Re: My Lung Doctor says something new every time I see her.

[Guest guest]

Hi, Ann: You seem as disgusted as I am with my pulmonary Dr. I am not on anything but oxygen 2L. I was diagnosed for two years as having bronchitis. I kept telling my Dr. that there was something wrong with my lungs. In March of last year I had a blood clot go to my lung. After doing an MRI and x-rays, I was told I needed a biopsy of my lungs, because my lungs did not look normal. My insurance will not pay for me to go into a study group at Vanderbilt. I have just recently been put on an organ list. At least I think I have been. My doctor said he would, but how am I to know if he did or not. I am suppose to see a lung transplant Dr. in Louisville, but after several months, no one has called me to tell me I am to go to my first appointment with him. I feel like a nobody to the medical people. Does anybody have any suggestions to the type of treatment that I need so that I can mention this to

my pulmonary Dr. the next time I see him. (which isn't very often). Yes, I too have been diagnosed with Pulmonary Fibrosis. I forgot to mention that. I am 48, female, in a long term relationship, and have almost no family for support. Ann, I feel for you, but don't cut your life short just because these dumb doctors don't know or care about what they are doing. I believe by educating ourselves about this disease we can help keep ourselves alive, whether the doctors want to or not. Hang in there, Barb happyyellowroses wrote: Idiopathic pulmonary pneumonitis is what my doctor told me I had, as she was suprised I am still alive (after 3 weeks on a vent in Critical Care Unit. She actually said I do not have Fibrosis,

yet my lungs became so wet, they stiffened. I looked up Idiopathic pulmonary pneumonitis on the internet and it is the same thing as Idiopathic pulmonary Fibrosis. Does she think I am stupid??? Every 3 month visit it is something new. She wanted a sleep study test done, but I cancelled it. I don't feel the need. Now today, my monthly blood tests (CBC) for Cytoxan came back with many abnormalities and she called to say "I know you are feeling not terrific, but let's wait until your next appointment on April 10 to check xray etc." She told me not to raise my oxygen about the 4 L. even with my shortness of breath today.With my insurance company, I have no other choice of lung doctors to go to and each doctor in the group sticks to their own patients. I did manage to get into one of her partners who I quizzed and he said,"You have a very serious lung disease, Pulmonary

Fibrosis". I said,yes with a life span of 4-6 yrs. and he said, "2-4 now as you have had it 2 years and stats getting worse". Now I appreciate his honesty, and don't expect them to play God.I want quality of life not a life of more machines etc.Oxygen is all ready an extra ordinary means of life, does anyone ever think about just turning it off and let God and nature take it's course??? Ann

Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Hi Ann,

One thing that chronic disease does for you is make you look forward to Heaven. No sickness, no pain, no sadness, no tears, no separations there....I believe that with all my heart. Yet, if I am not here as long as I can be, how can I influence others to go with me.

Yes, I do get discouraged. This is a hard road. It is a struggle to get good care, medications and equipment. Finding a good doc and fighting the insurance companies is exhausting. I don't know about you, but I am the one helping myself. Family and friends are nice, but the fight is mine. The terror inside me is mine. The uncertainty is mine. The humiliation that comes from being infirm is mine. I fight against all this every day and it is exhausting.

Doctors named my Autoimmune disease every name in the book before they decided on Lupus and treated it as such. By then, damage had been done. When the lung thing started it was called Bronchitis, pneumonia, tuberculosis .... after the biopsy it was called lupus pneumonitis, then finally pulmonary fibrosis secondary to Lupus. Aaaargh!

I do have a pulmonary doctor that is so supportive and intelligent. He has been my doctor since right before biopsy. Except for a couple of years when I saw two different female docs because my insurance changed. I lost years off my life because of that. Was a nightmare. I was so glad to get back to MY doc.

Please know that we have your same frustrations and fears. We are on this site to help each other through this. Ranting and venting are o.k. I get it!!! You get it!!! People outside of this disease DO NOT!

Take care of You

Love, Joyce

>> Idiopathic pulmonary pneumonitis is what my doctor told me I had, as > she was suprised I am still alive (after 3 weeks on a vent in > Critical Care Unit. She actually said I do not have Fibrosis, yet > my lungs became so wet, they stiffened. > > I looked up Idiopathic pulmonary pneumonitis on the internet and it > is the same thing as Idiopathic pulmonary Fibrosis. Does she think I > am stupid??? > > > Every 3 month visit it is something new. She wanted a sleep study > test done, but I cancelled it. I don't feel the need. Now today, my > monthly blood tests (CBC) for Cytoxan came back with many > abnormalities and she called to say "I know you are feeling not > terrific, but let's wait until your next appointment on April 10 to > check xray etc." She told me not to raise my oxygen about the 4 L. > even with my shortness of breath today.> With my insurance company, I have no other choice of lung doctors to > go to and each doctor in the group sticks to their own patients. I > did manage to get into one of her partners who I quizzed and he said,> "You have a very serious lung disease, Pulmonary Fibrosis". I said,> yes with a life span of 4-6 yrs. and he said, "2-4 now as you have > had it 2 years and stats getting worse". > > Now I appreciate his honesty, and don't expect them to play God.> > I want quality of life not a life of more machines etc.> > Oxygen is all ready an extra ordinary means of life, does anyone > > ever think about just turning it off and let God and nature take it's > > course???> > Ann>

