Re: A newbie with questions

[Guest guest]

Welcome to our group and we're sorry you have to be here.

Was the lung biopsy an open lung biopsy or a VATS? Were you not on any oxygen before? Perhaps you needed it but just weren't on it. However, lung biopsies could worsen your condition. Time also can. Was I a little worse after? Yes. Am I a little worse every month regardless? Yes.

Now you're in a very complex situation where you're going to need to make a lot of choices and probably talk to many doctors.

First, have you been to a hospital that performs lung transplants? Who told you that you needed to lose 100 pounds? What other issues might you have that would impact the prospects of a lung transplant? I strongly suggest, if close to you, one of the thirteen Centers of Excellence-Duke University plus those shown on the map.

https://www.ipfnet.org/

Regardless only those at the hospital where you might be getting a transplant can truely tell you your eligibility for listing. I'm bringing this up because you have a decision on the gastric surgery. I don't know what role having had gastric surgery might play in eligibility. However, I know if everything else was ok for eligibility, then you're fighting an incredibly difficult uphill battle in losing 100 pounds while on any sizable amount of prednisone (although you're almost off it now), which leads to weight gain. Thats why I say talk to the transplant center directly if you haven't. Also, as to timing, it seems to me if you do wait on the surgery, then your lung condition will be worse and bariatric surgeons may hesitate or refuse to perform it or it may put you at risk. Again, a point to discuss with a transplant center. As to which form of gastric surgery discuss that with the transplant center as to whether it would make a difference. You're facing a lot of decisions that you need information you don't have to make. Whether you would otherwise be eligible or not for a transplant is such a key. So many things factor in, from other health issues to age to just the availability of lungs at a given hospital.

You didn't mention your heart or any level of pulmonary hypertension. I'm assuming you had echocardiograms and they were ok?

Why was the prednisone dropped? I ask because it is believed by many to be beneficial with NSIP, while not so with UIP/IPF. Many here have been on CellCept as well and can give you their experiences.

I know I've asked a lot of questions but mostly to prompt you to ask more on your behalf as you face the choices ahead. You need to not accept anything that your current doctor or any of us or anyone else says without other information and opinions. For instance, I know that no one who has ever fought weight problems or had someone close who did could so casually say "lets try to lose it on your own first." In a successful weight reduction program (did he give you someone to go to?) you have at least a two year period to lose that and with your lack of ability to exercise and medications its more difficult. By the way, have you been sent to pulmonary rehab? If not, I'd strongly recommend it.

>> Hello everyone: I just found this group and I'm hoping to get some> answers to questions.> > I am 62 and was diagnosed in 9/07 with NSIP - a form of> pulmonary fibrosis. I ignored my shortness of breath symptoms until I had> 2 really bad respiratory infections and then one test led to another. I> had a lung biopsy in Sept. and since that time have become dependent on> oxygen-in short I am convinced this biopsy made my condition worse.> > > > I am currently on 3 L of O2 sitting and 6 exerting. I am> about 100 lbs overweight and I've been told that I need to lose weight> in order to be eligible for a lung transplant and also losing weight would> help my breathing. Having always been overweight to varying degrees all my> life, in my wildest dreams, I will never be able to lose that amount of wt.> I have been put on Prednisone (20 mg to start and now at 5) and Cellcept,> both are immunosuppressants.> > > > I was "approved" for a banding procedure or gastric bypass> before this diagnosis and that is probably the only way I can lose that> amout of weight. My pulmonary doc says to try to lose the wt first and> then if that doesn't work go for the least invasive surgery. Has anyone> else faced this?> > > > Can someone tell me the logistics of using oxygen on a road> trip. If I have to carry enough oxygen E-tanks to get m through a week> road trip, not only would I not have enough room for luggage, but we would> be a "rolling bomb "if we got in an accident. I can use a portable oxygen> concentrator riding in the car, eating or sitting in a motel room. I> still need the 6 liters on exertion and I'm not sure how to get this.> Has anyone had experience with this logistical nightmare.> > > > Thanks for listening and any help you can give me.> > > > Sue>

[Guest guest]

Welcome to our group and we're sorry you have to be here.

Was the lung biopsy an open lung biopsy or a VATS? Were you not on any oxygen before? Perhaps you needed it but just weren't on it. However, lung biopsies could worsen your condition. Time also can. Was I a little worse after? Yes. Am I a little worse every month regardless? Yes.

Now you're in a very complex situation where you're going to need to make a lot of choices and probably talk to many doctors.

