Re: long time

[Guest guest]

Tony

Well, I don't understand the refuse to take it full time part....when

one takes it should be based on oxygen saturation levels doing different

things. It's not how you feel as much as the damage being too low can

cause to other organs.

Now as to the headache, is it something like a sinus headache? If so,

which way are the prongs of your cannula turned? If they are turned up,

try down. What brand of cannula do you have? You might try cutting the

prongs a little shorter or another brand. What level of oxygen are you

using? Are you using a humidifier on your oxygen? Dryness can be a

problem if not.

I had the headaches when I first tried but it was the cannula I was

given. Haven't had the problem since although with my allergies I do get

very stuffy and sometimes it goes into the ears and I have to take meds

for that.

>

> Hey I know its been awhile since I have been here but I do have a

> question.

>

> I finally bit the weiney and got on O2, I refuse to take it full time

> but at times it is really helpful. But I get such a damn headache,

> almost as bad a a vigara headache. So does it go away after a while?

> Come on now, the headache not the affects of the lil blue pill lol

>

[Guest guest]

-Well Bruce it's like this I aint gonna die anchored to some damn

machine. I will die some day but what the hell we all are, trying to

mount o2 tanks on my Harley. Besides that I have a concentrator (how

do you spell it) set at 3L/M the cannules are abourt 3/8 inch long.

One problem is that my nose been broken so many times it don't work

that great anyhow. Nope just o2 no humidifer.I guess it like a sinus

headache and my nose and throat dry out. But added to the headache is

i get dizzy and nausa with it, kinda like an inner ear ache. or too

many crown and cokes

-- In Breathe-Support , " Bruce Moreland "

wrote:

>

>

> Tony

>

> Well, I don't understand the refuse to take it full time

part....when

> one takes it should be based on oxygen saturation levels doing

different

> things. It's not how you feel as much as the damage being too low

can

> cause to other organs.

>

> Now as to the headache, is it something like a sinus headache? If

so,

> which way are the prongs of your cannula turned? If they are turned

up,

> try down. What brand of cannula do you have? You might try cutting

the

> prongs a little shorter or another brand. What level of oxygen are

you

> using? Are you using a humidifier on your oxygen? Dryness can be a

> problem if not.

>

> I had the headaches when I first tried but it was the cannula I was

> given. Haven't had the problem since although with my allergies I

do get

> very stuffy and sometimes it goes into the ears and I have to take

meds

> for that.

>

>

>

>

>

>

>

> >

> > Hey I know its been awhile since I have been here but I do have a

> > question.

> >

> > I finally bit the weiney and got on O2, I refuse to take it full

time

> > but at times it is really helpful. But I get such a damn headache,

> > almost as bad a a vigara headache. So does it go away after a

while?

> > Come on now, the headache not the affects of the lil blue pill lol

> >

>

[Guest guest]

Tony

Well, using it or not using it is certainly your choice, but I would

suggest educating yourself on Pulmonary Hypertension if you're not

planning on using it when necessary as any choice knowing the

consequences is fine, but thats the one I'm trying most to avoid.

Unfortunately, Joyce can tell you way too much about it.

You definitely should have a humidifier. Your supplier should try other

cannulas too. Are your saturation levels low when sitting or just when

moving? Are you using at night? Sorry for so many questions but I know

the sinus headache bit and I also know it doesn't have to feel that way.

I had the problem but now use oxygen with very little problem.

> > >

> > > Hey I know its been awhile since I have been here but I do have a

> > > question.

> > >

> > > I finally bit the weiney and got on O2, I refuse to take it full

> time

> > > but at times it is really helpful. But I get such a damn headache,

> > > almost as bad a a vigara headache. So does it go away after a

> while?