[Guest guest]

Joyce, I love your posts! I can certainly relate to them because of my

husband. He has been on portable oxygen tanks since starting oxygen about 2

years ago. He was at 2L from the start of using oxygen--only when walking

or physically working harder than just standing and cutting hair (he's a

barber) but about 3 months ago they moved him to 4 L. Just in the last 3

months, he's continued to get worse and yesterday they moved him to 6 L

since his pulse ox was only 66 on 4 continuous Liters. So now we've moved

to another phase of this horrible disease and they're setting us up with a

different type of tanks for oxygen. We haven't received them yet but guess

will figure them out as we get them. He has had a concentrator here at home

and also at the barber shop which worked well at 4L but evidently they are

converting him because he is up to such a high level--being 6L. I

understand that we'll fill the portable tanks with some kind of machine

we'll have here at the house since these tanks only last for about 2 hours.

Something about them vaporating? Then there is an E tank or something that

will go in the vehicle for him to connect to which will last 2 or 3 days?

What I don't understand and would like some help with from this group, is

how do you go somewhere for an overnight visit somewhere? What kind of

portable units do you use for that? I don't think there is an answer to

this because as I understand it the big unit you will the tanks with is very

big and heavy and it's not like you can transport it to somewhere for an

overnight visit but yet you can't fill them and take them with you because

they evaporate. Can any of you please help me understand all of this? I

hate moving to yet another phase because I'm so scared that this is the next

to the final phase for him. He's only 56 years old! I know I've cried to

this group several times and I appreciate the opportunity to do so. I know

you all know what I'm talking about or at least have thought about it. He

is not interested in a transplant and from what our doctors say and what

we've learned, we are opting out of being on " the list " and we're going with

quality rather than quantity of life. I know the lung transplant can be a

success but he doesn't want to go through the surgery, being out of state

for it, the drugs afterwards and still not a guarantee that it will fix

anything or be successful. This is the hard part of this horrible disease

that we're currently living in. I at least take GREAT confidence in the

fact that once all of this is over for him, HE will be in a MUCH MUCH better

place! But for today, we're living it to the fullest. God bless each and

everyone of you who read this and the loved one you know that is fighting

this disease. There will be a cure some day! Thanks for letting me once

again vent! Judy

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: My Lung Doctor says something new every

>time I see her.

>Date: Fri, 17 Mar 2006 12:48:25 -0000

>

>

>Hi Ann,

>

>One thing that chronic disease does for you is make you look forward to

>Heaven. No sickness, no pain, no sadness, no tears, no separations

>there....I believe that with all my heart. Yet, if I am not here as

>long as I can be, how can I influence others to go with me.

>

>Yes, I do get discouraged. This is a hard road. It is a struggle to

>get good care, medications and equipment. Finding a good doc and

>fighting the insurance companies is exhausting. I don't know about you,

>but I am the one helping myself. Family and friends are nice, but the

>fight is mine. The terror inside me is mine. The uncertainty is mine.

>The humiliation that comes from being infirm is mine. I fight against

>all this every day and it is exhausting.

>

>Doctors named my Autoimmune disease every name in the book before they

>decided on Lupus and treated it as such. By then, damage had been done.

>When the lung thing started it was called Bronchitis, pneumonia,

>tuberculosis .... after the biopsy it was called lupus pneumonitis, then

>finally pulmonary fibrosis secondary to Lupus. Aaaargh!

>

>I do have a pulmonary doctor that is so supportive and intelligent. He

>has been my doctor since right before biopsy. Except for a couple of

>years when I saw two different female docs because my insurance changed.

>I lost years off my life because of that. Was a nightmare. I was so

>glad to get back to MY doc.

>

>Please know that we have your same frustrations and fears. We are on

>this site to help each other through this. Ranting and venting are o.k.

>I get it!!! You get it!!! People outside of this disease DO NOT!

>

>Take care of You

>

>Love, Joyce

>

>

>

> >

> > Idiopathic pulmonary pneumonitis is what my doctor told me I had, as

> > she was suprised I am still alive (after 3 weeks on a vent in

> > Critical Care Unit. She actually said I do not have Fibrosis, yet

> > my lungs became so wet, they stiffened.

> >

> > I looked up Idiopathic pulmonary pneumonitis on the internet and it

> > is the same thing as Idiopathic pulmonary Fibrosis. Does she think I

> > am stupid???

