Re: 13 Centers of Excellance

[Guest guest]

Note: forwarded message attached.

Note: forwarded message attached.

Hi Joyce and everyone on the board. I feel like I already know you. My name is Jo Ann I am a NEWBIE and also a LURKER. I was DX with PF in Sept 07. I had been DX with Asthma for about 10 years. My breathing never got better with medicine.Every couple years I would change Doctors. New doctor still no improvement, finialy last year another doctor,didn't like the way I was breathing so he sent me for chest x-ray and a CT scan. He called me and said he was sending me to a Pulminary doctor. First visit with Pulminary doctor he tells me I have PF and I need a Lung Biopsy. Then he says "I know this is a lot to think about I will see you in 2-3 weeks. That is it. He never told me what PF was. I was more worried about a Lung Biopsy. I went home and went on the Internet and tried to find about a Biopsy. 2 weeks later I decided to check out PF I was shocked. I had no idea what PF was. I thought it was

just some simple thing that the doctor could give me some medicine and I would be fine. He never explained it to me. At that ime I tried to find a support group and I joined this board. I read posts and was so scared that I had to leave the board, I couldn't take it. I had my VATS in Oct 07 DX was UIP Saw the doctor in Nov. he said there was no medicine I could take, and that he would see me in 3 months and do PFTs and CT scan to see if any change. I saw him in Feb. he did PFTs no CT scan. Had nursre call me to tell me the results. Wouldn't even see me. I am so disappoiinted in this doctor. Has anyone else had these same problems with there doctor? I rejoined this board in Jan. This time around I was more ready to deal with this horrible disease. I have learned soo much from all of you. THANK YOU I am going to see about one of the Doctors at a Center of

Excellence. I am going back to my Pulminoligist next week because I am having trouble breathing. I purchased an Oximeter (that I learned about from the board) and have been checking my SATS and sometimes they are dropping into the 80s so I am going to see him again until I can find someone else. This is my first time posting . I 'm not comfortable with talking about myself, but i'm learning. I feel like everyone is already my friend. Sorry this is so long. Jo Ann UIP 2007

[Guest guest]

Jo Ann

So glad to see your post. Lurkers are always welcome and when they feel

comfortable to post we always love it. Some of us post more than others,

just the way we are...all different but with a common bond. The way you

were initially informed and treated, unfortunately, isn't all that

unusual. Give yourself credit for regrouping and deciding I'm taking

control.

The problems you've had with doctors not having time to talk or see you

is common. The one who did my diagnosis was good, took time to explain a

bit, did make clear what IPF was, but I couldn't see him when I needed

him so moved to one who maintains more office time. I can get to him

anytime I want and he'll sit and talk as long as I need. I always go in

with a list of questions and issues. My last time was primarily to cover

the report I got from Chicago. I trust him for balanced conversation and

help in me making choices I have to.

Now, one thing as you go back. More important than the CT's, have you

had a recent echocardiogram? Primarily the CT's are going to tell you

what you already know from your Sats and PFT's. Its like listening to

your lungs which, of course, they need to do. My pulmonologist listened

and he said, well its still there sort of funny and we both laughed. Its

no surprise, the crackling isn't going anywhere suddenly. But Pulmonary

Hypertension can sneak up on you and isn't as easy to realize early. So,

regular echocardiograms to check your heart are important, just as

regular blood work to check your other organs is. It's part of my, " well

I've got PF, but I'm going to do everything I can to make sure my lungs

are the first thing to go and everything else is protected " philosophy.

I will not go more than six months without an echo and if anything

starts showing up then I'll get more and get a catheter. U of Chicago's

recommendation on CT was to have another in a year. Only reason I would

have one sooner isn't PF, but the swollen lymph nodes I've had.

>

>

>

> Note: forwarded message attached.

>

>

> Note: forwarded message attached.

