Re: TO VATS or NOT TO VATS

[Guest guest]

Boy I wish this discussion was on here last week. I go for the Vats, wedge

resection tomorrow. To tell you the truth, which I would only say here- I hope I

die- I am worth so much more dead than alive, great benefits at my company.

Right now my family is falling apart about tomorrow and I have NOT given them

any reason to- I have been my cheery self at home. They have no idea how I

really feel. My husband has mental problems, suffered a breakdown two years ago

and works part time so I am the breadwinner. My father was on a ventilator for 3

weeks after a triple bypass- will this mean I am at greater risk? I guess it's

too late to change anything.

nne, 55, ILD- 6/09

>

> HI all. I've been out here listening and watching your comments for sometime.

I find the site helpful, informative and interesting.

>

> I am a 58 year of woman with diabetes, acid reflux disease, High blood

pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not confirmed.) I

have been on O2 24/7 since 02/01/09. I am still working and amazingly mobile (

with the help of my husband) and self reliant in most things. Working is

getting more difficult and I will probably give it up this fall or winter.

>

> The Pulmonary Fibrosis DX has not been confirmed because I balked on having a

lung biopsy. I now have 2 pulmonary guys and 1 surgeon saying although there

are some additional risks for me they are 90% sure they can do the scope

procedure and feel it is important to have it done so they can determine weather

I have the type of fibrosis that will respond to steroid treatment. They will

not start me on steroids without the procedure because steroids will definitely

push me into insulin dependancy, and will wreck havoc with my sugar levels.

>

> At this time I am extremely happy with my progress on O2,and feel so much

better that I have in the past year that I am not inclined to rock the boat.

>

> On my next visit to the surgeon if the 3 month followup catscan show I am

pretty much holding my own, I do not intend to have the biopsy. Not because of

the surgical risk, but because of previous experience with steroid side effects.

A bacterial infection treated with steroids in 2002 is the reason I am diabectic

now. I want to put off the use of insulin as long as possible. Of course if

the catscan shows a rapid or marked decline, I will have to reconsider.

>

> I do not know if this is a wise or foolish decision, but I am very concerned

about quality of life over quantity.

>

> If any of you are interested in commenting or relating your experience, I

would much appreciate it.

>

> Thanks,

>

> Margaret, Chandler, AZ

>

[Guest guest]

nne, I am praying for you.. You really need to go into this surgery with a good outlook. It is very important. I can't wrap my headaround you hope you die... wrong feeling.. yours but I am just heart broken for you. Is there anyone outside your home that could step in and help you ? Please just pray and I know there is an answer for you. Joy comes in the Morning. God Bless you with strength and peace. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Boy I wish this discussion was on here last week. I go for the Vats, wedge resection tomorrow. To tell you the truth, which I would only say here- I hope I die- I am worth so much more dead than alive, great benefits at my company. Right now my family is falling apart about tomorrow and I have NOT given them any reason to- I have been my cheery self at home. They have no idea how I really feel. My husband has mental problems, suffered a breakdown two years ago and works part time so I am the breadwinner. My father was on a ventilator for 3 weeks after a triple bypass- will this mean I am at greater risk? I guess it's too late to change anything. nne, 55, ILD- 6/09 > > HI all. I've been out here listening and watching your comments for sometime. I find the site helpful, informative and interesting. > > I am a 58 year of woman with diabetes, acid reflux disease, High blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not confirmed.) I have been on O2 24/7 since 02/01/09. I am still working and amazingly mobile ( with the help of my husband) and self reliant in most things. Working is getting more difficult and I will probably give it up this fall or winter. > > The Pulmonary Fibrosis DX has not been confirmed because I balked on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon saying although there are some additional risks for me they are 90% sure they can do the scope procedure and feel it is important to have it done so they can determine weather I have the type of fibrosis that will respond to steroid treatment. They will not start me on steroids without the procedure because steroids will definitely push me into insulin dependancy, and will wreck havoc with my sugar levels. > > At this time I am extremely happy with my progress on O2,and feel so much better that I have in the past year that I am not inclined to rock the boat. > > On my next visit to the surgeon if the 3 month followup catscan show I am pretty much holding my own, I do not intend to have the biopsy. Not because of the surgical risk, but because of previous experience with steroid side effects. A bacterial infection treated with steroids in 2002 is the reason I am diabectic now. I want to put off the use of insulin as long as possible. Of course if the catscan shows a rapid or marked decline, I will have to reconsider. > > I do not know if this is a wise or foolish decision, but I am very concerned about quality of life over quantity. > > If any of you are interested in commenting or relating your experience, I would much appreciate it. > > Thanks, > > Margaret, Chandler, AZ >

[Guest guest]

nne... I feel sad that you are going into surgery wishing you could die and that your family has no idea how you really feel...so you have stuffed a bunch-of-stuff!