> >

> >

> > Every 3 month visit it is something new. She wanted a sleep study

> > test done, but I cancelled it. I don't feel the need. Now today, my

> > monthly blood tests (CBC) for Cytoxan came back with many

> > abnormalities and she called to say " I know you are feeling not

> > terrific, but let's wait until your next appointment on April 10 to

> > check xray etc. " She told me not to raise my oxygen about the 4 L.

> > even with my shortness of breath today.

> > With my insurance company, I have no other choice of lung doctors to

> > go to and each doctor in the group sticks to their own patients. I

> > did manage to get into one of her partners who I quizzed and he said,

> > " You have a very serious lung disease, Pulmonary Fibrosis " . I said,

> > yes with a life span of 4-6 yrs. and he said, " 2-4 now as you have

> > had it 2 years and stats getting worse " .

> >

> > Now I appreciate his honesty, and don't expect them to play God.

> >

> > I want quality of life not a life of more machines etc.

> >

> > Oxygen is all ready an extra ordinary means of life, does anyone

> >

> > ever think about just turning it off and let God and nature take it's

> >

> > course???

> >

> > Ann

> >

>

>

_________________________________________________________________

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[Guest guest]

The company that supplies my oxygen will deliver a tank of liquid oxygen to the hotel I'm going to. I use the big liquid O2 tank to sleep with and then to fill my portable tank while I'm awake. I use NeighborCare and they are located all over the country. But, any company should be able to help you if you want to go away.

--Diane Quinlan dianequinlan@...

[Guest guest]

Thank you, Judy,

Sounds like you are getting the liquid oxygen set up. I had it at one time. I liked it except for the short duration that I could be away from home. I couldn't haul the big container with me to fill up the little one. I think Leanne is going on liquid right now. My wonderful insurance decided that I could not have tanks for back up and liquid...so I went back to the concentrator and tanks.

When we travel overnight, we call the oxygen provider and they deliver a concentrator to the place we will be staying. I have been doing this oxygen thing for a few years now and I have so many stories about mishaps in traveling. Like staying in an old historic inn where the electrical outlets would not support the concentrator or getting to my destination to find that there was no connector between the tubing and the canula. Our group came up with enough band aids to hold the tubing together.

You seem like a wonderful helpmate for your husband. He is so fortunate to have you. My prayers are with you both.

Hugs,

Joyce

> > >> > > Idiopathic pulmonary pneumonitis is what my doctor told me I had, as> > > she was suprised I am still alive (after 3 weeks on a vent in> > > Critical Care Unit. She actually said I do not have Fibrosis, yet> > > my lungs became so wet, they stiffened.> > >> > > I looked up Idiopathic pulmonary pneumonitis on the internet and it> > > is the same thing as Idiopathic pulmonary Fibrosis. Does she think I> > > am stupid???> > >> > >> > > Every 3 month visit it is something new. She wanted a sleep study> > > test done, but I cancelled it. I don't feel the need. Now today, my> > > monthly blood tests (CBC) for Cytoxan came back with many> > > abnormalities and she called to say "I know you are feeling not> > > terrific, but let's wait until your next appointment on April 10 to> > > check xray etc." She told me not to raise my oxygen about the 4 L.> > > even with my shortness of breath today.> > > With my insurance company, I have no other choice of lung doctors to> > > go to and each doctor in the group sticks to their own patients. I> > > did manage to get into one of her partners who I quizzed and he said,> > > "You have a very serious lung disease, Pulmonary Fibrosis". I said,> > > yes with a life span of 4-6 yrs. and he said, "2-4 now as you have> > > had it 2 years and stats getting worse".> > >> > > Now I appreciate his honesty, and don't expect them to play God.> > >> > > I want quality of life not a life of more machines etc.> > >> > > Oxygen is all ready an extra ordinary means of life, does anyone> > >> > > ever think about just turning it off and let God and nature take it's> > >> > > course???> > >> > > Ann> > >> >> >> > _________________________________________________________________> Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/>

[Guest guest]

Hi Joyce I LOVED YOUR REPLY HERE. GOD BLESS YOU. Peggy

on 3/17/06 7:48 AM, janne5303 at joycedalton29@... wrote:

Hi Ann,

One thing that chronic disease does for you is make you look forward to Heaven. No sickness, no pain, no sadness, no tears, no separations there....I believe that with all my heart. Yet, if I am not here as long as I can be, how can I influence others to go with me.

Yes, I do get discouraged. This is a hard road. It is a struggle to get good care, medications and equipment. Finding a good doc and fighting the insurance companies is exhausting. I don't know about you, but I am the one helping myself. Family and friends are nice, but the fight is mine. The terror inside me is mine. The uncertainty is mine. The humiliation that comes from being infirm is mine. I fight against all this every day and it is exhausting.

