Re: My visit with pulmonologist today

[Guest guest]

Hi Kathy, It's good to hear from you. I am sorry your sats are dropping. I also know how scary that can be. I am the one that goes to Shands also. I was there in March. Dr. Antony is my Dr. and the transplant Dr. I saw was Dr. Akindapa. (??spelling) If I remember right you see Dr. Boz. He is a really good Dr.Keep us posted on the visit in May. You can also just post to say Hi.. ;)God Bless.Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Here is an e mail that we sent out today......just wanted to update all of you here too. Take care and wishes for easy breathing going out to all of you!To bring you all up to date, Kathy had a new PFT test done about 2 weeks ago. This morning we met with the local Pulmonologist .Again, this is a mixed bag. The amount of air that her lungs can hold has again decreased. As of April 2006, her lungs could hold 59% of where they should be, and in October of 2007 it dropped to 53%. This last PFT showed that it has now dropped to 49%. For a woman her age and weight, Kathy's lungs should hold 4.86 liters of air. Hers hold 2.38 liters of air and therefore her lung capacity has diminished to 49%.In May, we will go to Shands Hospital to consult with the Transplant Team. The Doctor we saw today does not believe that Kathy has entered her last 12 months, which would necessitate a transplant. We will confirm that at Shands.This news should probably be expected. It is well within the rate of deterioration predicted by the physicians, however it is disappointing to hear that the lung deterioration continues.

[Guest guest]

Kathy,

I am so glad that you are going to Shands. We know from Gwynne what a blessing a transplant can be. I am sorry that you are having deterioration. I will pray that you will stabalize and have some more time on this earth. Let us know when you see the docs at Shands.

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>> Here is an e mail that we sent out today......just wanted to update > all of you here too. Take care and wishes for easy breathing going > out to all of you!> > > To bring you all up to date, Kathy had a new PFT test done about 2 > weeks ago. This morning we met with the local Pulmonologist .Again, > this is a mixed bag. The amount of air that her lungs can hold has > again decreased. As of April 2006, her lungs could hold 59% of where > they should be, and in October of 2007 it dropped to 53%. This last > PFT showed that it has now dropped to 49%. For a woman her age and > weight, Kathy's lungs should hold 4.86 liters of air. Hers hold 2.38 > liters of air and therefore her lung capacity has diminished to 49%.> > In May, we will go to Shands Hospital to consult with the Transplant > Team. The Doctor we saw today does not believe that Kathy has entered > her last 12 months, which would necessitate a transplant. We will > confirm that at Shands.> > This news should probably be expected. It is well within the rate of > deterioration predicted by the physicians, however it is > disappointing to hear that the lung deterioration continues.>

[Guest guest]

> >

> > Here is an e mail that we sent out today......just wanted to

update

> > all of you here too. Take care and wishes for easy breathing going

> > out to all of you!

> >

> >

> > To bring you all up to date, Kathy had a new PFT test done about 2

> > weeks ago. This morning we met with the local

Pulmonologist .Again,

> > this is a mixed bag. The amount of air that her lungs can hold has

> > again decreased. As of April 2006, her lungs could hold 59% of

where

> > they should be, and in October of 2007 it dropped to 53%. This

last

> > PFT showed that it has now dropped to 49%. For a woman her age and

> > weight, Kathy's lungs should hold 4.86 liters of air. Hers hold

2.38

> > liters of air and therefore her lung capacity has diminished to

49%.

> >

> > In May, we will go to Shands Hospital to consult with the

Transplant

> > Team. The Doctor we saw today does not believe that Kathy has

entered

> > her last 12 months, which would necessitate a transplant. We will

> > confirm that at Shands.

> >

> > This news should probably be expected. It is well within the rate

of

> > deterioration predicted by the physicians, however it is

> > disappointing to hear that the lung deterioration continues.

> >

>

[Guest guest]

There have been a few Kathy/Kathies here and I'm not sure I know you.....maybe you go back before my time....2 years ago.

I'm saddened to hear of your on going problems! I'm sure you are feeling overwhelmed.

I'm glad you have each other tho'.

God bless you both and bring comfort to you.

