Re: Hi: New here

[Guest guest]

Hi I'm Peggy and seem to be very gabby today. lol. I am so sorry your husband has been

diagnosed with this disease. I have 3 children, 8 Grandchildren

When I was diagnosed I told ALL ( my children first) of them I do not want this to make a

dark place in this family.

God has his own timing. Anyhow my G-Kids know about the whole mess but I do not let this

depress me or make it hard for the kids to come to visit. I always think honesty is the best

policy and tell the children as much as they can handle. My 10 year old was not told as much

Our whole family is grieving but since we're all up to date on this horrible disease

we support each other. I think your heart will tell you how much to tell them.

All the machines you list are brand names. The same but a little different.. I'm not the one to

explain it.. sorry. God Bless and Keep your family in his hand. I'll be praying. Peggy

on 3/16/06 4:20 PM, at cmjonesohio@... wrote:

Hi all,

My husband(46)was diagnosed with IPF in January of this year.

I've been reading all of your posts for about a month now, and you've

already helped me so much without even knowing it. Because of this

site I knew just what questions to ask the pulmonologist when I went

with my husband in February. It sure does pay to be informed,

because I realized right away how little that particular doctor knew

about this disease and how UNhelpful she would be! Long story short,

my husband (Mike) now has a FANTASTIC doctor whom I met yesterday. I

do have two questions at the moment I was hoping some of you might be

able to help me with.

The first one is about oxygen. Mike's PFT on Monday showed that

he is ready for O2 at this point (I think 3L during sleep and

activity). The company we will be using is Apria (he already has a

BiPap maching through them). I'm confused by all the different types

I've seen several of you mention: Inogen, Marathon, Helios, etc. Are

these simply different brand names of the same basic machine? Also,

what are some other basic things I should be aware of in case they

give us any choices?

My second question is for those of you who still have fairly

young children at home. Our two boys are 12 and 8, and we are still

trying to figure out how much information to share and how soon.

They already know their dad doesn't just have a temporary problem

like a cold and that his " lungs don't work as well as they used to " .

Of course as soon as Mike is set up with the oxygen they'll have to

adjust to that as well. I just feel like we're not giving the 12yo

enough information. He hasn't been asking questions, but I don't

want him to start trying to 'fill in the blanks' for himself either.

I also don't see any point in scaring them prematurely. Yes, this is

a terminal illness, but it's so unpredictable that could still be 10

or 20 years down the road. Any advice here?

I really value all of your opinions so much!! I used to hate

the internet, but now I must admit at times it can be a wonderful

thing. Sorry to be so long winded, no pun intended ;-) I promise

future posts will be shorter.

[Guest guest]

Hi I am also new to the group(see #973) and reading the old

postings my wife and I are horrified about some of the Dr stories

that some people have gone through. (Like giving a diagnosis but not

mentioning that it is a terminal disease and letting the patient go

home and look it up on their own) We have been lucky,in that I went

to the Pulmonary specialist when my GP couldn't clear up

my " bacterial pneumonia " back in Nov. The FIRST DAY he said it doesnt

make sense but you could have pulmanary fibrosis. Procrastination and

a belief that it may have been hypersensitivity pneumonitis prevented

me from getting the biopsy until late Jan. At least in the back of my

head I had a couple of months to prepare for the answer. Anyway I

just wanted to say I'm glad that you found a good doctor and to

encourage everyone else who may be going through this to find a

doctor who takes it as seriously as it is. I don't think they know

much about it but they can at least treat us like human beings. Tom

>

> Hi all,

> My husband(46)was diagnosed with IPF in January of this

year.

> I've been reading all of your posts for about a month now, and

you've

> already helped me so much without even knowing it. Because of this

> site I knew just what questions to ask the pulmonologist when I

went

> with my husband in February. It sure does pay to be informed,

> because I realized right away how little that particular doctor

knew

> about this disease and how UNhelpful she would be! Long story

short,

> my husband (Mike) now has a FANTASTIC doctor whom I met yesterday.

I

> do have two questions at the moment I was hoping some of you might

be

> able to help me with.

> The first one is about oxygen. Mike's PFT on Monday showed

that

> he is ready for O2 at this point (I think 3L during sleep and

> activity). The company we will be using is Apria (he already has a

> BiPap maching through them). I'm confused by all the different

types

> I've seen several of you mention: Inogen, Marathon, Helios, etc.

Are

> these simply different brand names of the same basic machine?

Also,

> what are some other basic things I should be aware of in case they

> give us any choices?

> My second question is for those of you who still have fairly

> young children at home. Our two boys are 12 and 8, and we are

still

> trying to figure out how much information to share and how soon.

> They already know their dad doesn't just have a temporary problem

> like a cold and that his " lungs don't work as well as they used

to " .