Doctors named my Autoimmune disease every name in the book before they decided on Lupus and treated it as such. By then, damage had been done. When the lung thing started it was called Bronchitis, pneumonia, tuberculosis .... after the biopsy it was called lupus pneumonitis, then finally pulmonary fibrosis secondary to Lupus. Aaaargh!

I do have a pulmonary doctor that is so supportive and intelligent. He has been my doctor since right before biopsy. Except for a couple of years when I saw two different female docs because my insurance changed. I lost years off my life because of that. Was a nightmare. I was so glad to get back to MY doc.

Please know that we have your same frustrations and fears. We are on this site to help each other through this. Ranting and venting are o.k. I get it!!! You get it!!! People outside of this disease DO NOT!

Take care of You

Love, Joyce

>

> Idiopathic pulmonary pneumonitis is what my doctor told me I had, as

> she was suprised I am still alive (after 3 weeks on a vent in

> Critical Care Unit. She actually said I do not have Fibrosis, yet

> my lungs became so wet, they stiffened.

>

> I looked up Idiopathic pulmonary pneumonitis on the internet and it

> is the same thing as Idiopathic pulmonary Fibrosis. Does she think I

> am stupid???

>

>

> Every 3 month visit it is something new. She wanted a sleep study

> test done, but I cancelled it. I don't feel the need. Now today, my

> monthly blood tests (CBC) for Cytoxan came back with many

> abnormalities and she called to say " I know you are feeling not

> terrific, but let's wait until your next appointment on April 10 to

> check xray etc. " She told me not t

[Guest guest]

Judy, talk to your Oxygen Co. they have small concentrators, about 17 lbs. that they loan for over night or a vacation. Good Luck and God Bless Peggy

on 3/17/06 8:23 AM, Dean Cossey at dean734@... wrote:

Joyce, I love your posts! I can certainly relate to them because of my

husband. He has been on portable oxygen tanks since starting oxygen about 2

years ago. He was at 2L from the start of using oxygen--only when walking

or physically working harder than just standing and cutting hair (he's a

barber) but about 3 months ago they moved him to 4 L. Just in the last 3

months, he's continued to get worse and yesterday they moved him to 6 L

since his pulse ox was only 66 on 4 continuous Liters. So now we've moved

to another phase of this horrible disease and they're setting us up with a

different type of tanks for oxygen. We haven't received them yet but guess

will figure them out as we get them. He has had a concentrator here at home

and also at the barber shop which worked well at 4L but evidently they are

converting him because he is up to such a high level--being 6L. I

understand that we'll fill the portable tanks with some kind of machine

we'll have here at the house since these tanks only last for about 2 hours.

Something about them vaporating? Then there is an E tank or something that

will go in the vehicle for him to connect to which will last 2 or 3 days?

What I don't understand and would like some help with from this group, is

how do you go somewhere for an overnight visit somewhere? What kind of

portable units do you use for that? I don't think there is an answer to

this because as I understand it the big unit you will the tanks with is very

big and heavy and it's not like you can transport it to somewhere for an

overnight visit but yet you can't fill them and take them with you because

they evaporate. Can any of you please help me understand all of this? I

hate moving to yet another phase because I'm so scared that this is the next

to the final phase for him. He's only 56 years old! I know I've cried to

this group several times and I appreciate the opportunity to do so. I know

you all know what I'm talking about or at least have thought about it. He

is not interested in a transplant and from what our doctors say and what

we've learned, we are opting out of being on " the list " and we're going with

quality rather than quantity of life. I know the lung transplant can be a

success but he doesn't want to go through the surgery, being out of state

for it, the drugs afterwards and still not a guarantee that it will fix

anything or be successful. This is the hard part of this horrible disease

that we're currently living in. I at least take GREAT confidence in the

fact that once all of this is over for him, HE will be in a MUCH MUCH better

place! But for today, we're living it to the fullest. God bless each and

everyone of you who read this and the loved one you know that is fighting

this disease. There will be a cure some day! Thanks for letting me once

again vent! Judy

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: My Lung Doctor says something new every

>time I see her.

>Date: Fri, 17 Mar 2006 12:48:25 -0000

>

>

>Hi Ann,

>

>One thing that chronic disease does for you is make you look forward to

>Heaven. No sickness, no pain, no sadness, no tears, no separations

>there....I believe that with all my heart. Yet, if I am not here as

>long as I can be, how can I influence others to go with me.

>

>Yes, I do get discouraged. This is a hard road. It is a struggle to

>get good care, medications and equipment. Finding a good doc and

>fighting the insurance companies is exhausting. I don't know about you,

>but I am the one helping myself. Family and friends are nice, but the

>fight is mine. The terror inside me is mine. The uncertainty is mine.

>The humiliation that comes from being infirm is mine. I fight against

>all this every day and it is exhausting.