I can second guess the stress you are feeling with your husband's mental problems/fearful of another breakdown...

Being the breadwinner only adds more stress on you.

In my personal opinion, it's never to late to change anything if you feel in your gut something needs changing!

I'm praying for you and I will ask God to especially give you clear thinking about the Vats.

Let your feelings out here nne, we understand and care...

Love,

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

Re: TO VATS or NOT TO VATS

Boy I wish this discussion was on here last week. I go for the Vats, wedge resection tomorrow. To tell you the truth, which I would only say here- I hope I die- I am worth so much more dead than alive, great benefits at my company. Right now my family is falling apart about tomorrow and I have NOT given them any reason to- I have been my cheery self at home. They have no idea how I really feel. My husband has mental problems, suffered a breakdown two years ago and works part time so I am the breadwinner. My father was on a ventilator for 3 weeks after a triple bypass- will this mean I am at greater risk? I guess it's too late to change anything.nne, 55, ILD- 6/09>> HI all. I've been out here listening and watching your comments for sometime. I find the site helpful, informative and interesting.> > I am a 58 year of woman with diabetes, acid reflux disease, High blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not confirmed.) I have been on O2 24/7 since 02/01/09. I am still working and amazingly mobile ( with the help of my husband) and self reliant in most things. Working is getting more difficult and I will probably give it up this fall or winter.> > The Pulmonary Fibrosis DX has not been confirmed because I balked on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon saying although there are some additional risks for me they are 90% sure they can do the scope procedure and feel it is important to have it done so they can determine weather I have the type of fibrosis that will respond to steroid treatment. They will not start me on steroids without the procedure because steroids will definitely push me into insulin dependancy, and will wreck havoc with my sugar levels. > > At this time I am extremely happy with my progress on O2,and feel so much better that I have in the past year that I am not inclined to rock the boat.> > On my next visit to the surgeon if the 3 month followup catscan show I am pretty much holding my own, I do not intend to have the biopsy. Not because of the surgical risk, but because of previous experience with steroid side effects. A bacterial infection treated with steroids in 2002 is the reason I am diabectic now. I want to put off the use of insulin as long as possible. Of course if the catscan shows a rapid or marked decline, I will have to reconsider. > > I do not know if this is a wise or foolish decision, but I am very concerned about quality of life over quantity. > > If any of you are interested in commenting or relating your experience, I would much appreciate it.> > Thanks,> > Margaret, Chandler, AZ>

[Guest guest]

The weird thing is Peggy, I am feeling this way with no emotion whatsoever.

Like, Mr Spock in Star Trek- that it would be logical if I passed away and all

the insurance money would be there for my family. I'm just going to be a burden

on them- my symptoms are getting so BAD- out of breath as I sit here typing. A

nurse called yesterday asking me if someone is at home to care for me. I said

yes but the answer is NO- my kids all work and my husband just sits in front of

computer or TV in la-la land. I have no family other than my mom who's 78,

healthy physically but not mentally and anyway what can she do. The surgeon

couldn't believe I wasn't on oxygen and still working since my PFT is " bad " as

he put it. Anyway I do love life and I will try to stay as positive as I can. I

do have some friends who may be able to help if I need help- hopefully I won't.

Thank you so much for writing.

> >

> > HI all. I've been out here listening and watching your comments

> for sometime. I find the site helpful, informative and interesting.

> >

> > I am a 58 year of woman with diabetes, acid reflux disease, High

> blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not

> confirmed.) I have been on O2 24/7 since 02/01/09. I am still working

> and amazingly mobile ( with the help of my husband) and self reliant

> in most things. Working is getting more difficult and I will probably

> give it up this fall or winter.

> >

> > The Pulmonary Fibrosis DX has not been confirmed because I balked

> on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon

> saying although there are some additional risks for me they are 90%

> sure they can do the scope procedure and feel it is important to have

> it done so they can determine weather I have the type of fibrosis

> that will respond to steroid treatment. They will not start me on

> steroids without the procedure because steroids will definitely push

> me into insulin dependancy, and will wreck havoc with my sugar levels.