> Of course as soon as Mike is set up with the oxygen they'll have to

> adjust to that as well. I just feel like we're not giving the 12yo

> enough information. He hasn't been asking questions, but I don't

> want him to start trying to 'fill in the blanks' for himself

either.

> I also don't see any point in scaring them prematurely. Yes, this

is

> a terminal illness, but it's so unpredictable that could still be

10

> or 20 years down the road. Any advice here?

> I really value all of your opinions so much!! I used to hate

> the internet, but now I must admit at times it can be a wonderful

> thing. Sorry to be so long winded, no pun intended ;-) I promise

> future posts will be shorter.

> Chris

>

[Guest guest]

Hi

I have pulmonary fibrosis, but it is secondary to autoimmune disease, one being Lupus. I am treated for the cause of the fibrosis as well as the disease itself. It has been eight years since diagnosis. No two cases are alike. My primary advice is to place your faith in God. The second is to educate yourself and the third is to manage your own disease (your husband's) yourself. Keep records, get copies of reports and labwork.

I have had some horrible doctor experiences throughout my life and especially throughout this disease. I see an excellent doctor now and he is such a compassionate person. That means a lot when you are shaking in your boots.

I am glad you are reading our posts. I have learned a lot in a short time here. Before I began using my computer/internet, I would go to the public library and carry home armloads of books. Doctors talk to you intelligently if they think you know what they know!

Read some of the posts about oxygen and read online. I am back on the small tanks and a concentrator. I go out with friends, to church and run the grandkids around. Some days just a drive in the sunshine is heavenly.

I pray that your husband's illness is responsive to treatment. You will know how to talk to the kids. Mommy's just know. My love and prayers are with your entire family. Stay strong and fight the fight!

Hugs,

Joyce

> >> > Hi all,> > My husband(46)was diagnosed with IPF in January of this > year. > > I've been reading all of your posts for about a month now, and > you've > > already helped me so much without even knowing it. Because of this > > site I knew just what questions to ask the pulmonologist when I > went > > with my husband in February. It sure does pay to be informed, > > because I realized right away how little that particular doctor > knew > > about this disease and how UNhelpful she would be! Long story > short, > > my husband (Mike) now has a FANTASTIC doctor whom I met yesterday. > I > > do have two questions at the moment I was hoping some of you might > be > > able to help me with. > > The first one is about oxygen. Mike's PFT on Monday showed > that > > he is ready for O2 at this point (I think 3L during sleep and > > activity). The company we will be using is Apria (he already has a > > BiPap maching through them). I'm confused by all the different > types > > I've seen several of you mention: Inogen, Marathon, Helios, etc. > Are > > these simply different brand names of the same basic machine? > Also, > > what are some other basic things I should be aware of in case they > > give us any choices?> > My second question is for those of you who still have fairly > > young children at home. Our two boys are 12 and 8, and we are > still > > trying to figure out how much information to share and how soon. > > They already know their dad doesn't just have a temporary problem > > like a cold and that his "lungs don't work as well as they used > to". > > Of course as soon as Mike is set up with the oxygen they'll have to > > adjust to that as well. I just feel like we're not giving the 12yo > > enough information. He hasn't been asking questions, but I don't > > want him to start trying to 'fill in the blanks' for himself > either. > > I also don't see any point in scaring them prematurely. Yes, this > is > > a terminal illness, but it's so unpredictable that could still be > 10 > > or 20 years down the road. Any advice here?> > I really value all of your opinions so much!! I used to hate > > the internet, but now I must admit at times it can be a wonderful > > thing. Sorry to be so long winded, no pun intended ;-) I promise > > future posts will be shorter.> > Chris> >>

[Guest guest]

Tom,

The doctor at time of biopsy told my family 2-4 years,(has been 8) but I too had to find that out from other information. I just don't think some doctors have the courage to say the words, especially to someone young, like yourself.

