The wonderful people here will be a wealth of information as well as strong support.God Bless you Citrus Heights, CaliforniaCOPD-Asthma LIP-2006NHL-1999SJS-1994New LifeFeed the hungryFree Mamograms Subject: Hi EveryoneTo: Breathe-Support Date: Sunday, March 1, 2009, 3:11 PM

Hi my name IS Card

I was Diagonsed with The Begining of Pulmornary Fibrosis.

In Sept Of 2008 and I HAVE A FEW Question's? of concern's

I feel terrible all the time. I saw my Pulmornary Doctor on wedesday

I Asked him what stage of Fibrosis I had said I DON'T KNOW

asked what he thought how long I had to live he said two early to

tell did not like his bed side matter you allready getting your

coffin

ready he said to me. he said that oxygen level looks good so far

I have Sleep apena I am getting my mask on wedesday.also yelling at

me about my weight. I UNDERSTAND that I put weight on also I have

had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the

hosiptal yesteday i feel so lightheaded and dizzy hardley can see

and weak and tired

that said the some thing as alway's that it is Veritgo.and they gave

me Myccline for dizzyness in which it is does nothing,I feel very

weakand tired I sufferd with chronic sunises and asthma and gerd

before I got this monster. I dont like my pulmornary how talks to me

like there is nothing wrong with me knowing what he has found and the

way i feel.

plus my racing heart.my pulse is always 130 with exercise or walking

any type of exercise.sitting is 107 or 90s please let me know what

you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

March 3, 2009

hi sher and everyone thank you for the warm welcome. i believe there is power in numbers ,, have a great day

Kay

To: Breathe-Support Sent: Monday, March 2, 2009 7:51:41 PMSubject: Re: Hi Everyone

Hi Sher, I am so glad that your little Hannah brought her sunshine to you this weekend. Just when you needed it! Margaret

From: Sher Bauman <bofus (AT) wbcable (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Monday, March 2, 2009 12:42:05 PMSubject: Re: Hi Everyone

ï»¿ Kay/Peggy... Hi from me too Kay and welcome to our board. You will learn a lot of things here.

Peggy... I'm with you. I really don't care anymore "how" I got IPF. It is what it is.

I've always been a 'need to know' person but since this dx I've really accepted what I cannot change. I don't watch the numbers, just the changes.

Hannah came over Sat. "just because she misses us". Ahhhhh. (for those who don't know Hannah is our 17 y/o granddaughter who we are especially close to...we helped raise her and she's more like a daughter to us).

It's the first time she has been allowed to drive this far. About 30+ miles by herself. She spent the night and it was like a ray of sunshine came through the door with her!

Imagine, a 17 y/o girl would rather come here than be w/her friends. Makes me tear up. That little thing is huge isn't it.

I'm barely able to think about Steve and now Sherry. She and I wrote each other a lot and I can't believe her dying!

Blessings to you both.

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

ï¿½Re: Hi Everyone

, Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions.ï¿½ I take prilosec for GERD and use my cpap religeously.ï¿½ And Im claustraphobic!ï¿½ You also need an oximeter as your sats are probably dropping when your hr is so high.ï¿½ Its trying to push more o2 faster since you are sob.ï¿½ Hope this helps.ï¿½ I love my doctors wish I could share them with some of you that have horrible ones.

On Sun, Mar 1, 2009 at 4:11 PM, dcard2008ï¿½<dcard2008 (AT) yahoo (DOT) com>ï¿½wrote:

Hi my name IS Cardï¿½I was Diagonsed with The Begining of Pulmornary Fibrosis.In Sept Of 2008 and I HAVE A FEW Question's? of concern'sï¿½I feel terrible all the time. I saw my Pulmornary Doctor on wedesdayï¿½I Asked him what stage of Fibrosis I had said I DON'T KNOWasked what he thought how long I had to live he said two early totell did not like his bed side matter you allready getting yourï¿½coffinï¿½ready he said to me. he said that oxygen level looks good so farI have Sleep apena I am getting my mask on wedesday.also yelling atï¿½me about my weight. I UNDERSTAND that I put weight on also I haveï¿½had a Hysteromty a

full one that I AM ALSO HORMOMEL I WENT to theï¿½hosiptal yesteday i feel so lightheaded and dizzy hardley can seeï¿½and weak and tiredï¿½that said the some thing as alway's that it is Veritgo.and they gaveï¿½me Myccline for dizzyness in which it is does nothing,I feel veryï¿½weakand tired I sufferd with chronic sunises and asthma and gerdï¿½before I got this monster. I dont like my pulmornary how talks to meï¿½like there is nothing wrong with me knowing what he has found and theï¿½way i feel.plus my racingï¿½heart.myï¿½pulse is always 130 with exercise or walkingï¿½any type of exercise.sitting is 107 or 90s please let me know whatï¿½you guy;s think I am on cardizem 300 and Linspriol for blood pressure.

--ï¿½Dyane 53 ï¿½Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF 07, lipodermatosclerosi s 08, and Ive forgotten the rest ï¿½HA HA

March 3, 2009