First, have you been to a hospital that performs lung transplants? Who told you that you needed to lose 100 pounds? What other issues might you have that would impact the prospects of a lung transplant? I strongly suggest, if close to you, one of the thirteen Centers of Excellence-Duke University plus those shown on the map.

https://www.ipfnet.org/

Regardless only those at the hospital where you might be getting a transplant can truely tell you your eligibility for listing. I'm bringing this up because you have a decision on the gastric surgery. I don't know what role having had gastric surgery might play in eligibility. However, I know if everything else was ok for eligibility, then you're fighting an incredibly difficult uphill battle in losing 100 pounds while on any sizable amount of prednisone (although you're almost off it now), which leads to weight gain. Thats why I say talk to the transplant center directly if you haven't. Also, as to timing, it seems to me if you do wait on the surgery, then your lung condition will be worse and bariatric surgeons may hesitate or refuse to perform it or it may put you at risk. Again, a point to discuss with a transplant center. As to which form of gastric surgery discuss that with the transplant center as to whether it would make a difference. You're facing a lot of decisions that you need information you don't have to make. Whether you would otherwise be eligible or not for a transplant is such a key. So many things factor in, from other health issues to age to just the availability of lungs at a given hospital.

You didn't mention your heart or any level of pulmonary hypertension. I'm assuming you had echocardiograms and they were ok?

Why was the prednisone dropped? I ask because it is believed by many to be beneficial with NSIP, while not so with UIP/IPF. Many here have been on CellCept as well and can give you their experiences.

I know I've asked a lot of questions but mostly to prompt you to ask more on your behalf as you face the choices ahead. You need to not accept anything that your current doctor or any of us or anyone else says without other information and opinions. For instance, I know that no one who has ever fought weight problems or had someone close who did could so casually say "lets try to lose it on your own first." In a successful weight reduction program (did he give you someone to go to?) you have at least a two year period to lose that and with your lack of ability to exercise and medications its more difficult. By the way, have you been sent to pulmonary rehab? If not, I'd strongly recommend it.

>> Hello everyone: I just found this group and I'm hoping to get some> answers to questions.> > I am 62 and was diagnosed in 9/07 with NSIP - a form of> pulmonary fibrosis. I ignored my shortness of breath symptoms until I had> 2 really bad respiratory infections and then one test led to another. I> had a lung biopsy in Sept. and since that time have become dependent on> oxygen-in short I am convinced this biopsy made my condition worse.> > > > I am currently on 3 L of O2 sitting and 6 exerting. I am> about 100 lbs overweight and I've been told that I need to lose weight> in order to be eligible for a lung transplant and also losing weight would> help my breathing. Having always been overweight to varying degrees all my> life, in my wildest dreams, I will never be able to lose that amount of wt.> I have been put on Prednisone (20 mg to start and now at 5) and Cellcept,> both are immunosuppressants.> > > > I was "approved" for a banding procedure or gastric bypass> before this diagnosis and that is probably the only way I can lose that> amout of weight. My pulmonary doc says to try to lose the wt first and> then if that doesn't work go for the least invasive surgery. Has anyone> else faced this?> > > > Can someone tell me the logistics of using oxygen on a road> trip. If I have to carry enough oxygen E-tanks to get m through a week> road trip, not only would I not have enough room for luggage, but we would> be a "rolling bomb "if we got in an accident. I can use a portable oxygen> concentrator riding in the car, eating or sitting in a motel room. I> still need the 6 liters on exertion and I'm not sure how to get this.> Has anyone had experience with this logistical nightmare.> > > > Thanks for listening and any help you can give me.> > > > Sue>

[Guest guest]

Hi Sue

Welcome to you from across the pond. I'm sorry you've had to find us, but glad that you have.

I don't know how different things are over there, but I have a concentrator at home and a large gas cylinder for emergencies, power failures etc. When I have a long car journey I intend to use this in the car. and if I'm away for a while, then my doc has to tell the O2 supplier to arrange delivery of the portables, and collection of the empties, where I am staying.

A few of us on here feel the need to lose weight. Some to be eligable for transplant and some just to make life easier, but I do feel that a gastric band is not the best option. Can you speak to a nutritionist and get a suitable diet worked out for you? And don't sit and think I need to lose 100lbs, that's far too daunting, break it down into smaller, more negotiable amounts. Look at the first 10 or even 7lbs. That is your goal. When you have reached that you look at the next 7lbs.

I wish you much luck, and look forward to seeing your posts

Love Ze (38) Pulmonary Fibrosis, Dermatomyositis etc, for years.