Hugs to you,

Joyce

> >> > Hi all,> > My husband(46)was diagnosed with IPF in January of this > year. > > I've been reading all of your posts for about a month now, and > you've > > already helped me so much without even knowing it. Because of this > > site I knew just what questions to ask the pulmonologist when I > went > > with my husband in February. It sure does pay to be informed, > > because I realized right away how little that particular doctor > knew > > about this disease and how UNhelpful she would be! Long story > short, > > my husband (Mike) now has a FANTASTIC doctor whom I met yesterday. > I > > do have two questions at the moment I was hoping some of you might > be > > able to help me with. > > The first one is about oxygen. Mike's PFT on Monday showed > that > > he is ready for O2 at this point (I think 3L during sleep and > > activity). The company we will be using is Apria (he already has a > > BiPap maching through them). I'm confused by all the different > types > > I've seen several of you mention: Inogen, Marathon, Helios, etc. > Are > > these simply different brand names of the same basic machine? > Also, > > what are some other basic things I should be aware of in case they > > give us any choices?> > My second question is for those of you who still have fairly > > young children at home. Our two boys are 12 and 8, and we are > still > > trying to figure out how much information to share and how soon. > > They already know their dad doesn't just have a temporary problem > > like a cold and that his "lungs don't work as well as they used > to". > > Of course as soon as Mike is set up with the oxygen they'll have to > > adjust to that as well. I just feel like we're not giving the 12yo > > enough information. He hasn't been asking questions, but I don't > > want him to start trying to 'fill in the blanks' for himself > either. > > I also don't see any point in scaring them prematurely. Yes, this > is > > a terminal illness, but it's so unpredictable that could still be > 10 > > or 20 years down the road. Any advice here?> > I really value all of your opinions so much!! I used to hate > > the internet, but now I must admit at times it can be a wonderful > > thing. Sorry to be so long winded, no pun intended ;-) I promise > > future posts will be shorter.> > Chris> >>

[Guest guest]

Welcome aboard ! My name is Bonnie, I'm a social worker and have

spent most of my life working with children, just felt like I had to

respond to your delimma. Your fear that the children will " fill in

the blanks " if you don't give them info is a real one. They'll get

info from someone, their friends, the internet, and the info they

get may not be right. You will not be able to relieve them of all

the fear. You're right, this is a terminal illness, but, like any

other illness, we don't know when terminal will be. The other side

of the coin, is that you don't want to tell them more than they want

to know. The 12 y/o & the 8 y/o will probably need different amts &

depth of info. Give them a short, basic rundown of the disease,

don't use the word terminal, but do tell them that it is a disease

Mike & all of you will have to live with forever; that the O2

machines will be make Dad feel better but that dragging it around

will limit or change how you do the activities that you do as a

family. Ask them what they want to know. Set it up so that, as

questions occur to them, they feel free to get the information for

you or Mike. This is a reality that you cannot protect them from.

If your spouse is like me, he either has been or will get to the

place that he catches every respiratory virus or bacteria that's

going around and every sinus infection may become bronchitis or

pneumonia. Children are intuitive; they know when we're keeping

secrets from them and they generally resent it. They are your

family, thus they'll cope better if they're included. When one of

them asks you if Daddy's going to die, tell the truth - yes, but

none of us knows how or when. Try to teach them to take it one day

at a time and keep their lives as normal as possible. Again, set it

up so that they can ask you or Mike for information. Check in with

them periodically. I hope that Mike can find activities to continue

to be involved with the boys. Good luck to you both.

>

> Hi all,

> My husband(46)was diagnosed with IPF in January of this

year.

> I've been reading all of your posts for about a month now, and

you've

> already helped me so much without even knowing it. Because of

this

> site I knew just what questions to ask the pulmonologist when I

went

> with my husband in February. It sure does pay to be informed,

> because I realized right away how little that particular doctor

knew

> about this disease and how UNhelpful she would be! Long story

short,

> my husband (Mike) now has a FANTASTIC doctor whom I met

yesterday. I

> do have two questions at the moment I was hoping some of you might

be

> able to help me with.

> The first one is about oxygen. Mike's PFT on Monday showed

that

> he is ready for O2 at this point (I think 3L during sleep and

> activity). The company we will be using is Apria (he already has

a

> BiPap maching through them). I'm confused by all the different

types

> I've seen several of you mention: Inogen, Marathon, Helios, etc.

Are

> these simply different brand names of the same basic machine?

Also,

> what are some other basic things I should be aware of in case they

> give us any choices?

> My second question is for those of you who still have fairly

> young children at home. Our two boys are 12 and 8, and we are

still

> trying to figure out how much information to share and how soon.

> They already know their dad doesn't just have a temporary problem

> like a cold and that his " lungs don't work as well as they used

to " .

> Of course as soon as Mike is set up with the oxygen they'll have

to

> adjust to that as well. I just feel like we're not giving the

12yo

> enough information. He hasn't been asking questions, but I don't

> want him to start trying to 'fill in the blanks' for himself

either.

> I also don't see any point in scaring them prematurely. Yes, this

is

> a terminal illness, but it's so unpredictable that could still be

10

> or 20 years down the road. Any advice here?

> I really value all of your opinions so much!! I used to hate

> the internet, but now I must admit at times it can be a wonderful

> thing. Sorry to be so long winded, no pun intended ;-) I promise

> future posts will be shorter.

> Chris

>

[Guest guest]

Once in a while we just pass each other and just grab and hold on and cry for two min.

You are so blessed, Peggy to have him hold and comfort you. I miss that so much. Cherish the moments, hon.

