Re: looking for information & friends

[Guest guest]

Hi Jack, I hope I am doing this right. i am only on one other group

and it is nothing like this one.

my dh has COPD and the Dr gave up on him about 15 yrs ago. Thankful

GOD has not given up on him.I can't tell that he is any different now

than he was then.

I have had Pf for years and now I know it is getting a lot worse.

just sense Jan of this year I have changed my o2 from 2 to 3 and I

still have a hard time breathing if I am doing any thing.

I appreciate you reply,

gagrandma

-- In Breathe-Support , Jack Marshall

wrote:

>

> You're welcome, Grandma.  There's plenty of us here who also are

grands.  This is a good place to learn about fibrosis and associated

diseases.  It' been my school for a few months now.  I'm about to

finish grade school, and look forward to moving on to high school.  I

am very ambitious and hope to get my PHD some day.

> Jack

> 79/UIP - IPF/06/005 Maine

>

>

> looking for information & friends

>

>

> hi Everyone,just wanted to drop in and say hello.I have read some

of

> your post and found them very interesting. Hope you didn't mind.

> I was introduced to PF years ago. I am on oxygen.

> I can tell my breathing is getting a lot worse.

> My dh has had COPD for years, and i have been takeing care of him.

> So if i get really bad then we will be in bad shape.

> This computer is the only friend I have to the out side world.I'm

not

> really good on it but i do like to visit and learn what I can.

> Thanks for shareing with me,

>

[Guest guest]

Hi grandma... I am a grandma too, as many of us here are grandparents.

Do you have a pulmonologist that monitors you and the O2 you use?

I don't know what dh means...must be your husband?

Welcome to our board although it is sad to welcome a newbie I know you are in a good place here. There is always someone to answer your questions.

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

looking for information & friends> > > hi Everyone,just wanted to drop in and say hello.I have read some of > your post and found them very interesting. Hope you didn't mind.> I was introduced to PF years ago. I am on oxygen.> I can tell my breathing is getting a lot worse. > My dh has had COPD for years, and i have been takeing care of him. > So if i get really bad then we will be in bad shape.> This computer is the only friend I have to the out side world.I'm not > really good on it but i do like to visit and learn what I can.> Thanks for shareing with me,>

[Guest guest]

thanks Mama Sher,dh does mean dear hubby.

I do have a pulminalogist but he is about 35 miles away and I did

not feel that I could drive that far so I did not go for almost a

year. my hubby's son carried me there 2weeks ago.I will go back the

last of the month for all the test.Except he orded the Rehab for

me ,but we don't have a place here that does that. so I will not be

able to do this.I was seeing a my medical Dr that is here in town. He

ordered a Ct and the bood gases. All he could tell me was the disease

is getting worse. I am the one that turned the 02 up, but I still am

so short winded I am just worn out when I have to do any thing.

thank you for your reply

> >

> > You're welcome, Grandma. There's plenty of us here who also

are

> grands. This is a good place to learn about fibrosis and

associated

> diseases. It' been my school for a few months now. I'm about to

> finish grade school, and look forward to moving on to high

school. I

> am very ambitious and hope to get my PHD some day.

> > Jack

> > 79/UIP - IPF/06/005 Maine

> >

> >

> > looking for information & friends

> >

> >

> > hi Everyone,just wanted to drop in and say hello.I have read

some

> of

> > your post and found them very interesting. Hope you didn't mind.

> > I was introduced to PF years ago. I am on oxygen.

> > I can tell my breathing is getting a lot worse.

> > My dh has had COPD for years, and i have been takeing care of

him.

> > So if i get really bad then we will be in bad shape.

> > This computer is the only friend I have to the out side

world.I'm

> not

> > really good on it but i do like to visit and learn what I can.

> > Thanks for shareing with me,

> >

>

[Guest guest]

good morning Sher, my name is Ruth Pierce.i am almost 71.

i live in a small town called Kingsland Ga.

I have went to this medical Dr for many years. He has never montered

my oxygen.Even tho he knowes I have been unable to visit the

pulminalogist.I think it is time for a change.

The heart Dr put me on Diltiazem to slow my heart rate down.This

Medical Dr advised me to take it even tho I was telling both of them

that my breathing was not as good after takeing it.Then i started

gaining weight which they said it was not the meds.