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

Re: My visit with pulmonologist today

> >> > Here is an e mail that we sent out today......just wanted to update> > all of you here too. Take care and wishes for easy breathing going> > out to all of you!> >> >> > To bring you all up to date, Kathy had a new PFT test done about 2> > weeks ago. This morning we met with the local Pulmonologist .Again,> > this is a mixed bag. The amount of air that her lungs can hold has> > again decreased. As of April 2006, her lungs could hold 59% of where> > they should be, and in October of 2007 it dropped to 53%. This last> > PFT showed that it has now dropped to 49%. For a woman her age and> > weight, Kathy's lungs should hold 4.86 liters of air. Hers hold 2.38> > liters of air and therefore her lung capacity has diminished to 49%.> >> > In May, we will go to Shands Hospital to consult with the Transplant> > Team. The Doctor we saw today does not believe that Kathy has entered> > her last 12 months, which would necessitate a transplant. We will> > confirm that at Shands.> >> > This news should probably be expected. It is well within the rate of> > deterioration predicted by the physicians, however it is> > disappointing to hear that the lung deterioration continues.> >>

[Guest guest]

-Mama-Sher,

I have been here for awhile, was on here first about a year ago when

first dx'd and Peggy was so nice and helpful as were so many others.

During this past 6 months, I think i went into a denial of

sorts..............I have continued to read and do a great deal of

research, but immersed myself in my children and my

grandchildren..........i guess I thought that this would preogress

slowly. This Dr. visit was a HUGE wake-up call and I have not slept

much these past 2 nights, coming to grips with how very real this

disease is and that I am really scared. I go to Pulmonary Rehab 2x a

week/////////////////////////as per Shands.............the visit from

last October.and now I wait for may 14th to go back there. I am

feeling kind of numb..............

Take care, and thanks for our note,

Kathy

- In Breathe-Support , " Sher Bauman " wrote:

>

> There have been a few Kathy/Kathies here and I'm not sure I know

you.....maybe you go back before my time....2 years ago.

> I'm saddened to hear of your on going problems! I'm sure you are

feeling overwhelmed.

> I'm glad you have each other tho'.

> God bless you both and bring comfort to you.

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

>

> Re: My visit with pulmonologist today

>

>

>

> > >

> > > Here is an e mail that we sent out today......just wanted to

> update

> > > all of you here too. Take care and wishes for easy breathing

going

> > > out to all of you!

> > >

> > >

> > > To bring you all up to date, Kathy had a new PFT test done

about 2

> > > weeks ago. This morning we met with the local

> Pulmonologist .Again,

> > > this is a mixed bag. The amount of air that her lungs can

hold has

> > > again decreased. As of April 2006, her lungs could hold 59%

of

> where

> > > they should be, and in October of 2007 it dropped to 53%.

This

> last

> > > PFT showed that it has now dropped to 49%. For a woman her

age and

> > > weight, Kathy's lungs should hold 4.86 liters of air. Hers

hold

> 2.38

> > > liters of air and therefore her lung capacity has diminished

to

> 49%.

> > >

> > > In May, we will go to Shands Hospital to consult with the

> Transplant

> > > Team. The Doctor we saw today does not believe that Kathy has

> entered

> > > her last 12 months, which would necessitate a transplant. We

will

> > > confirm that at Shands.

> > >

> > > This news should probably be expected. It is well within the

rate

> of

> > > deterioration predicted by the physicians, however it is

> > > disappointing to hear that the lung deterioration continues.

> > >

> >

>

[Guest guest]

Kathy,

We have all felt that prickly fear when we finally let the truth set in. There are several on this board who were told "pulmonary fibrosis" and sent home with no information. When they found it on the net, it just blew thier socks off. How cruel of a doctor to do that to a patient.

I think it is easy at first when we aren't feeling so awfully bad to ignore the reality of this disease, but as time wears on and the disease begins to progress....we get hit in the face whether we want to know or not.

I do know the fear, the sadness, the grieving....I've walked that walk and still walking. Still wake up in the night scared. Please know that we are here for you and expect that you will be here when we need you. We "get it"....we live it.

I am praying that your progression will be slowed or stopped. Is there a plan?

Big hugs coming your way!