>

>Doctors named my Autoimmune disease every name in the book before they

>decided on Lupus and treated it as such. By then, damage had been done.

>When the lung thing started it was called Bronchitis, pneumonia,

>tuberculosis .... after the biopsy it was called lupus pneumonitis, then

>finally pulmonary fibrosis secondary to Lupus. Aaaargh!

>

>I do have a pulmonary doctor that is so supportive and intelligent. He

>has been my doctor since right before biopsy. Except for a couple of

>years when I saw two different female docs because my insurance changed.

>I lost years off my life because of that. Was a nightmare. I was so

>glad to get back to MY doc.

>

>Please know that we have your same frustrations and fears. We are on

>this site to help each other through this. Ranting and venting are o.k.

>I get it!!! You get it!!! People outside of this disease DO NOT!

>

>Take care of You

>

>Love, Joyce

>

>

>

> >

> > Idiopathic pulmonary pneumonitis is what my doctor told me I had, as

> > she was suprised I am still alive (after 3 weeks on a vent in

> > Critical Care Unit. She actually said I do not have Fibrosis, yet

> > my lungs became so wet, they stiffened.

> >

> > I looked up Idiopathic pulmonary pneumonitis on the internet and it

> > is the same thing as Idiopathic pulmonary Fibrosis. Does she think I

> > am stupid???

> >

> >

> > Every 3 month visit it is something new. She wanted a sleep study

> > test done, but I cancelled it. I don't feel the need. Now today, my

> > monthly blood tests (CBC) for Cytoxan came back with many

> > abnormalities and she called to say " I know you are feeling not

> > terrific, but let's wait until your next appointment on April 10 to

> > check xray etc. " She told me not to raise my oxygen about the 4 L.

> > even with my shortness of breath today.

> > With my insurance company, I have no other choice of lung doctors to

> > go to and each doctor in the group sticks to their own patients. I

> > did manage to get into one of her partners who I quizzed and he said,

> > " You have a very serious lung disease, Pulmonary Fibrosis " . I said,

> > yes with a life span of 4-6 yrs. and he said, " 2-4 now as you have

> > had it 2 years and stats getting worse " .

> >

> > Now I appreciate his honesty, and don't expect them to play God.

> >

> > I want quality of life not a life of more machines etc.

> >

> > Oxygen is all ready an extra ordinary means of life, does anyone

> >

> > ever think about just turning it off and let God and nature take it's

> >

> > course???

> >

> > Ann

> >

>

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

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[Guest guest]

Diane,

What do you do when you are out (for dinner or a movie, etc.) when the Helios runs out? Do you have tanks for back up? That was my problem. I couldn't go to bible class, church and to eat without running out. The insurance would not let me keep both so I had to go back to the concentrator and tanks.

Thanks

Joyce >> The company that supplies my oxygen will deliver a tank of liquid oxygen to the hotel I'm going to. I use the big liquid O2 tank to sleep with and then to fill my portable tank while I'm awake. I use NeighborCare and they are located all over the country. But, any company should be able to help you if you want to go away.> > --> Diane Quinlan > dianequinlan@...>

[Guest guest]

Well, I need to think about how long I'll be away from home now....like the rest of you...I used to take an E tank with me...but now I'm confident about the Helios and I don't take anything else. I know that I am really safe for 4-5 hours and I can push it more, but it always depends on how fast I breathe when I'm out. If I'm doing a lot of talking or activity, I use up more oxygen. The Marathon is supposed to last more than 12-18 hours (can't remember exactly) on 2 liters, but I'm on 4 liters. And with the pulse setting, it depends on your respiratory rate.

I don't go out a lot..it's too much of a hassle. But, that's OK...I'm really happy at home...I've got my 5 dogs to keep me company when my husband is at work...and I've got my hobbies AND I can shop on the internet!! But, it does make a big difference to be able to leave when I want. I'm lucky cause my insurance pays for it, too.

--Diane Quinlan dianequinlan@...

-------------- Original message --------------

Diane,

What do you do when you are out (for dinner or a movie, etc.) when the Helios runs out? Do you have tanks for back up?

[Guest guest]

Thanks Joyce! He's a wonderful man and I love him dearly and therefore

would do anything I could for him. He would do the same for me if it were

reversed. The concentrators we took with us a couple of times ourselves and

just wheeled it into the hotel! It was not a problem when he was at 4

Liters but he has been bumped up to 6 now and the one we had won't support 6

Liters and that's the reason we're going to the other kind. They assure us

that it will be all worked out for us and I believe them. They've been

wonderful. My husband is a Veteran and all our supplies come through them.

I have NO complaints at all about any of the treatments we've gotten--except

of course that there isn't much in the way of treatment but that's not the

VAs fault. They have even ordered my husband a scooter now and a lift for

our vehicle! I was impressed! I am an amputee and walk with crutches and

couldn't push him in a wheelchair and that's the reason for the scooter. He

has to go to scooter school first though! Ha!! We've had a few laughs over

that. Thanks for the encouragement. We'll all get through this! Judy

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: My Lung Doctor says something new every time

>I see her.