When i went back to the lung Dr he took me off of them.

thanks for you reply

Ruth

> > >

> > > You're welcome, Grandma. There's plenty of us here who also

> are

> > grands. This is a good place to learn about fibrosis and

> associated

> > diseases. It' been my school for a few months now. I'm about to

> > finish grade school, and look forward to moving on to high

> school. I

> > am very ambitious and hope to get my PHD some day.

> > > Jack

> > > 79/UIP - IPF/06/005 Maine

> > >

> > >

> > > looking for information & friends

> > >

> > >

> > > hi Everyone,just wanted to drop in and say hello.I have read

> some

> > of

> > > your post and found them very interesting. Hope you didn't

mind.

> > > I was introduced to PF years ago. I am on oxygen.

> > > I can tell my breathing is getting a lot worse.

> > > My dh has had COPD for years, and i have been takeing care of

> him.

> > > So if i get really bad then we will be in bad shape.

> > > This computer is the only friend I have to the out side

> world.I'm

> > not

> > > really good on it but i do like to visit and learn what I can.

> > > Thanks for shareing with me,

> > >

> >

>

[Guest guest]

Mama Sher, in your posts with Grandma Ruth, try to find out what kind of help she needs that I and maybe others could provide. Most of you have invaluable medical advice and I have none. But if she lacks some of the basic needs for dealing with fibrosis, perhaps I can help there. I ask this of you because she seems more comfortable talking you, sort of grandma to grandma. Grandpas, well, even little kids know that you can hit him up for money and he loves it.

Jack

looking for information & friends> > > > > > > > > hi Everyone,just wanted to drop in and say hello.I have read > some > > of > > > your post and found them very interesting. Hope you didn't mind.> > > I was introduced to PF years ago. I am on oxygen.> > > I can tell my breathing is getting a lot worse. > > > My dh has had COPD for years, and i have been takeing care of > him. > > > So if i get really bad then we will be in bad shape.> > > This computer is the only friend I have to the out side > world.I'm > > not > > > really good on it but i do like to visit and learn what I

can.> > > Thanks for shareing with me,> > >> >>

[Guest guest]

Thank you, Ruth. If you need any other help, you let me know and I'll do what I can. However, I have reneged on the Rolls Royces, although I truly believe that every fibrosis patient deserves one. Even me.

I'll be looking under the Christmas tree for sure.

Jack

looking for information & friends> > > > > > hi Everyone,just wanted to drop in and say hello..I have read some > of > > your post and found them very interesting. Hope you didn't mind.> > I was introduced to PF years ago. I am on oxygen.> > I can tell my breathing is getting a lot worse. > > My dh has

had COPD for years, and i have been takeing care of him. > > So if i get really bad then we will be in bad shape.> > This computer is the only friend I have to the out side world.I'm > not > > really good on it but i do like to visit and learn what I can.> > Thanks for shareing with me,> >>

[Guest guest]

Hi Ruth... we are near the same age. I'll be 70 in August, or did I already tell you?

I hope you find a good Dr who can monitor all your needs, all the time. Sounds like you have heart trouble as well as your lungs. That has to be really tiring!

I'm off to meet some of our members in Olympia, WA. tomorrow. I'm really anxious to see them face to face.

Take good care of you and dh. How is he doing by the way?

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

looking for information & friends> > > > > > > > > hi Everyone,just wanted to drop in and say hello.I have read > some > > of > > > your post and found them very interesting. Hope you didn't mind.> > > I was introduced to PF years ago. I am on oxygen.> > > I can tell my breathing is getting a lot worse. > > > My dh has had COPD for years, and i have been takeing care of > him. > > > So if i get really bad then we will be in bad shape.> > > This computer is the only friend I have to the out side > world.I'm > > not > > > really good on it but i do like to visit and learn what I can.> > > Thanks for shareing with me,> > >> >>

[Guest guest]

Jack... what a special man you are to want to share some of what you have with others. It "feels good" to share and it's nice when we can have an outlet.

I haven't spoken with G/Ruth privately. Her posts are here on the board. However, if I get an inkling, I'll let you know.

MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there!

looking for information & friends> > > > > > > > > hi Everyone,just wanted to drop in and say hello.I have read > some > > of > > > your post and found them very interesting. Hope you didn't mind.> > > I was introduced to PF years ago. I am on oxygen.> > > I can tell my breathing is getting a lot worse. > > > My dh has had COPD for years, and i have been takeing care of > him. > > > So if i get really bad then we will be in bad shape.> > > This computer is the only friend I have to the out side > world.I'm > > not > > > really good on it but i do like to visit and learn what I can.> > > Thanks for shareing with me,> > >> >>

[Guest guest]

Hi Sher, That sound like a great time, being able to meet with some

of the group. I'm sure you will enjoy it. How long will you be gone?

