Hi Everyone

November 25, 2008

,

We've missed you so! I know I, personally, have had the privilege of visiting with you recently, but it's nice to see you posting to the group! Hoping and praying, as always, that you are lead to the correct docs to treat your rebelling PSC, and get you on the other side of tx. Looking forward to happier, healthier times for BOTH of us.

Big hugs,

(MO)

P.S. I'll be sure to check the photos in case there are some I'm missing.

Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

November 25, 2008

,

We've missed you so! I know I, personally, have had the privilege of visiting with you recently, but it's nice to see you posting to the group! Hoping and praying, as always, that you are lead to the correct docs to treat your rebelling PSC, and get you on the other side of tx. Looking forward to happier, healthier times for BOTH of us.

Big hugs,

(MO)

P.S. I'll be sure to check the photos in case there are some I'm missing.

Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

November 25, 2008

,

We've missed you so! I know I, personally, have had the privilege of visiting with you recently, but it's nice to see you posting to the group! Hoping and praying, as always, that you are lead to the correct docs to treat your rebelling PSC, and get you on the other side of tx. Looking forward to happier, healthier times for BOTH of us.

Big hugs,

(MO)

P.S. I'll be sure to check the photos in case there are some I'm missing.

Traveling over the river or through the woods this holiday season? Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

March 1, 2009

>

> Hi and welcome. We're all sorry you had reason to look for

a group like this but since you did, we're glad you found us.

> It is impossible though for anyone here to predict how long you are

going to live or how the course of your illness will run. My first

suggestion would be to find a new pulmonary doctor, one that you feel

comfortable with and have confidence in. This will make a big

difference in your life all by itself.

>

> Many of us here understand the struggle to control our weight. You

are not alone in that. Where do you live? You will be best served by

finding a specialist in interstitial lung disease. He/she will

be more knowledgable about your specific disease than the average

pulmo.

>

> Please feel free to ask whatever questions you can think of. We're

here to help!

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

> Hi Beth thanks I am from springield Massachusetts

>thanks C

> ________________________________

> From: dcard2008

> To: Breathe-Support

> Sent: Sunday, March 1, 2009 6:11:16 PM

> Subject: Hi Everyone

>

> 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 1, 2009

...I use a cpap too and just wanted to let you know that if the mask you get "doesn't work" for you...request another.

I use the blue gel mask that covers the nose only. I couldn't tolerate the full face mask.

It was a bit hard to make the adjustment at first and now I'm glad to have it. I don't snore like I used to and my hubby appreciates that too. I breathe easier and sleep better. In fact I don't like being without it...like when I spend the night at my daughter's place I sometimes don't take it just for one night and then wish I had.

Drs are "supposed" to be cheerful I suppose but golly, if you don't like this guy, get another dr!

We learn very quickly here to be our own best advocate.

Have you had a good cardio workup to spot any trouble there?

Keep on keepin' on. Lots of help and support here.

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

Hi Everyone> > > 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 1, 2009

,

I lived in Massachusetts for 8 years when I was married. In Brewster on Cape Cod. I loved it there and I still miss it. Now I live in North Carolina.

There are several good teaching hospitals in Boston. Boston Medical Center has many doctors whose main clinical interest is interstitial lung disease. (that's what we have). I realize Springfield isn't right next door to Boston but it's close enough for you to be evaluated. Give it some thought. I hate to hear of someone who is so unhappy with their physician when it's such a critical thing we need!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, March 1, 2009 6:34:58 PMSubject: Re: Hi Everyone

>> Hi and welcome. We're all sorry you had reason to look for a group like this but since you did, we're glad you found us.> It is impossible though for anyone here to predict how long you are going to live or how the course of your illness will run. My first suggestion would be to find a new pulmonary doctor, one that you feel comfortable with and have confidence in. This will make a big difference in your life all by itself.> > Many of us here understand the struggle to control our weight. You are not alone in that. Where do you live? You will be best served by finding a specialist in interstitial lung disease. He/she will be more

knowledgable about your specific disease than the average pulmo. > > Please feel free to ask whatever questions you can think of. We're here to help!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > Hi Beth thanks I am from springield Massachusetts>thanks C> ____________ _________ _________ __> From: dcard2008 <dcard2008@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Sunday, March 1, 2009 6:11:16 PM> Subject: Hi Everyone> > > 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 Sher, I am so glad that your little Hannah brought her sunshine to you this weekend. Just when you needed it! Margaret

To: Breathe-Support Sent: 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 2, 2009