>Date: Fri, 17 Mar 2006 14:02:24 -0000

>

>

>Thank you, Judy,

>

>Sounds like you are getting the liquid oxygen set up. I had it at one

>time. I liked it except for the short duration that I could be away

>from home. I couldn't haul the big container with me to fill up the

>little one. I think Leanne is going on liquid right now. My wonderful

>insurance decided that I could not have tanks for back up and

>liquid...so I went back to the concentrator and tanks. [:-s]

>

>When we travel overnight, we call the oxygen provider and they deliver a

>concentrator to the place we will be staying. I have been doing this

>oxygen thing for a few years now and I have so many stories about

>mishaps in traveling. Like staying in an old historic inn where the

>electrical outlets would not support the concentrator or getting to my

>destination to find that there was no connector between the tubing and

>the canula. Our group came up with enough band aids to hold the tubing

>together.

>

>You seem like a wonderful helpmate for your husband. He is so fortunate

>to have you. My prayers are with you both.

>

>Hugs,

>

>Joyce

>

>

>

> > > >

> > > > Idiopathic pulmonary pneumonitis is what my doctor told me I had,

>as

> > > > she was suprised I am still alive (after 3 weeks on a vent in

> > > > Critical Care Unit. She actually said I do not have Fibrosis, yet

> > > > my lungs became so wet, they stiffened.

> > > >

> > > > I looked up Idiopathic pulmonary pneumonitis on the internet and

>it

> > > > is the same thing as Idiopathic pulmonary Fibrosis. Does she think

>I

> > > > am stupid???

> > > >

> > > >

> > > > Every 3 month visit it is something new. She wanted a sleep study

> > > > test done, but I cancelled it. I don't feel the need. Now today,

>my

> > > > monthly blood tests (CBC) for Cytoxan came back with many

> > > > abnormalities and she called to say " I know you are feeling not

> > > > terrific, but let's wait until your next appointment on April 10

>to

> > > > check xray etc. " She told me not to raise my oxygen about the 4 L.

> > > > even with my shortness of breath today.

> > > > With my insurance company, I have no other choice of lung doctors

>to

> > > > go to and each doctor in the group sticks to their own patients. I

> > > > did manage to get into one of her partners who I quizzed and he

>said,

> > > > " You have a very serious lung disease, Pulmonary Fibrosis " . I

>said,

> > > > yes with a life span of 4-6 yrs. and he said, " 2-4 now as you have

> > > > had it 2 years and stats getting worse " .

> > > >

> > > > Now I appreciate his honesty, and don't expect them to play God.

> > > >

> > > > I want quality of life not a life of more machines etc.

> > > >

> > > > Oxygen is all ready an extra ordinary means of life, does anyone

> > > >

> > > > ever think about just turning it off and let God and nature take

>it's

> > > >

> > > > course???

> > > >

> > > > Ann

> > > >

> > >

> > >

> >

> > _________________________________________________________________

> > Express yourself instantly with MSN Messenger! Download today - it's

>FREE!

> > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

> >

>

>

_________________________________________________________________

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[Guest guest]

Judy,

This is Joyce from PF group. I miss hearing from you. I would like to know how things are going with you all. Is your husband doing o.k.?? Are you o.k. I know that he was getting worse the last time I talked to you. Please let us help you if you need support and just to rant and rave. You can e-mail me if you want. My prayers are with you both.

Hugs,

Joyce PF > > >> > > Idiopathic pulmonary pneumonitis is what my doctor told me I had, as> > > she was suprised I am still alive (after 3 weeks on a vent in> > > Critical Care Unit. She actually said I do not have Fibrosis, yet> > > my lungs became so wet, they stiffened.> > >> > > I looked up Idiopathic pulmonary pneumonitis on the internet and it> > > is the same thing as Idiopathic pulmonary Fibrosis. Does she think I> > > am stupid???> > >> > >> > > Every 3 month visit it is something new. She wanted a sleep study> > > test done, but I cancelled it. I don't feel the need. Now today, my> > > monthly blood tests (CBC) for Cytoxan came back with many> > > abnormalities and she called to say "I know you are feeling not> > > terrific, but let's wait until your next appointment on April 10 to> > > check xray etc." She told me not to raise my oxygen about the 4 L.> > > even with my shortness of breath today.> > > With my insurance company, I have no other choice of lung doctors to> > > go to and each doctor in the group sticks to their own patients. I> > > did manage to get into one of her partners who I quizzed and he said,> > > "You have a very serious lung disease, Pulmonary Fibrosis". I said,> > > yes with a life span of 4-6 yrs. and he said, "2-4 now as you have> > > had it 2 years and stats getting worse".> > >> > > Now I appreciate his honesty, and don't expect them to play God.> > >> > > I want quality of life not a life of more machines etc.> > >> > > Oxygen is all ready an extra ordinary means of life, does anyone> > >> > > ever think about just turning it off and let God and nature take it's> > >> > > course???> > >> > > Ann> > >> >> >> > _________________________________________________________________> Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/>