>> Hello everyone: I just found this group and I'm hoping to get some> answers to questions.> > I am 62 and was diagnosed in 9/07 with NSIP - a form of> pulmonary fibrosis. I ignored my shortness of breath symptoms until I had> 2 really bad respiratory infections and then one test led to another. I> had a lung biopsy in Sept. and since that time have become dependent on> oxygen-in short I am convinced this biopsy made my condition worse.> > > > I am currently on 3 L of O2 sitting and 6 exerting. I am> about 100 lbs overweight and I've been told that I need to lose weight> in order to be eligible for a lung transplant and also losing weight would> help my breathing. Having always been overweight to varying degrees all my> life, in my wildest dreams, I will never be able to lose that amount of wt.> I have been put on Prednisone (20 mg to start and now at 5) and Cellcept,> both are immunosuppressants.> > > > I was "approved" for a banding procedure or gastric bypass> before this diagnosis and that is probably the only way I can lose that> amout of weight. My pulmonary doc says to try to lose the wt first and> then if that doesn't work go for the least invasive surgery. Has anyone> else faced this?> > > > Can someone tell me the logistics of using oxygen on a road> trip. If I have to carry enough oxygen E-tanks to get m through a week> road trip, not only would I not have enough room for luggage, but we would> be a "rolling bomb "if we got in an accident. I can use a portable oxygen> concentrator riding in the car, eating or sitting in a motel room. I> still need the 6 liters on exertion and I'm not sure how to get this.> Has anyone had experience with this logistical nightmare.> > > > Thanks for listening and any help you can give me.> > > > Sue>

[Guest guest]

Hi Sue -

I also have NSIP w/PF dx 12/2006.

You might check with your O2 provider to see if there is a carrier

at your destination that can provide a concentrator. Apria does not

have a good national reputation but I have heard of them doing this.

I traveled in January from Texas to Alabama and you are right - it

is a logical nightmare but very doable.

Good luck in your journey.

S, Lubbock, TX

NSIP w/PF 12/2006, Celiac, type 2 diab

>

> Hello everyone: I just found this group and I'm hoping to get

some

> answers to questions.

>

> I am 62 and was diagnosed in 9/07 with NSIP - a

form of

> pulmonary fibrosis. I ignored my shortness of breath symptoms

until I had

> 2 really bad respiratory infections and then one test led to

another. I

> had a lung biopsy in Sept. and since that time have become

dependent on

> oxygen-in short I am convinced this biopsy made my condition

worse.

>

>

>

> I am currently on 3 L of O2 sitting and 6

exerting. I am

> about 100 lbs overweight and I've been told that I need to

lose weight

> in order to be eligible for a lung transplant and also losing

weight would

> help my breathing. Having always been overweight to varying

degrees all my

> life, in my wildest dreams, I will never be able to lose that

amount of wt.

> I have been put on Prednisone (20 mg to start and now at 5) and

Cellcept,

> both are immunosuppressants.

>

>

>

> I was " approved " for a banding procedure or

gastric bypass

> before this diagnosis and that is probably the only way I can

lose that

> amout of weight. My pulmonary doc says to try to lose the wt

first and

> then if that doesn't work go for the least invasive surgery.

Has anyone

> else faced this?

>

>

>

> Can someone tell me the logistics of using oxygen

on a road

> trip. If I have to carry enough oxygen E-tanks to get m through

a week

> road trip, not only would I not have enough room for luggage, but

we would

> be a " rolling bomb " if we got in an accident. I can use a

portable oxygen

> concentrator riding in the car, eating or sitting in a motel

room. I

> still need the 6 liters on exertion and I'm not sure how to get

this.

> Has anyone had experience with this logistical nightmare.

>

>

>

> Thanks for listening and any help you can give me.

>

>

>

> Sue

>

[Guest guest]

Sue,

Welcome to the group! Though I am sorry you have reason to be here at all. Lung disease is a horror that most folks just don't understand. But rest assured everyone here 'gets it' in a way that people without our diagnosis can't.

You and I have an awful lot in common. I also have NSIP, specifically fibrotic NSIP as opposed to cellular or mixed. I am also about 100 pounds overweight so I know precisely how you are struggling with this issue. I am O2 dependent and have been since my diagnosis in June of 06. I'm on 3 liters at rest and 4-5 on exertion and 10-12 with a venti-mask when I'm on the treadmill.