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

> > > >> > > > Here is an e mail that we sent out today......just wanted to > > update> > > > all of you here too. Take care and wishes for easy breathing > going> > > > out to all of you!> > > >> > > >> > > > To bring you all up to date, Kathy had a new PFT test done > about 2> > > > weeks ago. This morning we met with the local > > Pulmonologist .Again,> > > > this is a mixed bag. The amount of air that her lungs can > hold has> > > > again decreased. As of April 2006, her lungs could hold 59% > of > > where> > > > they should be, and in October of 2007 it dropped to 53%. > This > > last> > > > PFT showed that it has now dropped to 49%. For a woman her > age and> > > > weight, Kathy's lungs should hold 4.86 liters of air. Hers > hold > > 2.38> > > > liters of air and therefore her lung capacity has diminished > to > > 49%.> > > >> > > > In May, we will go to Shands Hospital to consult with the > > Transplant> > > > Team. The Doctor we saw today does not believe that Kathy has > > entered> > > > her last 12 months, which would necessitate a transplant. We > will> > > > confirm that at Shands.> > > >> > > > This news should probably be expected. It is well within the > rate > > of> > > > deterioration predicted by the physicians, however it is> > > > disappointing to hear that the lung deterioration continues.> > > >> > >> >>

[Guest guest]

Joyce,

I felt that hug right down to my toes. Other than the wait until May

14th.......nothing else is happening right now...........i do know

the 3am wake up and the thoughts. That has been happening alot

lately.

Thanks again, this is hard.......take care,

KAthy

-- In Breathe-Support , " Joyce " wrote:

>

>

> Kathy,

>

> We have all felt that prickly fear when we finally let the truth

set in.

> There are several on this board who were told " pulmonary fibrosis "

and

> sent home with no information. When they found it on the net, it

just

> blew thier socks off. How cruel of a doctor to do that to a

patient.

>

> I think it is easy at first when we aren't feeling so awfully bad to

> ignore the reality of this disease, but as time wears on and the

disease

> begins to progress....we get hit in the face whether we want to

know or

> not.

>

> I do know the fear, the sadness, the grieving....I've walked that

walk

> and still walking. Still wake up in the night scared. Please know

that

> we are here for you and expect that you will be here when we need

you.

> We " get it " ....we live it.

>

> I am praying that your progression will be slowed or stopped. Is

there

> a plan?

>

> Big hugs coming your way! [i love God]

>

>

>

> 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

>

>

>

>

> > > > >

> > > > > Here is an e mail that we sent out today......just wanted to

> > > update

> > > > > all of you here too. Take care and wishes for easy breathing

> > going

> > > > > out to all of you!

> > > > >

> > > > >

> > > > > To bring you all up to date, Kathy had a new PFT test done

> > about 2

> > > > > weeks ago. This morning we met with the local

> > > Pulmonologist .Again,

> > > > > this is a mixed bag. The amount of air that her lungs can

> > hold has

> > > > > again decreased. As of April 2006, her lungs could hold 59%

> > of

> > > where

> > > > > they should be, and in October of 2007 it dropped to 53%.

> > This

> > > last

> > > > > PFT showed that it has now dropped to 49%. For a woman her

> > age and

> > > > > weight, Kathy's lungs should hold 4.86 liters of air. Hers

> > hold

> > > 2.38

> > > > > liters of air and therefore her lung capacity has diminished

> > to

> > > 49%.

> > > > >

> > > > > In May, we will go to Shands Hospital to consult with the

> > > Transplant

> > > > > Team. The Doctor we saw today does not believe that Kathy

has

> > > entered

> > > > > her last 12 months, which would necessitate a transplant. We

> > will

> > > > > confirm that at Shands.

> > > > >

> > > > > This news should probably be expected. It is well within the

> > rate

> > > of

> > > > > deterioration predicted by the physicians, however it is

> > > > > disappointing to hear that the lung deterioration continues.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Kathy....could you please add your state, Dx to your signature? I get mixed up which Kathy I'm talking to. I can't always tell just by content. Thanks.

I was here when you first joined. I'm sorry I don't remember your details....the board has grown so much.

I can relate to the fear you must feel...we all relate.

I was one who found I have a fatal disease on the net! Wow!

How old are you? Kids? Do you have family close by to be supportive?