[Guest guest]

Thanks for caring about us! He is still here with me--on 6 liters oxygen

now. He goes back to the VA on the 18th of this month and scared about they

will need to up it even more. The liquid oxygen is working out fine though

even though we weren't sure when we started it. He still works 4 days a

week as a barber and encourage him to do so because the more active he is

the more time I feel he has left. He does not want a lung transplant and

vetoed that idea a year or more ago. We are expecting our newest grandson,

daughter and son in law from Okinawa Japan (he is an MP in the Army) on Wed.

I'm so thankful that Dean will get to see him--that was my biggest fear

and most often prayed prayer that he would get to see this grandson. There

is always something to be grateful for. thanks for caring. We're hanging

in there! Judy

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: My Lung Doctor says something new every time

>I see her.

>Date: Sun, 02 Jul 2006 11:31:58 -0000

>

>

>Judy,

>

>This is Joyce from PF group. I miss hearing from you. I would like to

>know how things are going with you all. Is your husband doing o.k.??

>Are you o.k. I know that he was getting worse the last time I talked to

>you. Please let us help you if you need support and just to rant and

>rave. You can e-mail me if you want. My prayers are with you both.

>

>Hugs,

>

>Joyce PF

>

> > > >

> > > > Idiopathic pulmonary pneumonitis is what my doctor told me I had,

>as

> > > > she was suprised I am still alive (after 3 weeks on a vent in

> > > > Critical Care Unit. She actually said I do not have Fibrosis, yet

> > > > my lungs became so wet, they stiffened.

> > > >

> > > > I looked up Idiopathic pulmonary pneumonitis on the internet and

>it

> > > > is the same thing as Idiopathic pulmonary Fibrosis. Does she think

>I

> > > > am stupid???

> > > >

> > > >

> > > > Every 3 month visit it is something new. She wanted a sleep study

> > > > test done, but I cancelled it. I don't feel the need. Now today,

>my

> > > > monthly blood tests (CBC) for Cytoxan came back with many

> > > > abnormalities and she called to say " I know you are feeling not

> > > > terrific, but let's wait until your next appointment on April 10

>to

> > > > check xray etc. " She told me not to raise my oxygen about the 4 L.

> > > > even with my shortness of breath today.

> > > > With my insurance company, I have no other choice of lung doctors

>to

> > > > go to and each doctor in the group sticks to their own patients. I

> > > > did manage to get into one of her partners who I quizzed and he

>said,

> > > > " You have a very serious lung disease, Pulmonary Fibrosis " . I

>said,

> > > > yes with a life span of 4-6 yrs. and he said, " 2-4 now as you have

> > > > had it 2 years and stats getting worse " .

> > > >

> > > > Now I appreciate his honesty, and don't expect them to play God.

> > > >

> > > > I want quality of life not a life of more machines etc.

> > > >

> > > > Oxygen is all ready an extra ordinary means of life, does anyone

> > > >

> > > > ever think about just turning it off and let God and nature take

>it's

> > > >

> > > > course???

> > > >

> > > > Ann

> > > >

> > >

> > >

> >

> > _________________________________________________________________

> > Express yourself instantly with MSN Messenger! Download today - it's

>FREE!

> > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

> >

>

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Judy,

I am so glad that Dean is doing o.k. Hey, if he can go to work and is doing something he loves....it is the best thing for him. I am so thrilled that the baby is coming. How old is he? That is the best medicine that there is. You all enjoy. You tell him to hang in there and we are thinking of him and praying for him. I want to hear from you more often.