My birthday is Aug 17th what date is yours?

i do have heart problems also. Hubby is having a good day today.

you be careful and enjoy your trip.

Ruth

> > > >

> > > > You're welcome, Grandma. There's plenty of us here who also

> > are

> > > grands. This is a good place to learn about fibrosis and

> > associated

> > > diseases. It' been my school for a few months now. I'm about

to

> > > finish grade school, and look forward to moving on to high

> > school. I

> > > am very ambitious and hope to get my PHD some day.

> > > > Jack

> > > > 79/UIP - IPF/06/005 Maine

> > > >

> > > >

> > > > looking for information & friends

> > > >

> > > >

> > > > hi Everyone,just wanted to drop in and say hello.I have

read

> > some

> > > of

> > > > your post and found them very interesting. Hope you didn't

> mind.

> > > > I was introduced to PF years ago. I am on oxygen.

> > > > I can tell my breathing is getting a lot worse.

> > > > My dh has had COPD for years, and i have been takeing care

of

> > him.

> > > > So if i get really bad then we will be in bad shape.

> > > > This computer is the only friend I have to the out side

> > world.I'm

> > > not

> > > > really good on it but i do like to visit and learn what I

can.

> > > > Thanks for shareing with me,

> > > >

> > >

> >

>

[Guest guest]

Thank you jack, I hope you will not have to wait until Christmas to

get that Rolls Royces. Sounds like you should have it by thanksgiving

any way.i saw the note you wrote Sher, well I am sorry, I am a little

shy.

i have a question for you or someone else that might read this.does

most people have to use the cpap mask for sleeping.My dh has one but

the pulminalogist said i do not need one.

I had a sleep study done before I started useing o2 and The man came

in and wake me up to see if i was still breathing and the Dr said I

had to start useing the o2 while sleeping.not sure how low it went.

Ok, but he said I do not need the mask.

thanks, ruth

> > >

> > > You're welcome, Grandma.  There's plenty of us here who also

are

> > grands.  This is a good place to learn about fibrosis and

> associated

> > diseases.  It' been my school for a few months now.  I'm about to

> > finish grade school, and look forward to moving on to high

school. 

> I

> > am very ambitious and hope to get my PHD some day.

> > > Jack

> > > 79/UIP - IPF/06/005 Maine

> > >

> > >

> > > looking for information & friends

> > >

> > >

> > > hi Everyone,just wanted to drop in and say hello..I have read

> some

> > of

> > > your post and found them very interesting. Hope you didn't mind.

> > > I was introduced to PF years ago. I am on oxygen.

> > > I can tell my breathing is getting a lot worse.

> > > My dh has had COPD for years, and i have been takeing care of

> him.

> > > So if i get really bad then we will be in bad shape.

> > > This computer is the only friend I have to the out side

world.I'm

> > not

> > > really good on it but i do like to visit and learn what I can.

> > > Thanks for shareing with me,

> > >

> >

>

[Guest guest]

Hi Ruth,

Welcome to the group! My name is Irene. I'm 35. I have PF. I was diagnosed last year in

March/07 when I was rushed to ER

My PF was caused by a medication called Methotrexate in order to reduce inflammation

of my Crohn's.

I'm waiting for an appointment for the Sleep study. My lung dr thinks I might have

Sleep Apnea, I'm not sure what they're going to do...once they get the results. If I would

be wearing a CPAP or not...I hope they are other treatments than wearing the CPAP....I

would have some difficulties wearing something on my head....even though I know it's for

my own good.

IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

looking for information & friends> > > > > > > > > hi Everyone,just wanted to drop in and say hello..I have read > some > > of > > > your post and found them very interesting. Hope you didn't mind.> > > I was introduced to PF years ago. I am on oxygen.> > > I can tell my breathing is getting a lot worse. > > > My dh has had

COPD for years, and i have been takeing care of > him. > > > So if i get really bad then we will be in bad shape.> > > This computer is the only friend I have to the out side world.I'm > > not > > > really good on it but i do like to visit and learn what I can.> > > Thanks for shareing with me,> > >> >>

Ask a question on any topic and get answers from real people. Go to Yahoo! Answers.