> > > Come on now, the headache not the affects of the lil blue pill lol

> > >

> >

>

[Guest guest]

-I had a heart cath done a few years ago and the preasure in the

right side of my heart were high, so I already know about it. It was

suggestion I use it all the time but I don't. Sometimes I get out of

breath just breathing seems like or have a coughing fit.\

But my doc knows I have my own mind and just laughed with me, when I

told him to pick a cheek to kiss. I know it seems like I have a devil

may care attitude and I guess I do. But this is a trip I have to make

by myself and as long as I can I am going to make the rules. Not for

everyone but its just my nature to fight and rebel lol. maybe why I

was a good cop, now that is a scarey thought

-- In Breathe-Support , " Bruce Moreland "

wrote:

>

>

> Tony

>

> Well, using it or not using it is certainly your choice, but I would

> suggest educating yourself on Pulmonary Hypertension if you're not

> planning on using it when necessary as any choice knowing the

> consequences is fine, but thats the one I'm trying most to avoid.

> Unfortunately, Joyce can tell you way too much about it.

>

> You definitely should have a humidifier. Your supplier should try

other

> cannulas too. Are your saturation levels low when sitting or just

when

> moving? Are you using at night? Sorry for so many questions but I

know

> the sinus headache bit and I also know it doesn't have to feel that

way.

> I had the problem but now use oxygen with very little problem.

>

>

>

> > > >

> > > > Hey I know its been awhile since I have been here but I do

have a

> > > > question.

> > > >

> > > > I finally bit the weiney and got on O2, I refuse to take it

full

> > time

> > > > but at times it is really helpful. But I get such a damn

headache,

> > > > almost as bad a a vigara headache. So does it go away after a

> > while?

> > > > Come on now, the headache not the affects of the lil blue

pill lol

> > > >

> > >

> >

>

[Guest guest]

Tony,

I use o2 when I am active and it has benevr given me a headache. If anything it is the opposite. I get headaches when I don't use it. Not sure about anyone else.

Sarcoid/PF 3/2006 California

long time

Hey I know its been awhile since I have been here but I do have a question.I finally bit the weiney and got on O2, I refuse to take it full time but at times it is really helpful. But I get such a damn headache, almost as bad a a vigara headache. So does it go away after a while? Come on now, the headache not the affects of the lil blue pill lol

[Guest guest]

Tony

I admire your determination and not questioning your choices. I just

don't find using oxygen as such a horrible thing to have to do

considering the consequences and there are those who use it on a Harley.

The disease sucks. PH sucks. The prognosis sucks. Oxygen is a pain but

I'm personally so very thankful for it. I needed 5 lpm when out today

but the reality is without oxygen I couldn't have been out. Had I tried

to do the same things I did today but not used it I would have been in

the 70's or even 60's in saturation. I just couldn't have done it so

oxygen is the difference for me between sitting on the sofa at home 24

hours a day and leading a somewhat normal life. Now were it impacting me

as it did when I first tried it and as it is you right now, I wouldn't

be using it. Sinus headaches 24/7 aren't good. Fighting and rebelling

are good. Just be sure you really know what it is you're fighting and

rebelling against. For me, I'm fighting against surrendering and letting

it keep me from enjoying life. I've traveled more on pleasure this year

since diagnosis than any time in my adult life and more by car than

anytime ever.

Joe and Joanie are on a trip I believe or they could tell you about

mixing Harleys and oxygen as they do it.

Again I'm making choices myself that doctors don't agree with (mine are

on meds), but just be sure you're ultimately making the choices that

will serve you best.

> > > > >

> > > > > Hey I know its been awhile since I have been here but I do

> have a

> > > > > question.

> > > > >

> > > > > I finally bit the weiney and got on O2, I refuse to take it

> full

> > > time

> > > > > but at times it is really helpful. But I get such a damn

> headache,

> > > > > almost as bad a a vigara headache. So does it go away after a

> > > while?

> > > > > Come on now, the headache not the affects of the lil blue

> pill lol

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Tony,

I am afraid that you will find that neglecting to give your body the oxygen that it so desperatly needs will result in loss of function in vital organs, including your brain. I never resisted using 02. I sometimes think it may be more difficult for men. Maybe you see it as a sign of weakness. It doesn't mean that you are weak, just needy of a nutrient that your body cannot supply.