> Hi Joyce and everyone on the board. I feel like I already know you. My

name is Jo Ann I am a NEWBIE and also a LURKER. I was DX with PF in Sept

07. I had been DX with Asthma for about 10 years. My breathing never got

better with medicine.Every couple years I would change Doctors. New

doctor still no improvement, finialy last year another doctor,didn't

like the way I was breathing so he sent me for chest x-ray and a CT

scan. He called me and said he was sending me to a Pulminary doctor.

First visit with Pulminary doctor he tells me I have PF and I need a

Lung Biopsy. Then he says " I know this is a lot to think about I will

see you in 2-3 weeks. That is it.

> He never told me what PF was. I was more worried about a Lung Biopsy.

I went home and went on the Internet and tried to find about a Biopsy. 2

weeks later I decided to check out PF I was shocked. I had no idea what

PF was. I thought it was just some simple thing that the doctor could

give me some medicine and I would be fine. He never explained it to me.

At that ime I tried to find a support group and I joined this board. I

read posts and was so scared that I had to leave the board, I couldn't

take it.

> I had my VATS in Oct 07 DX was UIP Saw the doctor in Nov. he said

there was no medicine I could take, and that he would see me in 3 months

and do PFTs and CT scan to see if any change. I saw him in Feb. he did

PFTs no CT scan. Had nursre call me to tell me the results. Wouldn't

even see me. I am so disappoiinted in this doctor. Has anyone else had

these same problems with there doctor?

>

> I rejoined this board in Jan. This time around I was more ready to

deal with this horrible disease. I have learned soo much from all of

you. THANK YOU I am going to see about one of the Doctors at a Center of

Excellence.

> I am going back to my Pulminoligist next week because I am having

trouble breathing. I purchased an Oximeter (that I learned about from

the board) and have been checking my SATS and sometimes they are

dropping into the 80s so I am going to see him again until I can find

someone else.

>

> This is my first time posting . I 'm not comfortable with talking

about myself, but i'm learning. I feel like everyone is already my

friend. Sorry this is so long.

>

> Jo Ann UIP 2007

>

[Guest guest]

JoAnn.... I had an identical experience to yours! Had no idea about IPF until I went online. I made such a audible gasp when I read "fatal" that my husband came running, wondering what was wrong with me.

I opted out of any type of lung bio. I'll be 70 this year and at my age...there are no guarantees anyway...what's the point. I have other health issues I have to consider too.

I'm glad you decided to come back. You say you are a lurker, well that's ok and at least you are familiar with most of us by now.

What is your age, where do you live? Married?

I'm leaving for a Mother's Day lunch w/my kids but I'll catch ya later..........