> >

> > At this time I am extremely happy with my progress on O2,and feel

> so much better that I have in the past year that I am not inclined to

> rock the boat.

> >

> > On my next visit to the surgeon if the 3 month followup catscan

> show I am pretty much holding my own, I do not intend to have the

> biopsy. Not because of the surgical risk, but because of previous

> experience with steroid side effects. A bacterial infection treated

> with steroids in 2002 is the reason I am diabectic now. I want to put

> off the use of insulin as long as possible. Of course if the catscan

> shows a rapid or marked decline, I will have to reconsider.

> >

> > I do not know if this is a wise or foolish decision, but I am very

> concerned about quality of life over quantity.

> >

> > If any of you are interested in commenting or relating your

> experience, I would much appreciate it.

> >

> > Thanks,

> >

> > Margaret, Chandler, AZ

> >

>

[Guest guest]

nne, You are going to a Pulmonary Dr right ?? Where is the world is the oxygen.. Oh I am sending big warm hugs your way. Beth ask if you have been evaluated at a University Hosp. That is where a lot of us go.You do know if you are not up for this surgery you do not have to have it. You can say no. Are you comfortable with your Dr's and surgeon?Take Care of You. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. The weird thing is Peggy, I am feeling this way with no emotion whatsoever. Like, Mr Spock in Star Trek- that it would be logical if I passed away and all the insurance money would be there for my family. I'm just going to be a burden on them- my symptoms are getting so BAD- out of breath as I sit here typing. A nurse called yesterday asking me if someone is at home to care for me. I said yes but the answer is NO- my kids all work and my husband just sits in front of computer or TV in la-la land. I have no family other than my mom who's 78, healthy physically but not mentally and anyway what can she do. The surgeon couldn't believe I wasn't on oxygen and still working since my PFT is "bad" as he put it. Anyway I do love life and I will try to stay as positive as I can. I do have some friends who may be able to help if I need help- hopefully I won't. Thank you so much for writing. > > > > HI all. I've been out here listening and watching your comments > for sometime. I find the site helpful, informative and interesting. > > > > I am a 58 year of woman with diabetes, acid reflux disease, High > blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not > confirmed.) I have been on O2 24/7 since 02/01/09. I am still working > and amazingly mobile ( with the help of my husband) and self reliant > in most things. Working is getting more difficult and I will probably > give it up this fall or winter. > > > > The Pulmonary Fibrosis DX has not been confirmed because I balked > on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon > saying although there are some additional risks for me they are 90% > sure they can do the scope procedure and feel it is important to have > it done so they can determine weather I have the type of fibrosis > that will respond to steroid treatment. They will not start me on > steroids without the procedure because steroids will definitely push > me into insulin dependancy, and will wreck havoc with my sugar levels. > > > > At this time I am extremely happy with my progress on O2,and feel > so much better that I have in the past year that I am not inclined to > rock the boat. > > > > On my next visit to the surgeon if the 3 month followup catscan > show I am pretty much holding my own, I do not intend to have the > biopsy. Not because of the surgical risk, but because of previous > experience with steroid side effects. A bacterial infection treated > with steroids in 2002 is the reason I am diabectic now. I want to put > off the use of insulin as long as possible. Of course if the catscan > shows a rapid or marked decline, I will have to reconsider. > > > > I do not know if this is a wise or foolish decision, but I am very > concerned about quality of life over quantity. > > > > If any of you are interested in commenting or relating your > experience, I would much appreciate it. > > > > Thanks, > > > > Margaret, Chandler, AZ > > >

[Guest guest]

nne, do not think this way as it will get you into more of a fit than you

already are. For one thing how do you know they will be better off,you wont be

here to see them. Is that any good,NO. Put your faith in something positive.

People want to help, just open the door a crack and let them in. You will be

surprised at their kindness. Dont keep your family in the dark, let them know.

From my short time in the group I have seen the love that they share and they

will try and alleviate any of your fears. Let your love of life give you

strength and when you come out of surgery,and you will, attack life and live it

your way. Looking forward to reading your posts afterwards.All our prayers are

with you.

Merf 61 IPF 05

> > >

> > > HI all. I've been out here listening and watching your comments

> > for sometime. I find the site helpful, informative and interesting.

> > >

> > > I am a 58 year of woman with diabetes, acid reflux disease, High

> > blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not

> > confirmed.) I have been on O2 24/7 since 02/01/09. I am still working

> > and amazingly mobile ( with the help of my husband) and self reliant

> > in most things. Working is getting more difficult and I will probably

> > give it up this fall or winter.