There is not a medical person on earth who would think it is healthy to walk around with saturations of less than 88. You may adjust your activity so that the drop does not occur. But, with the 02 you can be more active. If, as you say, you have pulmonary hypertension, then you have a real problem with not using supplemental oxygen. The old ticker must have oxygen and it needs to be able to get blood into your lungs.

Behave yourself, mind your doc. We would like to have you around a lot longer.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > > >> > > > > Hey I know its been awhile since I have been here but I do > have a> > > > > question.> > > > >> > > > > I finally bit the weiney and got on O2, I refuse to take it > full> > > time> > > > > but at times it is really helpful. But I get such a damn > headache,> > > > > almost as bad a a vigara headache. So does it go away after a> > > while?> > > > > Come on now, the headache not the affects of the lil blue > pill lol> > > > >> > > >> > >> >>

[Guest guest]

Hi Tony,

I don't know a lot, as there are many people who have had more experience then I, but I have a great Pulmonologist and I just saw him a few days ago. He keeps in close contact with a friend of his at UCLA that is doing research on IPF. From what he has told me there is nothing yet, worth the side effects. The only important thing,is to have enough 02. He said you can't have too much, but be careful not to have to little!

Sounds like we all hate, but it's keeping us alive. I can't imagine what it was like before they found a way for us to have 02 at home and to carry around.

I don't know if this helped, but I wish you good luck!

TerryTerry Pennisi 11/07 IPF Nevada

Subject: long timeTo: Breathe-Support Date: Saturday, July 19, 2008, 10:45 PM

Hey I know its been awhile since I have been here but I do have a question.I finally bit the weiney and got on O2, I refuse to take it full time but at times it is really helpful. But I get such a damn headache, almost as bad a a vigara headache. So does it go away after a while? Come on now, the headache not the affects of the lil blue pill lol

[Guest guest]

Joyce

I know its a broad sweeping statement but its somewhat along the lines

of what you said regarding men-I believe the very active men struggle

and fight it the most because they feel the greatest loss. I have to

admit that I wasn't out playing three sets of tennis or a round of golf

or hunting or working on my farm so I didn't experience those losses.

Honestly to some extent I'm able to enjoy most of the things I did

before. I'm also very lucky that I enjoy the computer as thats something

that I will always be able to enjoy.

I hate the disease but I love oxygen. Oxygen is whats giving me some

quality of life today and protecting my organs. Without supplemental

oxygen I'd either be confined to sitting and bed or I'd be breathless

and miserable and destroying myself. It's amazing the things you can do

with oxygen. We've had members on their tractors, their mowers, their

Harleys, members traveling, members doing so many things.

I also feel lucky that I came here at the start and saw what people were

doing who were in much worse condition than I was. If ever I needed a

role model on continuing to live I had it in Gwynne. When someone who is

on 10 liters sitting and 15 moving goes to all the trouble of getting

dressed and meeting you for lunch, you remember that each time you might

be tempted to make an excuse. Now, I don't intend to be getting out as

she was at that level, but I do intend to enjoy doing whatever I can.

I know you can't do the things you wish and you have a lot of pain. But

I also know that you're still in social contact with friends and by that

and the posts you make here you sure do still contribute to all of us.

My advice to anyone too is do as much as you can as early as you can.

Yes, it won't be as easy or possible later so put nothing off. But,

please do it with proper oxygen. I have no idea if I'll be trip worthy

next May. Thats why I made sure nothing stopped me from making the long

trip through NC and to see family this May.

I recall before Wally's fundraiser in Snyder there were so many excuses

not to go. Awful weather was forecast, it was a drive longer than the

event, oh I can go on and on. Partly guilt as I'd committed and partly

because I knew I couldn't start making excuses, I went. The weather

turned out ok and it was an absolutely incredible trip. I met Wally and

his family and friends, saw Leanne again, met and her friends and

saw a community that had an unbelievable love for a man and joined our

cause.

> > > > > >

> > > > > > Hey I know its been awhile since I have been here but I do

> > have a

> > > > > > question.

> > > > > >

> > > > > > I finally bit the weiney and got on O2, I refuse to take it

> > full

> > > > time

> > > > > > but at times it is really helpful. But I get such a damn

> > headache,

> > > > > > almost as bad a a vigara headache. So does it go away after

a

> > > > while?