If you're a mom,

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: 13 Centers of Excellance

Jo AnnSo glad to see your post. Lurkers are always welcome and when they feelcomfortable to post we always love it. Some of us post more than others,just the way we are...all different but with a common bond. The way youwere initially informed and treated, unfortunately, isn't all thatunusual. Give yourself credit for regrouping and deciding I'm takingcontrol.The problems you've had with doctors not having time to talk or see youis common. The one who did my diagnosis was good, took time to explain abit, did make clear what IPF was, but I couldn't see him when I neededhim so moved to one who maintains more office time. I can get to himanytime I want and he'll sit and talk as long as I need. I always go inwith a list of questions and issues. My last time was primarily to coverthe report I got from Chicago. I trust him for balanced conversation andhelp in me making choices I have to.Now, one thing as you go back. More important than the CT's, have youhad a recent echocardiogram? Primarily the CT's are going to tell youwhat you already know from your Sats and PFT's. Its like listening toyour lungs which, of course, they need to do. My pulmonologist listenedand he said, well its still there sort of funny and we both laughed. Itsno surprise, the crackling isn't going anywhere suddenly. But PulmonaryHypertension can sneak up on you and isn't as easy to realize early. So,regular echocardiograms to check your heart are important, just asregular blood work to check your other organs is. It's part of my, "wellI've got PF, but I'm going to do everything I can to make sure my lungsare the first thing to go and everything else is protected" philosophy.I will not go more than six months without an echo and if anythingstarts showing up then I'll get more and get a catheter. U of Chicago'srecommendation on CT was to have another in a year. Only reason I wouldhave one sooner isn't PF, but the swollen lymph nodes I've had.>>>> Note: forwarded message attached.>>> Note: forwarded message attached.> Hi Joyce and everyone on the board. I feel like I already know you. Myname is Jo Ann I am a NEWBIE and also a LURKER. I was DX with PF in Sept07. I had been DX with Asthma for about 10 years. My breathing never gotbetter with medicine.Every couple years I would change Doctors. Newdoctor still no improvement, finialy last year another doctor,didn'tlike the way I was breathing so he sent me for chest x-ray and a CTscan. He called me and said he was sending me to a Pulminary doctor.First visit with Pulminary doctor he tells me I have PF and I need aLung Biopsy. Then he says "I know this is a lot to think about I willsee you in 2-3 weeks. That is it.> He never told me what PF was. I was more worried about a Lung Biopsy.I went home and went on the Internet and tried to find about a Biopsy. 2weeks later I decided to check out PF I was shocked. I had no idea whatPF was. I thought it was just some simple thing that the doctor couldgive me some medicine and I would be fine. He never explained it to me.At that ime I tried to find a support group and I joined this board. Iread posts and was so scared that I had to leave the board, I couldn'ttake it.> I had my VATS in Oct 07 DX was UIP Saw the doctor in Nov. he saidthere was no medicine I could take, and that he would see me in 3 monthsand do PFTs and CT scan to see if any change. I saw him in Feb. he didPFTs no CT scan. Had nursre call me to tell me the results. Wouldn'teven see me. I am so disappoiinted in this doctor. Has anyone else hadthese same problems with there doctor?>> I rejoined this board in Jan. This time around I was more ready todeal with this horrible disease. I have learned soo much from all ofyou. THANK YOU I am going to see about one of the Doctors at a Center ofExcellence.> I am going back to my Pulminoligist next week because I am havingtrouble breathing. I purchased an Oximeter (that I learned about fromthe board) and have been checking my SATS and sometimes they aredropping into the 80s so I am going to see him again until I can findsomeone else.>> This is my first time posting . I 'm not comfortable with talkingabout myself, but i'm learning. I feel like everyone is already myfriend. Sorry this is so long.>> Jo Ann UIP 2007>

[Guest guest]

JoAnn, Welcome, Please feel free to post anything you want to know about. someone here will answer. I am so sorry you found one of the crappy doctors that so uncaring. A lot of us have had that kind of experience. You didn't say where in the country you are. Or what Country. If you are close to a University Teaching Hospital that would be the best place for you.  Until you need us remember God is in control. Take Care of You. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Note: forwarded message attached. Date: May 11, 2008 12:54:16 PM EDTTo: breathesupport Subject: Re: 13 Centers of Excellance Note: forwarded message attached.Date: May 9, 2008 8:55:40 PM EDTTo: janne5303@...Subject: Re: 13 Centers of Excellence Hi Joyce and everyone on the board.  I feel like I already know you.  My name is Jo Ann I am a NEWBIE and also a LURKER.  I was DX with PF in Sept 07. I had been DX with Asthma for about 10 years.  My breathing never got better with medicine.Every couple years I would change Doctors. New doctor still no improvement, finialy last year another doctor,didn't like the way I was breathing so he sent me for chest x-ray and a CT scan. He called me and said he was sending me to a Pulminary doctor.  First visit with Pulminary doctor he tells me I have PF and I need a Lung Biopsy.  Then he says "I know this is a lot to think about I will see you in 2-3 weeks.  That is it. He never told me what PF was.  I was more worried about a Lung Biopsy.  I went home and went on the Internet and tried to find about a Biopsy. 2 weeks later I decided to check out PF I was shocked.  I had no idea what PF was.  I thought it was just some simple thing that the doctor could give me some medicine and I would be fine.  He never explained it to me.  At that ime I tried to find a support group and I joined this board.  I read posts and was so scared that I had to leave the board, I couldn't take it. I had my VATS in Oct 07  DX was UIP  Saw the doctor in Nov. he said there was no medicine I could take, and that he would see me in 3 months and do PFTs and CT scan to see if any change.  I saw him in Feb. he did PFTs no CT scan.  Had nursre call me to tell me the results.  Wouldn't even see me. I am so disappoiinted in this doctor.  Has anyone else had these same problems with there doctor?   I rejoined this board in Jan. This time around I was more ready to deal with this horrible disease. I have learned soo much from all of you.  THANK YOU  I am going to see about one of the Doctors at a Center of Excellence. I am going back to my Pulminoligist next week because I am having trouble breathing.  I purchased an Oximeter (that I learned about from the board) and have been checking my SATS and sometimes they are dropping into the 80s so I am going to see him again until I can find someone else.   This is my first time posting .  I 'm not comfortable with talking about myself, but i'm learning. I feel like everyone is already my friend. Sorry this is so long.   Jo Ann  UIP 2007

