I'm New

[Guest guest]

Pat,

I am sorry that you had that experience in the car I can't imagine. I am a newbie as they call us I was just diagnosed about three weeks ago and as of right now I have no symptoms with the exception of some SOB when I work out which is about 4-5 times a week so I can't say I know how you feel just yet. However I was diagnosed with UIP so I am certain that sooner vs. later I will be on oxygen at least with activity. I also find a lot of support with my air family and enjoy having a place where I can go and the people understand my fears. I am very young to have this disease and I also have 4 children which makes me even more scared of this diagnosis. I wish you all the best and I am thankful that you are here with us. God Bless Tammy Tammy 35y.o. Omaha, NE UIP 11/09

To: Breathe-Support Sent: Wed, December 9, 2009 10:55:43 AMSubject: I'm New

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or

heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat

[Guest guest]

hi pat

welcome

sorry you need us

glad you found us

if you use your oxygen and turn the liters per minute up so that your SAT is above 90%, you can probably drive

unless something else caused the blackout

i hope you were evaluated for it

you need to let your husband know about the dangers of using the fireplace with oxygen

you should be a ble to find information on line that you can show him

you should be able to enlist the help of your oxygen supplier to explain the situation to him

good luck

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: I'm NewTo: Breathe-Support Date: Wednesday, December 9, 2009, 12:55 PM

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer

or heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat

[Guest guest]

Pat

The response to you is simple-USE YOUR OXYGEN. Sorry to have yelled it

but please. You should never allow your saturation to drop to those

levels. It's bad for you in so many ways. Your needs may have increased.

Use your oximeter, talk to your doctor, maintain your saturation above

90%. Until you embrace oxygen as your friend, you'll really struggle. I

get out and drive and do everything. Why? Because I have oxygen.

As to the fireplace, I cannot be around most and haven't been able to

for years because of allergies. Now its complicated by oxygen. So, we

don't use ours. But, the key point of what you said is that it bothers

you. You know it bothers you. Therefore, you shouldn't be around it and

others should be aware enough to not use it to your detriment. We all

need to set boundaries to protect ourselves. Avoiding smokers and

avoiding anything that makes us worse is important. Avoiding germs and

sick people is huge. I can't be around fragrances of any sort to a

significant level. So, cleaning products are based on that.

Start looking out for yourself. First maintain your saturation. Second,

say no to those things that you know adversely affect you. You're saying

you'd rather have cancer or heart disease is a reflection of you not

learning yet how best to live with this disease. I can assure you Brett,

who was a member here, would have much rather just had PF than the

cancer found when he had his biopsy. He was the reminder if i had ever

needed it. I would have given anything if they could have just said he

had PF and nothing else.

Life is livable and can be good with PF. You don't overcome it with

force. You learn to live with it and within its limitations. I can get

in my van and go where I want and do what I want. Now, exceptions. I

would love to go to New Orleans and Branson but the amount of smoking is

an issue in both. I can't take that well. So, I have to decide is there

a way to go and minimize or do I just go somewhere else.

>

> Hi Everyone,

>

> I'm new to this site. I was diagnosed with IPF 4 years ago. I've

been on oxygen at night for a year, and with exertion during the day. I

now have to use it when I go out and about. One morning I was going to

run an errand about 10 minutes form my house. I didn't feel too well,

but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit

a big decorative bolder. I must have blacked out, because I don't

remember what happened. That was two months ago and I've been afraid to

drive since. Now I feel trapped, because I can't go out whenever I

want, and have to depend on someone else to take me. Sometimes my

oxygen level drops to 78-79 If I don't have it on. I cough a lot also.

>

> I would like to know if any of you have a problem with a fireplace.

My husband likes to burn our fireplace, but it really bothers me.

Anyone that doesn't have a problem breathing just doesn't understand

this disease. I would rather have cancer or heart disease.

>

> I've rambled.....hope I made sense. Anxious to hear from anyone.

It's so nice to be in contact with other people that understand.

>

> Pat

>

[Guest guest]

Pat,

Welcome to the group. This a very caring group of people and I (a newbie too) have learned so much. As for the fireplace..... I really don't know the clinical reason it would bother you, but by all means if it does then it is probably not good for you. I avoid smokers, cologne and strong cleaning supplies as I have trouble with all of those.

Patti, 59, Indianapolis, IPF 2007

[Guest guest]

Barbara

You are correct and the problem with fireplaces is that sparks will jump

out into the room. The issue is not just the spark contacting your

oxygen. You may have a favorite chair or sofa and using oxygen on it get

it highly oxygenated. So, a spark that might normally cause no problem

could hit it and cause a fire.

I didn't emphasize this in my response because she had indicated the

fire bothering her breathing wise and I think that is an issue for her

even if she wasn't using the oxygen.

>

> Oxygen use near an open flame is dangerous, I have been told.