Kiss Kiss,

~Ginger~

[Guest guest]

Oh Bonnie,

You don't know how much your response meant to

me...I think Mike and I have somewhat been in denial

about the whole thing up until more recently. I cried

when I read your e-mail, it made it all so REAL...I've

been surprised that the boys are NOT asking questions,

which is why I asked others for advice. I think their

lack of questions has probably been their own form of

denial ( " what I don't know can't hurt me " ). My

husband can't discuss the subject in concrete terms

without getting 'choked up' to the point of not being

able to talk, which is why I guess it's sort of up to

me to provide the heart-to-heart talks with the boys.

It's just so HARD, but I do feel us becoming a

stronger family because of it. It's funny how many of

us just sort of skate along through life, not really

looking for any real meaning in anything and taking so

much for granted. Before all of this happened if

someone had asked me if I had a good marriage I would

have just thought, " yeah, it's okay " . We've been

married for 15 years this April (I know some of you

are thinking " only a measly little 15 years, that's

nothing! " ) and when I look back at some of the stupid

arguments we had over piddly little crap I realize how

true the saying 'don't sweat the small stuff' is! I

know I'm rambling....sorry...I guess I'm just in a

very philosophical mood about the whole thing today.

Does anyone else here feel themselves going through

stages (shock, panic, anger, denial, defeat, resolve,

peace, acceptance, etc.). I could probably name a

dozen more...sometimes I think I'm feeling them all at

once. I know I'm not the one physically experiencing

the disease... I apologize if any of you are thinking

" what right does SHE have to talk. " ... anyway, I guess

I better get off my soap box now...I'm just so

thankful for this group...I wish my husband would

join, I'm afraid he keeps too much bottled up inside

which doesn't help his condition at all...I think I'll

go have a good cry now while the kids are outside

playing...thanks for listening...

Chris

--- Bonnie Faulkner wrote:

> Welcome aboard ! My name is Bonnie, I'm a social

> worker and have

> spent most of my life working with children, just

> felt like I had to

> respond to your delimma. Your fear that the

> children will " fill in

> the blanks " if you don't give them info is a real

> one. They'll get

> info from someone, their friends, the internet, and

> the info they

> get may not be right. You will not be able to

> relieve them of all

> the fear. You're right, this is a terminal illness,

> but, like any

> other illness, we don't know when terminal will be.

> The other side

> of the coin, is that you don't want to tell them

> more than they want

> to know. The 12 y/o & the 8 y/o will probably need

> different amts &

> depth of info. Give them a short, basic rundown of

> the disease,

> don't use the word terminal, but do tell them that

> it is a disease

> Mike & all of you will have to live with forever;

> that the O2

> machines will be make Dad feel better but that

> dragging it around

> will limit or change how you do the activities that

> you do as a

> family. Ask them what they want to know. Set it up

> so that, as

> questions occur to them, they feel free to get the

> information for

> you or Mike. This is a reality that you cannot

> protect them from.

> If your spouse is like me, he either has been or

> will get to the

> place that he catches every respiratory virus or

> bacteria that's

> going around and every sinus infection may become

> bronchitis or

> pneumonia. Children are intuitive; they know when

> we're keeping

> secrets from them and they generally resent it.

> They are your

> family, thus they'll cope better if they're

> included. When one of

> them asks you if Daddy's going to die, tell the

> truth - yes, but

> none of us knows how or when. Try to teach them to

> take it one day

> at a time and keep their lives as normal as

> possible. Again, set it

> up so that they can ask you or Mike for information.

> Check in with

> them periodically. I hope that Mike can find

> activities to continue

> to be involved with the boys. Good luck to you

> both.

>

>

> >

> > Hi all,

> > My husband(46)was diagnosed with IPF in

> January of this

> year.

> > I've been reading all of your posts for about a

> month now, and

> you've

> > already helped me so much without even knowing it.

> Because of

> this

> > site I knew just what questions to ask the

> pulmonologist when I

> went

> > with my husband in February. It sure does pay to

> be informed,

> > because I realized right away how little that

> particular doctor

> knew

> > about this disease and how UNhelpful she would be!

> Long story

> short,

> > my husband (Mike) now has a FANTASTIC doctor whom

> I met

> yesterday. I

> > do have two questions at the moment I was hoping

> some of you might

> be

> > able to help me with.

> > The first one is about oxygen. Mike's PFT on

> Monday showed

> that

> > he is ready for O2 at this point (I think 3L

> during sleep and

> > activity). The company we will be using is Apria

> (he already has

> a

> > BiPap maching through them). I'm confused by all

> the different

> types

> > I've seen several of you mention: Inogen,

> Marathon, Helios, etc.

> Are

> > these simply different brand names of the same

> basic machine?

> Also,

> > what are some other basic things I should be aware

> of in case they

> > give us any choices?