Hugs to you

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

Re: My visit with pulmonologist today

Joyce,I felt that hug right down to my toes. Other than the wait until May 14th.......nothing else is happening right now...........i do know the 3am wake up and the thoughts. That has been happening alot lately. Thanks again, this is hard.......take care,KAthy-- In Breathe-Support , "Joyce" wrote:>> > Kathy,> > We have all felt that prickly fear when we finally let the truth set in.> There are several on this board who were told "pulmonary fibrosis" and> sent home with no information. When they found it on the net, it just> blew thier socks off. How cruel of a doctor to do that to a patient.> > I think it is easy at first when we aren't feeling so awfully bad to> ignore the reality of this disease, but as time wears on and the disease> begins to progress....we get hit in the face whether we want to know or> not.> > I do know the fear, the sadness, the grieving....I've walked that walk> and still walking. Still wake up in the night scared. Please know that> we are here for you and expect that you will be here when we need you. > We "get it"....we live it.> > I am praying that your progression will be slowed or stopped. Is there> a plan?> > Big hugs coming your way! [i love God]> > > > 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> > > > > > > > >> > > > > Here is an e mail that we sent out today......just wanted to> > > update> > > > > all of you here too. Take care and wishes for easy breathing> > going> > > > > out to all of you!> > > > >> > > > >> > > > > To bring you all up to date, Kathy had a new PFT test done> > about 2> > > > > weeks ago. This morning we met with the local> > > Pulmonologist .Again,> > > > > this is a mixed bag. The amount of air that her lungs can> > hold has> > > > > again decreased. As of April 2006, her lungs could hold 59%> > of> > > where> > > > > they should be, and in October of 2007 it dropped to 53%.> > This> > > last> > > > > PFT showed that it has now dropped to 49%. For a woman her> > age and> > > > > weight, Kathy's lungs should hold 4.86 liters of air. Hers> > hold> > > 2.38> > > > > liters of air and therefore her lung capacity has diminished> > to> > > 49%.> > > > >> > > > > In May, we will go to Shands Hospital to consult with the> > > Transplant> > > > > Team. The Doctor we saw today does not believe that Kathy has> > > entered> > > > > her last 12 months, which would necessitate a transplant. We> > will> > > > > confirm that at Shands.> > > > >> > > > > This news should probably be expected. It is well within the> > rate> > > of> > > > > deterioration predicted by the physicians, however it is> > > > > disappointing to hear that the lung deterioration continues.> > > > >> > > >> > >> >>

[Guest guest]

Kathy...well, today you get a....DAMNIT!. When I don't know what else to say, it's just a plain ole DAMNIT!

I went through the numb stage and sometimes I wonder if ALL of it is behind me...Maybe we have to retain a wee bit of numbness to carry on....

Do stay in touch. The board can at least be encouraging and give honest feedback.

hugs to you

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

Re: My visit with pulmonologist today> > > > > >> > > Here is an e mail that we sent out today......just wanted to > update> > > all of you here too. Take care and wishes for easy breathing going> > > out to all of you!> > >> > >> > > To bring you all up to date, Kathy had a new PFT test done about 2> > > weeks ago. This morning we met with the local > Pulmonologist .Again,> > > this is a mixed bag. The amount of air that her lungs can hold has> > > again decreased. As of April 2006, her lungs could hold 59% of > where> > > they should be, and in October of 2007 it dropped to 53%. This > last> > > PFT showed that it has now dropped to 49%. For a woman her age and> > > weight, Kathy's lungs should hold 4.86 liters of air. Hers hold > 2.38> > > liters of air and therefore her lung capacity has diminished to > 49%.> > >> > > In May, we will go to Shands Hospital to consult with the > Transplant> > > Team. The Doctor we saw today does not believe that Kathy has > entered> > > her last 12 months, which would necessitate a transplant. We will> > > confirm that at Shands.> > >> > > This news should probably be expected. It is well within the rate > of> > > deterioration predicted by the physicians, however it is> > > disappointing to hear that the lung deterioration continues.> > >> >>

[Guest guest]

Mama-Sher,

You are right I should have thought of this myself..I am married 59

years to the love of my life, Jim. He is my " other " heartbeat.as I

tell him. We have 3 married sons..our oldest, 36, lives in Atlanta.

Ga and spends alot of time in Canada and overseas for his job, ---

Then come the twins, and .they are 33 is a

Major in the Army and ships out on May 28 for a year in South Korea.