Hugs,

Joyce PF 1997

> > > > >> > > > > Idiopathic pulmonary pneumonitis is what my doctor told me I had,> >as> > > > > she was suprised I am still alive (after 3 weeks on a vent in> > > > > Critical Care Unit. She actually said I do not have Fibrosis, yet> > > > > my lungs became so wet, they stiffened.> > > > >> > > > > I looked up Idiopathic pulmonary pneumonitis on the internet and> >it> > > > > is the same thing as Idiopathic pulmonary Fibrosis. Does she think> >I> > > > > am stupid???> > > > >> > > > >> > > > > Every 3 month visit it is something new. She wanted a sleep study> > > > > test done, but I cancelled it. I don't feel the need. Now today,> >my> > > > > monthly blood tests (CBC) for Cytoxan came back with many> > > > > abnormalities and she called to say "I know you are feeling not> > > > > terrific, but let's wait until your next appointment on April 10> >to> > > > > check xray etc." She told me not to raise my oxygen about the 4 L.> > > > > even with my shortness of breath today.> > > > > With my insurance company, I have no other choice of lung doctors> >to> > > > > go to and each doctor in the group sticks to their own patients. I> > > > > did manage to get into one of her partners who I quizzed and he> >said,> > > > > "You have a very serious lung disease, Pulmonary Fibrosis". I> >said,> > > > > yes with a life span of 4-6 yrs. and he said, "2-4 now as you have> > > > > had it 2 years and stats getting worse".> > > > >> > > > > Now I appreciate his honesty, and don't expect them to play God.> > > > >> > > > > I want quality of life not a life of more machines etc.> > > > >> > > > > Oxygen is all ready an extra ordinary means of life, does anyone> > > > >> > > > > ever think about just turning it off and let God and nature take> >it's> > > > >> > > > > course???> > > > >> > > > > Ann> > > > >> > > >> > > >> > >> > > _________________________________________________________________> > > Express yourself instantly with MSN Messenger! Download today - it's> >FREE!> > > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/> > >> >> >> > _________________________________________________________________> Express yourself instantly with MSN Messenger! Download today - it's FREE! > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/>

[Guest guest]

Thanks Joyce! We will hang on as long as possible! The grandson is 8

months old, crawling everywhere and has 2 teeth! We can hardly wait! I'll

post after they leave on July 23 cause I hope to be really busy till then

playing with the little guy and taking the daughter shopping, eating out,

cooking, having a get together with my family in North Arkansas and one with

Dean's in south Arkansas. Should be fun! Thanks for any and all prayers!

Judy

>

>Reply-To: Breathe-Support

>To: Breathe-Support

>Subject: Re: My Lung Doctor says something new every time

>I see her.

>Date: Tue, 04 Jul 2006 00:16:20 -0000

>

>

>Judy,

>

>I am so glad that Dean is doing o.k. Hey, if he can go to work and is

>doing something he loves....it is the best thing for him. I am so

>thrilled that the baby is coming. How old is he? That is the best

>medicine that there is. You all enjoy. You tell him to hang in there

>and we are thinking of him and praying for him. I want to hear from you

>more often.

>

>Hugs,

>

>Joyce PF 1997

>

>

>

> > > > > >

> > > > > > Idiopathic pulmonary pneumonitis is what my doctor told me I

>had,

> > >as

> > > > > > she was suprised I am still alive (after 3 weeks on a vent in

> > > > > > Critical Care Unit. She actually said I do not have Fibrosis,

>yet

> > > > > > my lungs became so wet, they stiffened.

> > > > > >

> > > > > > I looked up Idiopathic pulmonary pneumonitis on the internet

>and

> > >it

> > > > > > is the same thing as Idiopathic pulmonary Fibrosis. Does she

>think

> > >I

> > > > > > am stupid???

> > > > > >

> > > > > >

> > > > > > Every 3 month visit it is something new. She wanted a sleep

>study

> > > > > > test done, but I cancelled it. I don't feel the need. Now

>today,

> > >my

> > > > > > monthly blood tests (CBC) for Cytoxan came back with many

> > > > > > abnormalities and she called to say " I know you are feeling

>not

> > > > > > terrific, but let's wait until your next appointment on April

>10

> > >to

> > > > > > check xray etc. " She told me not to raise my oxygen about the

>4 L.

> > > > > > even with my shortness of breath today.

> > > > > > With my insurance company, I have no other choice of lung

>doctors

> > >to

> > > > > > go to and each doctor in the group sticks to their own

>patients. I

> > > > > > did manage to get into one of her partners who I quizzed and

>he

> > >said,

> > > > > > " You have a very serious lung disease, Pulmonary Fibrosis " . I

> > >said,

> > > > > > yes with a life span of 4-6 yrs. and he said, " 2-4 now as you

>have

> > > > > > had it 2 years and stats getting worse " .

> > > > > >

> > > > > > Now I appreciate his honesty, and don't expect them to play

>God.

> > > > > >

> > > > > > I want quality of life not a life of more machines etc.

> > > > > >

> > > > > > Oxygen is all ready an extra ordinary means of life, does

>anyone

> > > > > >

> > > > > > ever think about just turning it off and let God and nature

>take

> > >it's

> > > > > >

> > > > > > course???

> > > > > >

> > > > > > Ann

> > > > > >

> > > > >

> > > > >

> > > >

> > > > _________________________________________________________________

> > > > Express yourself instantly with MSN Messenger! Download today -

>it's

> > >FREE!

> > > > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

> > > >

> > >

> > >

> >

> > _________________________________________________________________

> > Express yourself instantly with MSN Messenger! Download today - it's

>FREE!

> > http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

> >

>

>

_________________________________________________________________

Don’t just search. Find. Check out the new MSN Search!

http://search.msn.click-url.com/go/onm00200636ave/direct/01/