[Guest guest]

Jo Ann,

You have every right to be in a state of shock. There are so many on this board who found out what Pulmonary Fibrosis was in the same way that you did. A doctor that would do that to a patient should lose his/her liscence. It is cruel!

When I had my biopsy and diagnosed, the pulmonologist explained in detail, even drew pictures to explain. He did tell us 2-4 years....but that was 11 years ago. He kept telling me how lucky I was and I always corrected him to say that it was not luck, but faith. I told him and I know that God is in control and prayer works!

It has not been an easy road, but I love life and whatever it takes....I will do. I have seen several pulmonary docs for evaluation and consults, etc. Doctor's are not the same. Some have hearts!

You are so wise to be seeking better evaluation and care at a Center of Excellence hospital. Even though there are no effective treatment or cure, there are many ways to make our quality of life better. The realistic goal for us is to become stable. No progression is a wonderful thing. A good doctor will really work toward this end. Find one!

Come back and let us learn from you. We are good folk to lean on when you are down. Welcome.

Hugs, Joyce D.Pulmonary 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>> > > Note: forwarded message attached.> > > Note: forwarded message attached.> Hi Joyce and everyone on the board. I feel like I already know you. My name is Jo Ann I am a NEWBIE and also a LURKER. I was DX with PF in Sept 07. I had been DX with Asthma for about 10 years. My breathing never got better with medicine.Every couple years I would change Doctors. New doctor still no improvement, finialy last year another doctor,didn't like the way I was breathing so he sent me for chest x-ray and a CT scan. He called me and said he was sending me to a Pulminary doctor. First visit with Pulminary doctor he tells me I have PF and I need a Lung Biopsy. Then he says "I know this is a lot to think about I will see you in 2-3 weeks. That is it.> He never told me what PF was. I was more worried about a Lung Biopsy. I went home and went on the Internet and tried to find about a Biopsy. 2 weeks later I decided to check out PF I was shocked. I had no idea what PF was. I thought it was just some simple thing that the doctor could give me some medicine and I would be fine. He never explained it to me. At that ime I tried to find a support group and I joined this board. I read posts and was so scared that I had to leave the board, I couldn't take it.> I had my VATS in Oct 07 DX was UIP Saw the doctor in Nov. he said there was no medicine I could take, and that he would see me in 3 months and do PFTs and CT scan to see if any change. I saw him in Feb. he did PFTs no CT scan. Had nursre call me to tell me the results. Wouldn't even see me. I am so disappoiinted in this doctor. Has anyone else had these same problems with there doctor?> > I rejoined this board in Jan. This time around I was more ready to deal with this horrible disease. I have learned soo much from all of you. THANK YOU I am going to see about one of the Doctors at a Center of Excellence.> I am going back to my Pulminoligist next week because I am having trouble breathing. I purchased an Oximeter (that I learned about from the board) and have been checking my SATS and sometimes they are dropping into the 80s so I am going to see him again until I can find someone else.> > This is my first time posting . I 'm not comfortable with talking about myself, but i'm learning. I feel like everyone is already my friend. Sorry this is so long.> > Jo Ann UIP 2007>

[Guest guest]