He has two children Logan 4 and Caelie almost 2. His wife and the

children will be living about an hour and a half from us. .used

to be in the Army, was in Iraq.and since has left the Army for a

government job.....along the same lines .....and he has a little

girle Cerys who is 14 months old. He and his wife were recently

transferred to Fort Lauderdale.about 3 hours from us. and

and their families were both within 40 minitues of us for the

past two years.....and we saw them constantly.......but jobs and

transfers have changed or are changing this.That us why I said that

I :ignored: this and just spent time with my grandkids.......now we

will see them all, but not almost every day.........I need to find

something else to fill these hours.so I do not " dwell "

My Jim is my strongest..but he is also feeling the pressures of this

and I have not found a way to help him....and I need to do this.\

Take care,

Kathy

Florida.....Dx.4/17/07 PF

In Breathe-Support , " Sher Bauman " wrote:

>

> Kathy....could you please add your state, Dx to your signature? I

get mixed up which Kathy I'm talking to. I can't always tell just by

content. Thanks.

> I was here when you first joined. I'm sorry I don't remember your

details....the board has grown so much.

> I can relate to the fear you must feel...we all relate.

> I was one who found I have a fatal disease on the net! Wow!

> How old are you? Kids? Do you have family close by to be supportive?

> Hugs to you

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

>

> Re: My visit with pulmonologist today

>

>

> Joyce,

>

> I felt that hug right down to my toes. Other than the wait until

May

> 14th.......nothing else is happening right now...........i do

know

> the 3am wake up and the thoughts. That has been happening alot

> lately.

> Thanks again, this is hard.......take care,

> KAthy

>

> -- In Breathe-Support , " Joyce " <janne5303@> wrote:

> >

> >

> > Kathy,

> >

> > We have all felt that prickly fear when we finally let the

truth

> set in.

> > There are several on this board who were told " pulmonary

fibrosis "

> and

> > sent home with no information. When they found it on the net,

it

> just

> > blew thier socks off. How cruel of a doctor to do that to a

> patient.

> >

> > I think it is easy at first when we aren't feeling so awfully

bad to

> > ignore the reality of this disease, but as time wears on and

the

> disease

> > begins to progress....we get hit in the face whether we want to

> know or

> > not.

> >

> > I do know the fear, the sadness, the grieving....I've walked

that

> walk

> > and still walking. Still wake up in the night scared. Please

know

> that

> > we are here for you and expect that you will be here when we

need

> you.

> > We " get it " ....we live it.

> >

> > I am praying that your progression will be slowed or stopped.

Is

> there

> > a plan?

> >

> > Big hugs coming your way! [i love God]

> >

> >

> >

> > 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

> >

> >

> >

> >

> > > > > >

> > > > > > Here is an e mail that we sent out today......just

wanted to

> > > > update

> > > > > > all of you here too. Take care and wishes for easy

breathing

> > > going

> > > > > > out to all of you!

> > > > > >

> > > > > >

> > > > > > To bring you all up to date, Kathy had a new PFT test

done

> > > about 2

> > > > > > weeks ago. This morning we met with the local

> > > > Pulmonologist .Again,

> > > > > > this is a mixed bag. The amount of air that her lungs

can

> > > hold has

> > > > > > again decreased. As of April 2006, her lungs could hold

59%

> > > of

> > > > where

> > > > > > they should be, and in October of 2007 it dropped to

53%.

> > > This

> > > > last

> > > > > > PFT showed that it has now dropped to 49%. For a woman

her

> > > age and

> > > > > > weight, Kathy's lungs should hold 4.86 liters of air.

Hers

> > > hold

> > > > 2.38

> > > > > > liters of air and therefore her lung capacity has

diminished

> > > to

> > > > 49%.

> > > > > >

> > > > > > In May, we will go to Shands Hospital to consult with

the

> > > > Transplant

> > > > > > Team. The Doctor we saw today does not believe that

Kathy

> has

> > > > entered

> > > > > > her last 12 months, which would necessitate a

transplant. We

> > > will

> > > > > > confirm that at Shands.

> > > > > >

> > > > > > This news should probably be expected. It is well

within the

> > > rate

> > > > of

> > > > > > deterioration predicted by the physicians, however it is

> > > > > > disappointing to hear that the lung deterioration

continues.

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

-OOPS!!!

I should proof read...I have been married 38 years and I am 59...will

be 60 on 7/25!.lol!!

-- In Breathe-Support , " patrickkathleen "

wrote:

>

> Mama-Sher,

>

> You are right I should have thought of this myself..I am married 59

> years to the love of my life, Jim. He is my " other " heartbeat.as I

> tell him. We have 3 married sons..our oldest, 36, lives in Atlanta.