> Â

> Barbara McD

> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> Beautiful Western NC

> Â Â

> Attitude is everything.

> Â

>

>

>

>

> ________________________________

> From: Patti napa73@...

> To: Breathe-Support

> Sent: Wed, December 9, 2009 2:09:46 PM

> Subject: I'm New

>

> Â

> Pat,

> Welcome to the group. This a very caring group of people and

I (a newbie too) have learned so much. As for the fireplace...

... I really don't know the clinical reason it would bother you, but by

all means if it does then it is probably not good for you. I avoid

smokers, cologne and strong cleaning supplies as I have trouble with all

of those.

> Â

> Patti, 59, Indianapolis, IPF 2007

>

[Guest guest]

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 9, 2009 12:55:43 PMSubject: I'm New

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or

heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat

[Guest guest]

Pat,

Welcome to the board! It sounds like you've been coping with this for a while now. My name is Beth and I was diagnosed with fibrotic nsip in June of 2006. Believe me you've landed in a place where people understand what this is like. We "get it" in a way that other people in your life, family and friends, don't and can't.

I'm sorry about your car accident and understand why are are anxious about driving. Did they do any kinds of tests to see why you blacked out. Barring a different problem I suspect that the blackout may have been caused by low sats. It sounds like you need to be using your oxygen much more than you do. Are you resisting that? You clearly are aware of how low your sats are dropping. You can prevent that by using your oxygen. You may also find that your coughing decreases some if you use your oxygen more regularly. Chronically low sats damage your body. When your body is deprived of oxygen cells die. Kidney cells, heart cells, liver cells, brain cells etc. You are damaging yourself by going without oxygen. Please treat yourself better.

As for the fireplace....I haven't been in a home with a woodburning fireplace since my diagnosis. I used to love a fire in a fireplace but I wouldn't risk it anymore. Smoke bothers me terribly, not to mention the additional risk posed by the oxygen. Does your husband understand how quickly a small fire could get out of control with oxygen in the house? A wood burning fireplace is not a risk I would take personally. I do however live in a home with a gas fireplace. It is a closed fireplace behind glass. The fire is not open to the room. For me that's a risk I'm willing to live with. It's all about figuring out what your options are and making the best choices for you and your family.

Pat I'm glad you're here. Please keep reading and ask any questions that come to mind. We're here for you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wed, December 9, 2009 12:55:43 PMSubject: I'm New

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or

heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat

[Guest guest]

Stefani

why don't you carry the oxygen into the store with you?

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: I'm NewTo: Breathe-Support Date: Wednesday, December 9, 2009, 2:18 PM

Pat -I only need oxygen upon exertion, but I always have my pulse oxygen setup in the car. I NEVER turn on the ignition unless the sat reads 94. Sometimes after I have been in the store, I get back to the car and my sat is down to 88. I sit in the car, turn on my tank and watch it climb to 94. I also make sure the pulse drops because if my sat is at 88, my pulse often time is too. As my Sat rises to 94, my pulse drops to 64-68. It isn't an either/or. I figure it is just as important to have my pulse down to "normal". Stefani 61 year old UtahnILD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > Hi Everyone,> >> > I'm new to this site. I was diagnosed with IPF 4 years ago. I've> been on oxygen at night for a year, and with exertion during the day. I> now have to use it when I go out and about. One morning I was going to> run an errand about 10 minutes form my house. I didn't feel too well,> but I didn't use

my oxygen. I had a wreck. Ran up into a yard and hit> a big decorative bolder. I must have blacked out, because I don't> remember what happened. That was two months ago and I've been afraid to> drive since. Now I feel trapped, because I can't go out whenever I> want, and have to depend on someone else to take me. Sometimes my> oxygen level drops to 78-79 If I don't have it on. I cough a lot also.> >> > I would like to know if any of you have a problem with a fireplace. > My husband likes to burn our fireplace, but it really bothers me. > Anyone that doesn't have a problem breathing just doesn't understand> this disease. I would rather have cancer or heart disease.> >> > I've rambled..... hope I made sense. Anxious to hear from anyone. > It's so nice to be in contact with other people that understand.> >> > Pat>

>>

[Guest guest]

bruce

i thought like barbara -- that the fireplace was dangerous when using oxygen

i go to AC moore pretty often these days

i go in the out doors and hold my nose because they keep lots of scented stuff near the front of the store

i keep forget to write to the company to complain about the location of the scents

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: I'm NewTo: Breathe-Support Date: Wednesday, December 9, 2009, 2:42 PM