> > My second question is for those of you who

> still have fairly

> > young children at home. Our two boys are 12 and

> 8, and we are

> still

> > trying to figure out how much information to share

> and how soon.

> > They already know their dad doesn't just have a

> temporary problem

> > like a cold and that his " lungs don't work as well

> as they used

> to " .

> > Of course as soon as Mike is set up with the

> oxygen they'll have

> to

> > adjust to that as well. I just feel like we're

> not giving the

> 12yo

> > enough information. He hasn't been asking

> questions, but I don't

> > want him to start trying to 'fill in the blanks'

> for himself

> either.

> > I also don't see any point in scaring them

> prematurely. Yes, this

> is

> > a terminal illness, but it's so unpredictable that

> could still be

> 10

> > or 20 years down the road. Any advice here?

> > I really value all of your opinions so much!!

> I used to hate

> > the internet, but now I must admit at times it can

> be a wonderful

> > thing. Sorry to be so long winded, no pun

> intended ;-) I promise

> > future posts will be shorter.

> > Chris

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Yes I think we all have those same thoughts and feelings. I do not

allow myself to have pity parities. I do understand the Unbelief that this

has happened to you. Try to get the most of each and every min. of every day.

Don't let gloom move into your mine. Honey I hope this doesn't sound hard it's

just so hard for each and every one of us to deal with this.

I have been with my hubby 40 years and the thoughts of him trying to do for

himself.. REALLY hard. Once in a while we just pass each other and just grab and hold on and cry for two min. then we get on to making something good of the day. We Moved here two years ago, have a new home and are supposed to grow REALLY old together. BUT God has other plans so I trust him that things will work out to his Glory. I will certainly be asking him what this is all about when I get there. God Bless and help you. Peggy

on 3/27/06 1:14 PM, at cmjonesohio@... wrote:

Oh Bonnie,

You don't know how much your response meant to

me...I think Mike and I have somewhat been in denial

about the whole thing up until more recently. I cried

when I read your e-mail, it made it all so REAL...I've

been surprised that the boys are NOT asking questions,

which is why I asked others for advice. I think their

lack of questions has probably been their own form of

denial ( " what I don't know can't hurt me " ). My

husband can't discuss the subject in concrete terms

without getting 'choked up' to the point of not being

able to talk, which is why I guess it's sort of up to

me to provide the heart-to-heart talks with the boys.

It's just so HARD, but I do feel us becoming a

stronger family because of it. It's funny how many of

us just sort of skate along through life, not really

looking for any real meaning in anything and taking so

much for granted. Before all of this happened if

someone had asked me if I had a good marriage I would

have just thought, " yeah, it's okay " . We've been

married for 15 years this April (I know some of you

are thinking " only a measly little 15 years, that's

nothing! " ) and when I look back at some of the stupid

arguments we had over piddly little crap I realize how

true the saying 'don't sweat the small stuff' is! I

know I'm rambling....sorry...I guess I'm just in a

very philosophical mood about the whole thing today.

Does anyone else here feel themselves going through

stages (shock, panic, anger, denial, defeat, resolve,

peace, acceptance, etc.). I could probably name a

dozen more...sometimes I think I'm feeling them all at

once. I know I'm not the one physically experiencing

the disease... I apologize if any of you are thinking

" what right does SHE have to talk. " ... anyway, I guess

I better get off my soap box now...I'm just so

thankful for this group...I wish my husband would

join, I'm afraid he keeps too much bottled up inside

which doesn't help his condition at all...I think I'll

go have a good cry now while the kids are outside

playing...thanks for listening...

--- Bonnie Faulkner wrote:

> Welcome aboard ! My name is Bonnie, I'm a social

> worker and have

> spent most of my life working with children, just

> felt like I had to

> respond to your delimma. Your fear that the

> children will " fill in

> the blanks " if you don't give them info is a real

> one. They'll get

> info from someone, their friends, the internet, and

> the info they

> get may not be right. You will not be able to

> relieve them of all

> the fear. You're right, this is a terminal illness,

> but, like any

> other illness, we don't know when terminal will be.

> The other side

> of the coin, is that you don't want to tell them

> more than they want

> to know. The 12 y/o & the 8 y/o will probably need

> different amts &

> depth of info. Give them a short, basic rundown of

> the disease,

> don't use the word terminal, but do tell them that

> it is a disease

> Mike & all of you will have to live with forever;

> that the O2

> machines will be make Dad feel better but that

> dragging it around

> will limit or change how you do the activities that

> you do as a

> family. Ask them what they want to know. Set it up

> so that, as

> questions occur to them, they feel free to get the

> information for

> you or Mike. This is a reality that you cannot

> protect them from.

> If your spouse is like me, he either has been or

> will get to the

> place that he catches every respiratory virus or

> bacteria that's

> going around and every sinus infection may become

> bronchitis or

> pneumonia. Children are intuitive; they know when

> we're keeping

> secrets from them and they generally resent it.