> Ga and spends alot of time in Canada and overseas for his job, ---

> Then come the twins, and .they are 33 is a

> Major in the Army and ships out on May 28 for a year in South

Korea.

> He has two children Logan 4 and Caelie almost 2. His wife and the

> children will be living about an hour and a half from us.

.used

> to be in the Army, was in Iraq.and since has left the Army for a

> government job.....along the same lines .....and he has a little

> girle Cerys who is 14 months old. He and his wife were recently

> transferred to Fort Lauderdale.about 3 hours from us. and

> and their families were both within 40 minitues of us for

the

> past two years.....and we saw them constantly.......but jobs and

> transfers have changed or are changing this.That us why I said that

> I :ignored: this and just spent time with my grandkids.......now we

> will see them all, but not almost every day.........I need to find

> something else to fill these hours.so I do not " dwell "

>

> My Jim is my strongest..but he is also feeling the pressures of

this

> and I have not found a way to help him....and I need to do this.\

>

>

> Take care,

>

> Kathy

> Florida.....Dx.4/17/07 PF

>

> In Breathe-Support , " Sher Bauman " <bofus@> wrote:

> >

> > Kathy....could you please add your state, Dx to your signature? I

> get mixed up which Kathy I'm talking to. I can't always tell just

by

> content. Thanks.

> > I was here when you first joined. I'm sorry I don't remember your

> details....the board has grown so much.

> > I can relate to the fear you must feel...we all relate.

> > I was one who found I have a fatal disease on the net! Wow!

> > How old are you? Kids? Do you have family close by to be

supportive?

> > Hugs to you

> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> > Don't fret about tomorrow, God is already there!

> >

> > Re: My visit with pulmonologist today

> >

> >

> > Joyce,

> >

> > I felt that hug right down to my toes. Other than the wait

until

> May

> > 14th.......nothing else is happening right now...........i do

> know

> > the 3am wake up and the thoughts. That has been happening alot

> > lately.

> > Thanks again, this is hard.......take care,

> > KAthy

> >

> > -- In Breathe-Support , " Joyce " <janne5303@>

wrote:

> > >

> > >

> > > Kathy,

> > >

> > > We have all felt that prickly fear when we finally let the

> truth

> > set in.

> > > There are several on this board who were told " pulmonary

> fibrosis "

> > and

> > > sent home with no information. When they found it on the net,

> it

> > just

> > > blew thier socks off. How cruel of a doctor to do that to a

> > patient.

> > >

> > > I think it is easy at first when we aren't feeling so awfully

> bad to

> > > ignore the reality of this disease, but as time wears on and

> the

> > disease

> > > begins to progress....we get hit in the face whether we want

to

> > know or

> > > not.

> > >

> > > I do know the fear, the sadness, the grieving....I've walked

> that

> > walk

> > > and still walking. Still wake up in the night scared. Please

> know

> > that

> > > we are here for you and expect that you will be here when we

> need

> > you.

> > > We " get it " ....we live it.

> > >

> > > I am praying that your progression will be slowed or stopped.

> Is

> > there

> > > a plan?

> > >

> > > Big hugs coming your way! [i love God]

> > >

> > >

> > >

> > > 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

> > >

> > >

> > >

> > >

> > > > > > >

> > > > > > > Here is an e mail that we sent out today......just

> wanted to

> > > > > update

> > > > > > > all of you here too. Take care and wishes for easy

> breathing

> > > > going

> > > > > > > out to all of you!

> > > > > > >

> > > > > > >

> > > > > > > To bring you all up to date, Kathy had a new PFT test

> done

> > > > about 2

> > > > > > > weeks ago. This morning we met with the local

> > > > > Pulmonologist .Again,

> > > > > > > this is a mixed bag. The amount of air that her lungs

> can

> > > > hold has

> > > > > > > again decreased. As of April 2006, her lungs could

hold

> 59%

> > > > of

> > > > > where

> > > > > > > they should be, and in October of 2007 it dropped to

> 53%.

> > > > This

> > > > > last

> > > > > > > PFT showed that it has now dropped to 49%. For a

woman

> her

> > > > age and

> > > > > > > weight, Kathy's lungs should hold 4.86 liters of air.