[Guest guest]

Hi Ruth,

Just wanted to add my welcome to the board. My name is Beth, I'm 48 and was diagnosed with a form of pulmonary fibrosis just about exactly 2 years ago.

I do not use a c-pap. I've not had a sleep study but don't have difficulty sleeping and seem to sleep peacefully and wake up refreshed. Most folks who use a c-pap do so based on the diagnosis of something such as sleep apnea where you stop breathing many times during your sleep at night. The c-pap continually forces oxygen into your lungs so that the sleep apnea does not do damage to your body from the lack of oxygen.

If you've had a sleep study and they told you to use your oxygen but you don't need the full c-pap mask then it's reasonable to assume you don't have sleep apnea but rather general low oxygen while you're sleeping. That's the case with me also. Just using the regular oxygen solves it for me.

Again, welcome. Don't worry about being shy. This is a very friendly group!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

looking for information & friends> > > > > > > > > hi Everyone,just wanted to drop in and say hello..I have read > some > > of > > > your post and found them very interesting. Hope you didn't mind.> > > I was introduced to PF years ago. I am on oxygen.> > > I can tell my breathing is getting a lot worse. > > > My dh has had

COPD for years, and i have been takeing care of > him. > > > So if i get really bad then we will be in bad shape.> > > This computer is the only friend I have to the out side world.I'm > > not > > > really good on it but i do like to visit and learn what I can.> > > Thanks for shareing with me,> > >> >>

[Guest guest]

Hi Ruth, I am Peggy, I am 65 going on 34. Still feel like I can do anything and I do in my mind. I was Diagnosed in 2004 with IPF. 4 years this month. I have been well since, I am using oxygen 24/7 and have been for probably 3 1/2 with this tube up my nose.. Welcome to our group. You'll find a lot of love an help here. Ask anything you would like and you'll get an answer from someone pretty quickly.I live in Silver Springs, Fl. it's about two hours from the Fl./Ga. line. How far are you from the line?God Bless. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."

[Guest guest]

hi Irene, Thanks for the welcome. you sound so young to have this

problem ,but i suppose I all ready had it back then also maybe I

didn't know it at that time. I have always been short winded even as

a child,I think they were saying it was my heart problem. Now the

Dr'd want to pass the buck over from the lungs to the heart so I

suppose it really doesn't matter which one gets me first.

Sorry,I don't know any thing about crohn's disease.i do think we have

a lot more problems from the side affects of medication than the good

thay do us.

thank you for replying

ruth

> > > >

> > > > You're welcome, Grandma.  There's plenty of us here who also

> are

> > > grands.  This is a good place to learn about fibrosis and

> > associated

> > > diseases.  It' been my school for a few months now.  I'm about

to

> > > finish grade school, and look forward to moving on to high

> school. 

> > I

> > > am very ambitious and hope to get my PHD some day.

> > > > Jack

> > > > 79/UIP - IPF/06/005 Maine

> > > >

> > > >

> > > > looking for information & friends

> > > >

> > > >

> > > > hi Everyone,just wanted to drop in and say hello..I have read

> > some

> > > of

> > > > your post and found them very interesting. Hope you didn't

mind.

> > > > I was introduced to PF years ago. I am on oxygen.

> > > > I can tell my breathing is getting a lot worse.

> > > > My dh has had COPD for years, and i have been takeing care of

> > him.

> > > > So if i get really bad then we will be in bad shape.

> > > > This computer is the only friend I have to the out side

> world.I'm

> > > not

> > > > really good on it but i do like to visit and learn what I can.

> > > > Thanks for shareing with me,

> > > >

> > >

> >

>

>

>

>

>

__________________________________________________________________

> Ask a question on any topic and get answers from real people. Go to

Yahoo! Answers and share what you know at http://ca.answers.yahoo.com

>

[Guest guest]

thanks for the welcome Beth,

this does seem like a friendly board.

thanks for the answer to the question,sounds like you understand a

lot about this disease. sorry you have to be here but very nice

talking with you.

Ruth

> > > >

> > > > You're welcome, Grandma.  There's plenty of us here who also

> are

> > > grands.  This is a good place to learn about fibrosis and

> > associated

> > > diseases.  It' been my school for a few months now.  I'm about

to

> > > finish grade school, and look forward to moving on to high

> school. 

> > I

> > > am very ambitious and hope to get my PHD some day.