> > > > > > Come on now, the headache not the affects of the lil blue

> > pill lol

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Bruce,

Well said, my friend. I also hate this dreadful disease, but love my oxygen.

At this point I am on 10L except when moving about, taking a shower, etc. Then I hook up to 16L by hooking onto two tanks. I keep my E tank with a mask next to me all the time. When I get short of breath and cannot get a breath in I put the mask over the cannula and pop on another 15L. Just long enough to cause me to breathe in.

Yes, Bruce, I think you will be out and about when on 10L. You have shown your bravery by the trips and independance that you exhibit. I think you will amaze yourself.

I went to bible class, worship service and back for evening services today. In between all of that is nebulizer treatments, changing the sterile bandage which takes about 45 minutes, making the Flonase and changing all that out, another 45 minutes......etc, etc. I am pooped. Tomorrow I will be flat! But, I squeezed the most out of today that I could.

You will, too......I know you will.....but I hope it is years and years from now.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > > > > >> > > > > > > Hey I know its been awhile since I have been here but I do> > > have a> > > > > > > question.> > > > > > >> > > > > > > I finally bit the weiney and got on O2, I refuse to take it> > > full> > > > > time> > > > > > > but at times it is really helpful. But I get such a damn> > > headache,> > > > > > > almost as bad a a vigara headache. So does it go away after> a> > > > > while?> > > > > > > Come on now, the headache not the affects of the lil blue> > > pill lol> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Joyce

Whatever I am able to do will be because of incredible role models like

you. You were quite active today but you went to bible class and worship

and evening services because you wanted to. God would have excused you

and you certainly have many reasons not to have gone. However, it was

important to you, made you feel better, put you among good people and

friends, and was just good for you.

Yes, you already know tomorrow is a day off. But, so what. We just do

what we can and what makes us mentally and emotionally healthier.

> > > > > > > >

> > > > > > > > Hey I know its been awhile since I have been here but I

do

> > > > have a

> > > > > > > > question.

> > > > > > > >

> > > > > > > > I finally bit the weiney and got on O2, I refuse to take

> it

> > > > full

> > > > > > time

> > > > > > > > but at times it is really helpful. But I get such a damn

> > > > headache,

> > > > > > > > almost as bad a a vigara headache. So does it go away

> after

> > a

> > > > > > while?

> > > > > > > > Come on now, the headache not the affects of the lil

blue

> > > > pill lol

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Tony,

Wow, you are a great reminder that everyone has to pick their way through this in their own way. You choose the way you want to do this and it's your path and yours alone.

Your path is very different from mine. I've been on O2 24/7 for just over 2 years now. Far from the picture you seem to have in mind, I don't sit around "anchored to some machine". I am in fact MUCH more active than I would be able to be off the oxygen. If I didn't use my oxygen all the time, I'd be so sick and miserable, coughing all the time that I wouldn't be able to do much of anything. Have oxygen, will travel is my motto. It's not the life I pictured for myself but it's a good life nonetheless.

Just leave room in your head and heart for flexibility as your disease progresses but if you choose less oxygen and shorter life span that's your decision to make.

As far as the headaches go I suspect you need humidity in the form of a water bottle hooked up to your concentrator. Ask your oxygen company to set it up for you or talk to your pulmo. The fact that your complaining of dryness in addition to the headache makes me think you need the water bottle.

Hope that helps!

Beth

Age 48 Fibrotic NSIP 06/06 UCTD 07/08

Change everything. Love and Forgive

Re: long time

-I had a heart cath done a few years ago and the preasure in the right side of my heart were high, so I already know about it. It was suggestion I use it all the time but I don't. Sometimes I get out of breath just breathing seems like or have a coughing fit.\But my doc knows I have my own mind and just laughed with me, when I told him to pick a cheek to kiss. I know it seems like I have a devil may care attitude and I guess I do. But this is a trip I have to make by myself and as long as I can I am going to make the rules. Not for everyone but its just my nature to fight and rebel lol. maybe why I was a good cop, now that is a scarey thought-- In Breathe-Support@ yahoogroups. com, "Bruce Moreland" <brucemoreland@ ...> wrote:>> > Tony>