> They are your

> family, thus they'll cope better if they're

> included. When one of

> them asks you if Daddy's going to die, tell the

> truth - yes, but

> none of us knows how or when. Try to teach them to

> take it one day

> at a time and keep their lives as normal as

> possible. Again, set it

> up so that they can ask you or Mike for information.

> Check in with

> them periodically. I hope that Mike can find

> activities to continue

> to be involved with the boys. Good luck to you

> both.

>

>

> >

> > Hi all,

> > My husband(46)was diagnosed with IPF in

> January of this

> year.

> > I've been reading all of your posts for about a

> month now, and

> you've

> > already helped me so much without even knowing it.

> Because of

> this

> > site I knew just what questions to ask the

> pulmonologist when I

> went

> > with my husband in February. It sure does pay to

> be informed,

> > because I realized right away how little that

> particular doctor

> knew

> > about this disease and how UNhelpful she would be!

> Long story

> short,

> > my husband (Mike) now has a FANTASTIC doctor whom

> I met

> yesterday. I

> > do have two questions at the moment I was hoping

> some of you might

> be

> > able to help me with.

> > The first one is about oxygen. Mike's PFT on

> Monday showed

> that

> > he is ready for O2 at this point (I think 3L

> during sleep and

> > activity). The company we will be using is Apria

> (he already has

> a

> > BiPap maching through them). I'm confused by all

> the different

> types

> > I've seen several of you mention: Inogen,

> Marathon, Helios, etc.

> Are

> > these simply different brand names of the same

> basic machine?

> Also,

> > what are some other basic things I should be aware

> of in case they

> > give us any choices?

> > My second question is for those of you who

> still have fairly

> > young children at home. Our two boys are 12 and

> 8, and we are

> still

> > trying to figure out how much information to share

> and how soon.

> > They already know their dad doesn't just have a

> temporary problem

> > like a cold and that his " lungs don't work as well

> as they used

> to " .

> > Of course as soon as Mike is set up with the

> oxygen they'll have

> to

> > adjust to that as well. I just feel like we're

> not giving the

> 12yo

> > enough information. He hasn't been asking

> questions, but I don't

> > want him to start trying to 'fill in the blanks'

> for himself

> either.

> > I also don't see any point in scaring them

> prematurely. Yes, this

> is

> > a terminal illness, but it's so unpredictable that

> could still be

> 10

> > or 20 years down the road. Any advice here?

> > I really value all of your opinions so much!!

> I used to hate

> > the internet, but now I must admit at times it can

> be a wonderful

> > thing. Sorry to be so long winded, no pun

> intended ;-) I promise

> > future posts will be shorter.

> > Chris

> >

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Chris:

You have all the right in the world to talk. You and your entire family are living through this not just your husband. I sometimes feel that my disease is far more difficult for my wife to deal with than it is for me. Please know that reading your postings helps us all, for we can't forget what this is doing to our families.