Jo Ann

MY name is Glenn my e-mail address is

glennrjb@... I could have written the same

letter that I am answering to you . My biopsy was dec

of 07. still hurts and and my doctor says it some

times takes months to heal . The only good news is

that in order to have a lung transplant you must have

a biopsy. I am on oxygen 24-7 now and my doctor says

that at my breathing level I can not even get on the

the waiting list for a lung transplant. But that he

does not want to wait until I get to sick for it to

work. so he is at least trying to assist me. Dont feel

to mad at the doctor because he would not see or talk

to you ,I believe it is because #1. they have to many

patients to spend as much time with one of us as they

would like. #2. They have a very hard job having to

tell someone that they are dying and that the doctors

cant help has to be incredibily hard on someone who

has dedicated their life to helping and curing or at

least easing the pain of their patients.

I could not get my doctor to call me back eitheir, and

then he wanted to have me see his physicians

assistant. I called my lawyer who told me that it was

his right to have us see his p.a. and that if we

raised to much trouble he could just tell us to find

another doctor I (jokingly ) ask the lawyer that if I

told the doctor that I only had 12 months to live but

that he only had 11 if he thought the doctor would

call me then. He said no but the police would arrest

me. I said well I can handle a few monts in prison.

The lawyer said that he thought I should wait till I

only had a few weeks left before I tried that.

Since then I have found out that my doctor is working

with a team of doctors to decide the best course of

treatment for me and I have developed a trust in him

and his whole office staff. I wish you & I could get

together to discuss this subjest in more detail. mabye

if you reply we could arrange a phone call or mabye a

conference call with us two and any one else who is

concerned about their health and treatment..

p.s. DO NOT LET YOUR O2 LEVEL DROP INTO THE LOW 80'S.

you can only live between 84 and 96. if it drops below

80 you will most probably have a heart attack or a

stroke. The heart and the brain are both demanding

organs and they will fight over the oxygen and one

will win. I wish you good health and may GOD go with

you. I will look for your reply cte v

--- Jo Ann Barrett

wrote:

>

>

> Note: forwarded message attached.> Date: Sun, 11 May

2008 09:54:16 -0700 (PDT)

> From: Jo Ann Barrett

>

> Subject: Re: 13 Centers of Excellance

> To: breathesupport

>

>

>

> Note: forwarded message attached.> Date: Fri, 9 May

2008 17:55:40 -0700 (PDT)

> From: Jo Ann Barrett

>

> Subject: Re: 13 Centers of Excellence

> To: janne5303@...

>

> Hi Joyce and everyone on the board. I feel like I

> already know you. My name is Jo Ann I am a NEWBIE

> and also a LURKER. I was DX with PF in Sept 07. I

> had been DX with Asthma for about 10 years. My

> breathing never got better with medicine.Every

> couple years I would change Doctors. New doctor

> still no improvement, finialy last year another

> doctor,didn't like the way I was breathing so he

> sent me for chest x-ray and a CT scan. He called me

> and said he was sending me to a Pulminary doctor.

> First visit with Pulminary doctor he tells me I have

> PF and I need a Lung Biopsy. Then he says " I know

> this is a lot to think about I will see you in 2-3

> weeks. That is it.

> He never told me what PF was. I was more worried

> about a Lung Biopsy. I went home and went on the

> Internet and tried to find about a Biopsy. 2 weeks

> later I decided to check out PF I was shocked. I

> had no idea what PF was. I thought it was just some

> simple thing that the doctor could give me some

> medicine and I would be fine. He never explained it

> to me. At that ime I tried to find a support group

> and I joined this board. I read posts and was so

> scared that I had to leave the board, I couldn't

> take it.

> I had my VATS in Oct 07 DX was UIP Saw the

> doctor in Nov. he said there was no medicine I could

> take, and that he would see me in 3 months and do

> PFTs and CT scan to see if any change. I saw him in

> Feb. he did PFTs no CT scan. Had nursre call me to

> tell me the results. Wouldn't even see me. I am so

> disappoiinted in this doctor. Has anyone else had

> these same problems with there doctor?