BarbaraYou are correct and the problem with fireplaces is that sparks will jumpout into the room. The issue is not just the spark contacting youroxygen. You may have a favorite chair or sofa and using oxygen on it getit highly oxygenated. So, a spark that might normally cause no problemcould hit it and cause a fire.I didn't emphasize this in my response because she had indicated thefire bothering her breathing wise and I think that is an issue for hereven if she wasn't using the oxygen.>> Oxygen use near an open flame is dangerous, I have been told.> Â> Barbara McD> PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like

forever> Beautiful Western NC>  Â> Attitude is everything.> Â>>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Wed, December 9, 2009 2:09:46 PM> Subject: I'm New>> Â> Pat,> Welcome to the group. This a very caring group of people andI (a newbie too) have learned so much. As for the fireplace..... I really don't know the clinical reason it would bother you, but byall means if it does then it is probably not good for you. I avoidsmokers, cologne and strong cleaning supplies as I have trouble with allof those.> Â> Patti, 59, Indianapolis, IPF

2007>

[Guest guest]

Pink

There are stores I just can't go into because they are so bad. Neither

nor I can take the smell of wood burning fireplaces. We have a

gas fireplace but it does not have glass enclosures like Beth's so

we don't use it.

I am fortunate that understands my sensitivities to smells and

certain things and doesn't expose me to them. I know many just don't do

that although I'm not sure why sometimes. Certainly the most sensitive

topic to me is those who still expose PF'ers to cigarette smoke. I'm so

fortunate to live in a smoke free city (including within 25 feet of the

doors of any public buildings). I forget how fortunate sometimes until I

travel.

> >

> > Oxygen use near an open flame is dangerous, I have been told.

> > Â

> > Barbara McD

> > PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

> > Beautiful Western NC

> > Â Â

> > Attitude is everything.

> > Â

> >

> >

> >

> >

> > ____________ _________ _________ __

> > From: Patti napa73@

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Wed, December 9, 2009 2:09:46 PM

> > Subject: I'm New

> >

> > Â

> > Pat,

> > Welcome to the group. This a very caring group of people and

> I (a newbie too) have learned so much. As for the

fireplace...

> .. I really don't know the clinical reason it would bother you, but by

> all means if it does then it is probably not good for you. I

avoid

> smokers, cologne and strong cleaning supplies as I have trouble with

all

> of those.

> > Â

> > Patti, 59, Indianapolis, IPF 2007

> >

>

[Guest guest]

Hi Pat, Welcome to the group!

I'm so sorry to hear about your accident. I hope you will be able to drive again one day because with oxygen use we can live very independent. I live alone with my cat and dog and need to use my oxygen for exertion. But that means even the smallest of exertions, like the 15 feet walk from my house to the car. Once I get in the car and my sats are good I don't need it.

The smoke produced from a fireplace is a contaminate to our lungs. I don't know about anyone else but part of my treatment is to avoid inhaled contaminates that could further damage my diseased lungs.

I have a fireplace in my home and used it last winter (before my diagnosis) on cold nights and would wake up in the morning with a terrible coughing attack and out of breath. I realized it was the smoke that lingers in the house from the wood burning. This year I wont' be using my fireplace at all. I love the beauty, warmth and smell of wood burning and popping in a fireplace, but its not worth the danger. There is a lot of smoke that lingers in the house, not to mention the possibility of a spark starting a fire and accelerating because of my oxygen in the house. I'll miss it, but its okay because protecting my lungs from further damage is more important now. My kids would love for me to cave-in on Christmas and build a fire in the fireplace, but I won't do it and they now respect the changes we have had to make and want me to have a safe and healthy environment.

What I could do is get one of those electric (fake) fire log inserts and get the same effect.

If your husband insists on have "his fire" you should at least close the door to your bedroom so you don't enhale the smoke all night while you're sleeping. And don't sit close to the fire when you're oxygen is running!

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Wed, December 9, 2009 9:55:43 AMSubject: I'm New

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or

heart disease. I've rambled..... hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat

[Guest guest]

Hi Pat, I really cannot tolerate anything burning, even candles. Cigarette smoke is the worst-it seems to take my breath away.PJ I'm New

Hi Everyone,I'm new to this site. I was diagnosed with IPF 4 years ago. I've been on oxygen at night for a year, and with exertion during the day. I now have to use it when I go out and about. One morning I was going to run an errand about 10 minutes form my house. I didn't feel too well, but I didn't use my oxygen. I had a wreck. Ran up into a yard and hit a big decorative bolder. I must have blacked out, because I don't remember what happened. That was two months ago and I've been afraid to drive since. Now I feel trapped, because I can't go out whenever I want, and have to depend on someone else to take me. Sometimes my oxygen level drops to 78-79 If I don't have it on. I cough a lot also. I would like to know if any of you have a problem with a fireplace. My husband likes to burn our fireplace, but it really bothers me. Anyone that doesn't have a problem breathing just doesn't understand this disease. I would rather have cancer or heart disease. I've rambled.....hope I made sense. Anxious to hear from anyone. It's so nice to be in contact with other people that understand.Pat