Gordon

Re: Re: Hi: New here

Oh Bonnie, You don't know how much your response meant tome...I think Mike and I have somewhat been in denialabout the whole thing up until more recently. I criedwhen I read your e-mail, it made it all so REAL...I'vebeen surprised that the boys are NOT asking questions,which is why I asked others for advice. I think theirlack of questions has probably been their own form ofdenial ("what I don't know can't hurt me"). Myhusband can't discuss the subject in concrete termswithout getting 'choked up' to the point of not beingable to talk, which is why I guess it's sort of up tome to provide the heart-to-heart talks with the boys. It's just so HARD, but I do feel us becoming astronger family because of it. It's funny how many ofus just sort of skate along through life, not reallylooking for any real meaning in anything and taking somuch for granted. Before all of this happened ifsomeone had asked me if I had a good marriage I wouldhave just thought, "yeah, it's okay". We've beenmarried for 15 years this April (I know some of youare thinking "only a measly little 15 years, that'snothing!") and when I look back at some of the stupidarguments we had over piddly little crap I realize howtrue the saying 'don't sweat the small stuff' is! Iknow I'm rambling....sorry...I guess I'm just in avery philosophical mood about the whole thing today. Does anyone else here feel themselves going throughstages (shock, panic, anger, denial, defeat, resolve,peace, acceptance, etc.). I could probably name adozen more...sometimes I think I'm feeling them all atonce. I know I'm not the one physically experiencingthe disease... I apologize if any of you are thinking"what right does SHE have to talk."... anyway, I guessI better get off my soap box now...I'm just sothankful for this group...I wish my husband wouldjoin, I'm afraid he keeps too much bottled up insidewhich doesn't help his condition at all...I think I'llgo have a good cry now while the kids are outsideplaying...thanks for listening... --- Bonnie Faulkner wrote:> Welcome aboard ! My name is Bonnie, I'm a social> worker and have > spent most of my life working with children, just> felt like I had to > respond to your delimma. Your fear that the> children will "fill in > the blanks" if you don't give them info is a real> one. They'll get > info from someone, their friends, the internet, and> the info they > get may not be right. You will not be able to> relieve them of all > the fear. You're right, this is a terminal illness,> but, like any > other illness, we don't know when terminal will be. > The other side > of the coin, is that you don't want to tell them> more than they want > to know. The 12 y/o & the 8 y/o will probably need> different amts & > depth of info. Give them a short, basic rundown of> the disease, > don't use the word terminal, but do tell them that> it is a disease > Mike & all of you will have to live with forever;> that the O2 > machines will be make Dad feel better but that> dragging it around > will limit or change how you do the activities that> you do as a > family. Ask them what they want to know. Set it up> so that, as > questions occur to them, they feel free to get the> information for > you or Mike. This is a reality that you cannot> protect them from. > If your spouse is like me, he either has been or> will get to the > place that he catches every respiratory virus or> bacteria that's > going around and every sinus infection may become> bronchitis or > pneumonia. Children are intuitive; they know when> we're keeping > secrets from them and they generally resent it. > They are your > family, thus they'll cope better if they're> included. When one of > them asks you if Daddy's going to die, tell the> truth - yes, but > none of us knows how or when. Try to teach them to> take it one day > at a time and keep their lives as normal as> possible. Again, set it > up so that they can ask you or Mike for information.> Check in with > them periodically. I hope that Mike can find> activities to continue > to be involved with the boys. Good luck to you> both.> > > >> > Hi all,> > My husband(46)was diagnosed with IPF in> January of this > year. > > I've been reading all of your posts for about a> month now, and > you've > > already helped me so much without even knowing it.> Because of > this > > site I knew just what questions to ask the> pulmonologist when I > went > > with my husband in February. It sure does pay to> be informed, > > because I realized right away how little that> particular doctor > knew > > about this disease and how UNhelpful she would be!> Long story > short, > > my husband (Mike) now has a FANTASTIC doctor whom> I met > yesterday. I > > do have two questions at the moment I was hoping> some of you might > be > > able to help me with. > > The first one is about oxygen. Mike's PFT on> Monday showed > that > > he is ready for O2 at this point (I think 3L> during sleep and > > activity). The company we will be using is Apria> (he already has > a > > BiPap maching through them). I'm confused by all> the different > types > > I've seen several of you mention: Inogen,> Marathon, Helios, etc. > Are > > these simply different brand names of the same> basic machine? > Also, > > what are some other basic things I should be aware> of in case they > > give us any choices?> > My second question is for those of you who> still have fairly > > young children at home. Our two boys are 12 and> 8, and we are > still > > trying to figure out how much information to share> and how soon. > > They already know their dad doesn't just have a> temporary problem > > like a cold and that his "lungs don't work as well> as they used > to". > > Of course as soon as Mike is set up with the> oxygen they'll have > to > > adjust to that as well. I just feel like we're> not giving the > 12yo > > enough information. He hasn't been asking> questions, but I don't > > want him to start trying to 'fill in the blanks'> for himself > either. > > I also don't see any point in scaring them> prematurely. Yes, this > is > > a terminal illness, but it's so unpredictable that> could still be > 10 > > or 20 years down the road. Any advice here?> > I really value all of your opinions so much!!> I used to hate > > the internet, but now I must admit at times it can> be a wonderful > > thing. Sorry to be so long winded, no pun> intended ;-) I promise > > future posts will be shorter.> > Chris> >> > > > > > __________________________________________________

[Guest guest]

Chris-----You and your family are going to need time to adjust to the bad news. All the advice you get is not going to change things. After a while I sort of went numb and started planning how I could set things up to make it easier for my wife and children. I know it's different in your situation. My heart goes out to you and your family. May god's love find a way to give you strength and courage. Keep writing and keep us posted. Your husband may have another 20 years. Who knows. GREY