>

> I rejoined this board in Jan. This time around I

> was more ready to deal with this horrible disease. I

> have learned soo much from all of you. THANK YOU I

> am going to see about one of the Doctors at a Center

> of Excellence.

> I am going back to my Pulminoligist next week

> because I am having trouble breathing. I purchased

> an Oximeter (that I learned about from the board)

> and have been checking my SATS and sometimes they

> are dropping into the 80s so I am going to see him

> again until I can find someone else.

>

> This is my first time posting . I 'm not

> comfortable with talking about myself, but i'm

> learning. I feel like everyone is already my friend.

> Sorry this is so long.

>

> Jo Ann UIP 2007

>

>

>

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[Guest guest]

,

Thanks for joining our group. This is a great place to learn and to get to know others in the same boat as you. We share so much. The population in general cannot connect with us because they know very little about this disease.

You mentioned the 02 dropping below 88. You are right in saying that it is very harmful to the rest of your body. However, you will not die. I have a difficult time staying above 90 because I am in end stage and there is not much air space. My saturation has been as low as 27, yes 27. It has dropped into the 50's and below many times. Most people pass out at these levels. I have not. I have had convulsions from low saturation. I use my oximeter and am very aware. Walk a little, sit a little. My 02 is on 8L to 10L.

I'm glad that you are getting good medical care. You need to feel confident about your medical team. This is serious stuff.

Welcome here.

Hugs, Joyce D.Pulmonary 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

> > > > > > > Note: forwarded message attached.> Date: Sun, 11 May> 2008 09:54:16 -0700 (PDT)> > > Subject: Re: 13 Centers of Excellance> > To: breathesupport > > > > > > > > Note: forwarded message attached.> Date: Fri, 9 May> 2008 17:55:40 -0700 (PDT)> > > Subject: Re: 13 Centers of Excellence> > To: janne5303@...> > > > Hi Joyce and everyone on the board. I feel like I> > already know you. My name is Jo Ann I am a NEWBIE> > and also a LURKER. I was DX with PF in Sept 07. I> > had been DX with Asthma for about 10 years. My> > breathing never got better with medicine.Every> > couple years I would change Doctors. New doctor> > still no improvement, finialy last year another> > doctor,didn't like the way I was breathing so he> > sent me for chest x-ray and a CT scan. He called me> > and said he was sending me to a Pulminary doctor. > > First visit with Pulminary doctor he tells me I have> > PF and I need a Lung Biopsy. Then he says "I know> > this is a lot to think about I will see you in 2-3> > weeks. That is it.> > He never told me what PF was. I was more worried> > about a Lung Biopsy. I went home and went on the> > Internet and tried to find about a Biopsy. 2 weeks> > later I decided to check out PF I was shocked. I> > had no idea what PF was. I thought it was just some> > simple thing that the doctor could give me some> > medicine and I would be fine. He never explained it> > to me. At that ime I tried to find a support group> > and I joined this board. I read posts and was so> > scared that I had to leave the board, I couldn't> > take it.> > I had my VATS in Oct 07 DX was UIP Saw the> > doctor in Nov. he said there was no medicine I could> > take, and that he would see me in 3 months and do> > PFTs and CT scan to see if any change. I saw him in> > Feb. he did PFTs no CT scan. Had nursre call me to> > tell me the results. Wouldn't even see me. I am so> > disappoiinted in this doctor. Has anyone else had> > these same problems with there doctor?> > > > I rejoined this board in Jan. This time around I> > was more ready to deal with this horrible disease. I> > have learned soo much from all of you. THANK YOU I> > am going to see about one of the Doctors at a Center> > of Excellence.> > I am going back to my Pulminoligist next week> > because I am having trouble breathing. I purchased> > an Oximeter (that I learned about from the board)> > and have been checking my SATS and sometimes they> > are dropping into the 80s so I am going to see him> > again until I can find someone else.> > > > This is my first time posting . I 'm not> > comfortable with talking about myself, but i'm> > learning. I feel like everyone is already my friend.> > Sorry this is so long.> > > > Jo Ann UIP 2007> > > > > > > > > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>