> Hers

> > > > hold

> > > > > 2.38

> > > > > > > liters of air and therefore her lung capacity has

> diminished

> > > > to

> > > > > 49%.

> > > > > > >

> > > > > > > In May, we will go to Shands Hospital to consult with

> the

> > > > > Transplant

> > > > > > > Team. The Doctor we saw today does not believe that

> Kathy

> > has

> > > > > entered

> > > > > > > her last 12 months, which would necessitate a

> transplant. We

> > > > will

> > > > > > > confirm that at Shands.

> > > > > > >

> > > > > > > This news should probably be expected. It is well

> within the

> > > > rate

> > > > > of

> > > > > > > deterioration predicted by the physicians, however it

is

> > > > > > > disappointing to hear that the lung deterioration

> continues.

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Kathy.... married 59 years! WHOOPS! Just caught this......OK...Congratulations on 38 years! That's still rare in this day and age. I've been married to Rich for 15 years. My former husband was killed by a drunk driver, in a stolen car, no insurance and fled the scene! That was about 23 years ago.

This is such a hard thing for your wonderful family isn't it.

I'm so sorry. On the other hand you have a good family to support you and Jim.

Of course he feels the pressure. My husband does too. Can some/one of your kids relieve something he does and give him a break? (mowing the lawn...washing the car...some "man thing"?

No doubt the pressures he feels no one can change. Being together that long he can't imagine himself w/o you.

Are you two able to talk about it? Some men don't like to talk but if he can that might release pressure.

You know what he needs, after all these years......here I am trying to give advice!

I'm so glad you still have each other!

Thanks for adding more info....really helps keep people separated.

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

Re: My visit with pulmonologist today> > > Joyce,> > I felt that hug right down to my toes. Other than the wait until May > 14th.......nothing else is happening right now...........i do know > the 3am wake up and the thoughts. That has been happening alot > lately. > Thanks again, this is hard.......take care,> KAthy> > -- In Breathe-Support , "Joyce" <janne5303@> wrote:> >> > > > Kathy,> > > > We have all felt that prickly fear when we finally let the truth > set in.> > There are several on this board who were told "pulmonary fibrosis" > and> > sent home with no information. When they found it on the net, it > just> > blew thier socks off. How cruel of a doctor to do that to a > patient.> > > > I think it is easy at first when we aren't feeling so awfully bad to> > ignore the reality of this disease, but as time wears on and the > disease> > begins to progress....we get hit in the face whether we want to > know or> > not.> > > > I do know the fear, the sadness, the grieving....I've walked that > walk> > and still walking. Still wake up in the night scared. Please know > that> > we are here for you and expect that you will be here when we need > you. > > We "get it"....we live it.> > > > I am praying that your progression will be slowed or stopped. Is > there> > a plan?> > > > Big hugs coming your way! [i love God]> > > > > > > > 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> > > > > > > > > > > > > >> > > > > > Here is an e mail that we sent out today......just wanted to> > > > update> > > > > > all of you here too. Take care and wishes for easy breathing> > > going> > > > > > out to all of you!> > > > > >> > > > > >> > > > > > To bring you all up to date, Kathy had a new PFT test done> > > about 2> > > > > > weeks ago. This morning we met with the local> > > > Pulmonologist .Again,> > > > > > this is a mixed bag. The amount of air that her lungs can> > > hold has> > > > > > again decreased. As of April 2006, her lungs could hold 59%> > > of> > > > where> > > > > > they should be, and in October of 2007 it dropped to 53%.> > > This> > > > last> > > > > > PFT showed that it has now dropped to 49%. For a woman her> > > age and> > > > > > weight, Kathy's lungs should hold 4.86 liters of air. Hers> > > hold> > > > 2.38> > > > > > liters of air and therefore her lung capacity has diminished> > > to> > > > 49%.> > > > > >> > > > > > In May, we will go to Shands Hospital to consult with the> > > > Transplant> > > > > > Team. The Doctor we saw today does not believe that Kathy > has> > > > entered> > > > > > her last 12 months, which would necessitate a transplant. We> > > will> > > > > > confirm that at Shands.> > > > > >> > > > > > This news should probably be expected. It is well within the> > > rate> > > > of> > > > > > deterioration predicted by the physicians, however it is> > > > > > disappointing to hear that the lung deterioration continues.> > > > > >> > > > >> > > >> > >> >>