> > >

> > > The Pulmonary Fibrosis DX has not been confirmed because I balked

> > on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon

> > saying although there are some additional risks for me they are 90%

> > sure they can do the scope procedure and feel it is important to have

> > it done so they can determine weather I have the type of fibrosis

> > that will respond to steroid treatment. They will not start me on

> > steroids without the procedure because steroids will definitely push

> > me into insulin dependancy, and will wreck havoc with my sugar

> levels.

> > >

> > > At this time I am extremely happy with my progress on O2,and feel

> > so much better that I have in the past year that I am not inclined to

> > rock the boat.

> > >

> > > On my next visit to the surgeon if the 3 month followup catscan

> > show I am pretty much holding my own, I do not intend to have the

> > biopsy. Not because of the surgical risk, but because of previous

> > experience with steroid side effects. A bacterial infection treated

> > with steroids in 2002 is the reason I am diabectic now. I want to put

> > off the use of insulin as long as possible. Of course if the catscan

> > shows a rapid or marked decline, I will have to reconsider.

> > >

> > > I do not know if this is a wise or foolish decision, but I am very

> > concerned about quality of life over quantity.

> > >

> > > If any of you are interested in commenting or relating your

> > experience, I would much appreciate it.

> > >

> > > Thanks,

> > >

> > > Margaret, Chandler, AZ

> > >

> >

>

[Guest guest]

maryanne

get a journal and start writing

it can be good therapy

it is extremely scary in the beginning

but we learn to live with it

if you need to talk, there are phone numbers on one of yhe contact lists

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re: TO VATS or NOT TO VATSTo: Breathe-Support Date: Tuesday, July 21, 2009, 1:44 PM

nne, I am praying for you.. You really need to go into this surgery with a good outlook. It is very important. I can't wrap my head

around you hope you die... wrong feeling.. yours but I am just heart broken for you. Is there anyone outside your home that could step in and help you ? Please just pray and I know there is an answer for you. Joy comes in the Morning. God Bless you with strength and peace.

Love and Prayers, Peggy

IPF 2004, Florida

Worry looks around,

Sorry looks back,

Faith looks up.

Boy I wish this discussion was on here last week. I go for the Vats, wedge resection tomorrow. To tell you the truth, which I would only say here- I hope I die- I am worth so much more dead than alive, great benefits at my company. Right now my family is falling apart about tomorrow and I have NOT given them any reason to- I have been my cheery self at home. They have no idea how I really feel. My husband has mental problems, suffered a breakdown two years ago and works part time so I am the breadwinner. My father was on a ventilator for 3 weeks after a triple bypass- will this mean I am at greater risk? I guess it's too late to change anything.nne, 55, ILD- 6/09>> HI all. I've been out here listening and watching your comments for sometime. I find the site helpful, informative and interesting.> > I am a 58 year of woman with diabetes, acid reflux disease, High blood pressure, sleep apnea, obesity and pulmonary fibrosis ( DX not confirmed.) I have been on O2 24/7 since 02/01/09. I am still working and amazingly mobile ( with the help of my husband) and self reliant in most things. Working is getting more difficult and I will probably give it up this fall or winter.> > The Pulmonary Fibrosis DX has not been confirmed because I balked on having a lung biopsy. I now have 2 pulmonary guys and 1 surgeon saying although there are some additional risks for me they are 90% sure they can do the scope procedure and feel it is important to have it done so they can determine weather I have the type of fibrosis that will respond to steroid treatment. They will not start me on

steroids without the procedure because steroids will definitely push me into insulin dependancy, and will wreck havoc with my sugar levels. > > At this time I am extremely happy with my progress on O2,and feel so much better that I have in the past year that I am not inclined to rock the boat.> > On my next visit to the surgeon if the 3 month followup catscan show I am pretty much holding my own, I do not intend to have the biopsy. Not because of the surgical risk, but because of previous experience with steroid side effects. A bacterial infection treated with steroids in 2002 is the reason I am diabectic now. I want to put off the use of insulin as long as possible. Of course if the catscan shows a rapid or marked decline, I will have to reconsider. > > I do not know if this is a wise or foolish decision, but I am very concerned about quality of life over quantity. > > If any of you are interested

in commenting or relating your experience, I would much appreciate it.> > Thanks,> > Margaret, Chandler, AZ>