> > > > Jack

> > > > 79/UIP - IPF/06/005 Maine

> > > >

> > > >

> > > > looking for information & friends

> > > >

> > > >

> > > > hi Everyone,just wanted to drop in and say hello..I have read

> > some

> > > of

> > > > your post and found them very interesting. Hope you didn't

mind.

> > > > I was introduced to PF years ago. I am on oxygen.

> > > > I can tell my breathing is getting a lot worse.

> > > > My dh has had COPD for years, and i have been takeing care of

> > him.

> > > > So if i get really bad then we will be in bad shape.

> > > > This computer is the only friend I have to the out side

> world.I'm

> > > not

> > > > really good on it but i do like to visit and learn what I can.

> > > > Thanks for shareing with me,

> > > >

> > >

> >

>

[Guest guest]

Hi Peggy,

great to hear from you. I have never been to Silver Springes. I

understand it is a nice place.

we are about 3 miles from the line. Right next to 95. I never go

into Fla. If i can't get what I need here I go into Brunswick Ga.

About 45 mins to Brunswick going North.and about 45 min to

ville going south.

Ruth

>

> Hi Ruth, I am Peggy, I am 65 going on 34. Still feel like I can do

> anything and I do in my mind. I was Diagnosed in 2004 with IPF. 4

> years this month. I have been well since, I am using oxygen 24/7

and

> have been for probably 3 1/2 with this tube up my nose..

>

> Welcome to our group. You'll find a lot of love an help here. Ask

> anything you would like and you'll get an answer from someone

pretty

> quickly.

> I live in Silver Springs, Fl. it's about two hours from the

Fl./Ga.

> line. How far are you from the line?

>

> God Bless.

>

>

> Love and Prayers, Peggy

> IPF 2004, Florida

>

> " Worry looks around,

> Sorry looks back,

> Faith looks up. "

>

[Guest guest]

Hi jack,

That's ok if you could not answer that question there will be many

more. Someone did answer for me.

Have you tryed the scooter store?

Ruth

> > > >

> > > > You're welcome, Grandma.  There's plenty of us here who also

> are

> > > grands.  This is a good place to learn about fibrosis and

> > associated

> > > diseases.  It' been my school for a few months now.  I'm about

to

> > > finish grade school, and look forward to moving on to high

> school. 

> > I

> > > am very ambitious and hope to get my PHD some day.

> > > > Jack

> > > > 79/UIP - IPF/06/005 Maine

> > > >

> > > >

> > > > looking for information & friends

> > > >

> > > >

> > > > hi Everyone,just wanted to drop in and say hello..I have read

> > some

> > > of

> > > > your post and found them very interesting. Hope you didn't

mind.

> > > > I was introduced to PF years ago. I am on oxygen.

> > > > I can tell my breathing is getting a lot worse.

> > > > My dh has had COPD for years, and i have been takeing care of

> > him.

> > > > So if i get really bad then we will be in bad shape.

> > > > This computer is the only friend I have to the out side

> world.I'm

> > > not

> > > > really good on it but i do like to visit and learn what I can.

> > > > Thanks for shareing with me,

> > > >

> > >

> >

>

[Guest guest]

Hi jack,

That's ok if you could not answer that question there will be many

more. Someone did answer for me.

Have you tryed the scooter store?

Ruth

> > > >

> > > > You're welcome, Grandma.  There's plenty of us here who also

> are

> > > grands.  This is a good place to learn about fibrosis and

> > associated

> > > diseases.  It' been my school for a few months now.  I'm about

to

> > > finish grade school, and look forward to moving on to high

> school. 

> > I

> > > am very ambitious and hope to get my PHD some day.

> > > > Jack

> > > > 79/UIP - IPF/06/005 Maine

> > > >

> > > >

> > > > looking for information & friends

> > > >

> > > >

> > > > hi Everyone,just wanted to drop in and say hello..I have read

> > some

> > > of

> > > > your post and found them very interesting. Hope you didn't

mind.

> > > > I was introduced to PF years ago. I am on oxygen.

> > > > I can tell my breathing is getting a lot worse.

> > > > My dh has had COPD for years, and i have been takeing care of

> > him.

> > > > So if i get really bad then we will be in bad shape.

> > > > This computer is the only friend I have to the out side

> world.I'm

> > > not

> > > > really good on it but i do like to visit and learn what I can.

> > > > Thanks for shareing with me,

> > > >

> > >

> >

>