Re: Re: Hi: New here

Oh Bonnie, You don't know how much your response meant tome...I think Mike and I have somewhat been in denialabout the whole thing up until more recently. I criedwhen I read your e-mail, it made it all so REAL...I'vebeen surprised that the boys are NOT asking questions,which is why I asked others for advice. I think theirlack of questions has probably been their own form ofdenial ("what I don't know can't hurt me"). Myhusband can't discuss the subject in concrete termswithout getting 'choked up' to the point of not beingable to talk, which is why I guess it's sort of up tome to provide the heart-to-heart talks with the boys. It's just so HARD, but I do feel us becoming astronger family because of it. It's funny how many ofus just sort of skate along through life, not reallylooking for any real meaning in anything and taking somuch for granted. Before all of this happened ifsomeone had asked me if I had a good marriage I wouldhave just thought, "yeah, it's okay". We've beenmarried for 15 years this April (I know some of youare thinking "only a measly little 15 years, that'snothing!") and when I look back at some of the stupidarguments we had over piddly little crap I realize howtrue the saying 'don't sweat the small stuff' is! Iknow I'm rambling....sorry...I guess I'm just in avery philosophical mood about the whole thing today. Does anyone else here feel themselves going throughstages (shock, panic, anger, denial, defeat, resolve,peace, acceptance, etc.). I could probably name adozen more...sometimes I think I'm feeling them all atonce. I know I'm not the one physically experiencingthe disease... I apologize if any of you are thinking"what right does SHE have to talk."... anyway, I guessI better get off my soap box now...I'm just sothankful for this group...I wish my husband wouldjoin, I'm afraid he keeps too much bottled up insidewhich doesn't help his condition at all...I think I'llgo have a good cry now while the kids are outsideplaying...thanks for listening... --- Bonnie Faulkner wrote:> Welcome aboard ! My name is Bonnie, I'm a social> worker and have > spent most of my life working with children, just> felt like I had to > respond to your delimma. Your fear that the> children will "fill in > the blanks" if you don't give them info is a real> one. They'll get > info from someone, their friends, the internet, and> the info they > get may not be right. You will not be able to> relieve them of all > the fear. You're right, this is a terminal illness,> but, like any > other illness, we don't know when terminal will be. > The other side > of the coin, is that you don't want to tell them> more than they want > to know. The 12 y/o & the 8 y/o will probably need> different amts & > depth of info. Give them a short, basic rundown of> the disease, > don't use the word terminal, but do tell them that> it is a disease > Mike & all of you will have to live with forever;> that the O2 > machines will be make Dad feel better but that> dragging it around > will limit or change how you do the activities that> you do as a > family. Ask them what they want to know. Set it up> so that, as > questions occur to them, they feel free to get the> information for > you or Mike. This is a reality that you cannot> protect them from. > If your spouse is like me, he either has been or> will get to the > place that he catches every respiratory virus or> bacteria that's > going around and every sinus infection may become> bronchitis or > pneumonia. Children are intuitive; they know when> we're keeping > secrets from them and they generally resent it. > They are your > family, thus they'll cope better if they're> included. When one of > them asks you if Daddy's going to die, tell the> truth - yes, but > none of us knows how or when. Try to teach them to> take it one day > at a time and keep their lives as normal as> possible. Again, set it > up so that they can ask you or Mike for information.> Check in with > them periodically. I hope that Mike can find> activities to continue > to be involved with the boys. Good luck to you> both.> > > >> > Hi all,> > My husband(46)was diagnosed with IPF in> January of this > year. > > I've been reading all of your posts for about a> month now, and > you've > > already helped me so much without even knowing it.> Because of > this > > site I knew just what questions to ask the> pulmonologist when I > went > > with my husband in February. It sure does pay to> be informed, > > because I realized right away how little that> particular doctor > knew > > about this disease and how UNhelpful she would be!> Long story > short, > > my husband (Mike) now has a FANTASTIC doctor whom> I met > yesterday. I > > do have two questions at the moment I was hoping> some of you might > be > > able to help me with. > > The first one is about oxygen. Mike's PFT on> Monday showed > that > > he is ready for O2 at this point (I think 3L> during sleep and > > activity). The company we will be using is Apria> (he already has > a > > BiPap maching through them). I'm confused by all> the different > types > > I've seen several of you mention: Inogen,> Marathon, Helios, etc. > Are > > these simply different brand names of the same> basic machine? > Also, > > what are some other basic things I should be aware> of in case they > > give us any choices?> > My second question is for those of you who> still have fairly > > young children at home. Our two boys are 12 and> 8, and we are > still > > trying to figure out how much information to share> and how soon. > > They already know their dad doesn't just have a> temporary problem > > like a cold and that his "lungs don't work as well> as they used > to". > > Of course as soon as Mike is set up with the> oxygen they'll have > to > > adjust to that as well. I just feel like we're> not giving the > 12yo > > enough information. He hasn't been asking> questions, but I don't > > want him to start trying to 'fill in the blanks'> for himself > either. > > I also don't see any point in scaring them> prematurely. Yes, this > is > > a terminal illness, but it's so unpredictable that> could still be > 10 > > or 20 years down the road. Any advice here?> > I really value all of your opinions so much!!> I used to hate > > the internet, but now I must admit at times it can> be a wonderful > > thing. Sorry to be so long winded, no pun> intended ;-) I promise > > future posts will be shorter.> > Chris> >> > > > > > __________________________________________________