> Well, using it or not using it is certainly your choice, but I would> suggest educating yourself on Pulmonary Hypertension if you're not> planning on using it when necessary as any choice knowing the> consequences is fine, but thats the one I'm trying most to avoid.> Unfortunately, Joyce can tell you way too much about it.> > You definitely should have a humidifier. Your supplier should try other> cannulas too. Are your saturation levels low when sitting or just when> moving? Are you using at night? Sorry for so many questions but I know> the sinus headache bit and I also know it doesn't have to feel that way.> I had the problem but now use oxygen with very little problem.> > > > > > >> > > > Hey I know its been awhile since I have been

here but I do have a> > > > question.> > > >> > > > I finally bit the weiney and got on O2, I refuse to take it full> > time> > > > but at times it is really helpful. But I get such a damn headache,> > > > almost as bad a a vigara headache. So does it go away after a> > while?> > > > Come on now, the headache not the affects of the lil blue pill lol> > > >> > >> >>

[Guest guest]

Thanks everyone for the help and opinions. I have beenfighting this

for 13 years now. So I figured out long ago to make friends with it,

do what I can. I still try to ride the bike and the horses. I love to

to the range and shoot, but bullets and o2 don't mix well lol. and

most of the events are timed. They don't use a stop watch on me any

more they use a calender.

I think perhaps the water bottle may be the answer I need, maybe I

should get some of the kinks taken out of this broken nose too.

This is a trip we all on here are taking and must take alone. It is

wonderful to have frineds and family to support us, but no one but

those of us on here can know what it is to go thru this. But I got it

and I will deal with it on my terms. Death will take me screaming and

fighting all the way.

I have no doubt that one day I will have no choice but to stay on 02

full time.Maybe I am doing it wrong and making it worse on myself by

not doing it now. I may go slower and take longer to do things but I

am doing it on my terms.

Thanks for the help and for listening

> > > > >

> > > > > Hey I know its been awhile since I have been here but I do

> have a

> > > > > question.

> > > > >

> > > > > I finally bit the weiney and got on O2, I refuse to take it

> full

> > > time

> > > > > but at times it is really helpful. But I get such a damn

> headache,

> > > > > almost as bad a a vigara headache. So does it go away after

a

> > > while?

> > > > > Come on now, the headache not the affects of the lil blue

> pill lol

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Tony et al..recently put on TRACLEER for my PAH and the pressure was reduced 50% from a year ago. Folks might want to talk to their Doc's. Special program and quite expensive.

Jimbo/Lubbock/IPF/Aug06Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today.

[Guest guest]

Hi Jim,

Glad to hear the tracleer is working for you. I have IPF but not PAH---I just entered the Tracleer study 1 week ago. It is a blind study where 2 out of 3 get the drug and the odd man out gets a placebo. I was wondering if you had any side effects with the drug?

My wife checked with the Pharmacist and yes the drug is very expensive, 60 pills= 1 months supply was $5,442.00. Pocket change---right??? LOL.

G. UIP/IPF 5/07 AZ.

[Guest guest]

I been on Tracleer for over a year. No problems from it except it only lowered my lung pressure from 56 mm to 47mm. So am now taking Revatio along with it. I pay $22 a month for it, I was told it was $3,000 a month P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: long timeTo: Breathe-Support Date: Monday, July 21, 2008, 9:19 PM

Hi Jim,

Glad to hear the tracleer is working for you. I have IPF but not PAH---I just entered the Tracleer study 1 week ago. It is a blind study where 2 out of 3 get the drug and the odd man out gets a placebo. I was wondering if you had any side effects with the drug?

My wife checked with the Pharmacist and yes the drug is very expensive, 60 pills= 1 months supply was $5,442.00. Pocket change---right? ?? LOL.

G. UIP/IPF 5/07 AZ.

[Guest guest]

Thanks for the info P.---I hope I'm one of the lucky guys that get the drug and not the

placebo----time will tell.

G UIP/IPF 5/07 AZ