I have struggled with my weight since I was about 10 years old. My weight problem is probably 90% emotional. I've recently become convinced it's not about what I eat but how and when I eat. At one point I considered bariatric surgery but it's a moot point for me now as nothing but a dire emergency could convince most anesthesioligists to put me under. I don't react well to sedation, my sats drop and my breathing is severely suppressed. I have begun working with a counselor on my emotional issues and am going to Alanon meetings to help cope with the alcoholism in my family and am hopeful I can get a handle on my weight. I've lost 6.5 pounds in about the last 10 days so I'm off to a good start.

As Leanne mentioned Weight Watchers is a balanced healthy approach. I've used it in the past with some success. But honestly I think almost anything can work when we're ready and if we're not ready nothing is going to work.

As to the travel issues, I am known on the board as being a bit of a 'road warrior'. I've done several road trips since my diagnosis and I've got it down to a science. I bring my concentrator with me for use in the hotels and at my destination and bring enough tanks for back up and have more delivered to my destination. Talk to whoever your provider is now well in advance of your travel dates. Let them know where you're going and what you'll need. It is there job to find a provider for you. If it's a national company that does not have an office at your destination, they have to find an alternative provider. This was done for me many times, by my old provider in NY, they did not have a location at my destination so they found an alternative, made the phone calls, faxed my prescriptions and everything I needed as at my destination when I got there. Remember that legally you have a right to

travel despite your disability. Your insurance MUST pay for your O2 needs whether you're at home or away.

Please feel free to email me anytime if you've got questions about traveling by car with O2. I've been doing it successfully for 2 years and don't intend to stop until I am just not physically capable of it any longer!

Beth in NC age 48 Fibrotic NSIP 06/06

"For as long as I shall live, I will testify to Love."

A newbie with questions

Hello everyone: I just found this group and I’m hoping to get some answers to questions.

I am 62 and was diagnosed in 9/07 with NSIP – a form of pulmonary fibrosis. I ignored my shortness of breath symptoms until I had 2 really bad respiratory infections and then one test led to another. I had a lung biopsy in Sept. and since that time have become dependent on oxygen—in short I am convinced this biopsy made my condition worse.

I am currently on 3 L of O2 sitting and 6 exerting. I am about 100 lbs overweight and I’ve been told that I need to lose weight in order to be eligible for a lung transplant and also losing weight would help my breathing. Having always been overweight to varying degrees all my life, in my wildest dreams, I will never be able to lose that amount of wt. I have been put on Prednisone (20 mg to start and now at 5) and Cellcept, both are immunosuppressants.

I was “approved” for a banding procedure or gastric bypass before this diagnosis and that is probably the only way I can lose that amout of weight. My pulmonary doc says to try to lose the wt first and then if that doesn’t work go for the least invasive surgery. Has anyone else faced this?

Can someone tell me the logistics of using oxygen on a road trip. If I have to carry enough oxygen E-tanks to get m through a week road trip, not only would I not have enough room for luggage, but we would be a “rolling bomb “if we got in an accident. I can use a portable oxygen concentrator riding in the car, eating or sitting in a motel room. I still need the 6 liters on exertion and I’m not sure how to get this. Has anyone had experience with this logistical nightmare.

Thanks for listening and any help you can give me.

Sue

[Guest guest]

MB... we have more in common. I attended Alanon for many years and the 12-step program saved my life. I won't go into it here on the board but wanted to acknowledge an Alanon friend. Alcoholics ran in my family like brown eyes!

I'm over weight too and honestly don't care as much as I used to. I'm not an over eater but do literally no exercise. I'm having a cardio workup on the 20th and then hope I can return to rehab. Don't know if it will be cardio or PT.

I think WW is a good program and fairly easy to follow.

Hey...did you see the guy on TV a couple nights ago talking about a new approach to losing weight? He will be on for 5 more weeks...In a nutshell he says, if you're hungry eat, eat consciously, eat until you are full and then STOP eating.

Watch for him...interesting.

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

A newbie with questions

Hello everyone: I just found this group and I’m hoping to get some answers to questions.

I am 62 and was diagnosed in 9/07 with NSIP – a form of pulmonary fibrosis. I ignored my shortness of breath symptoms until I had 2 really bad respiratory infections and then one test led to another. I had a lung biopsy in Sept. and since that time have become dependent on oxygen—in short I am convinced this biopsy made my condition worse.

I am currently on 3 L of O2 sitting and 6 exerting. I am about 100 lbs overweight and I’ve been told that I need to lose weight in order to be eligible for a lung transplant and also losing weight would help my breathing. Having always been overweight to varying degrees all my life, in my wildest dreams, I will never be able to lose that amount of wt. I have been put on Prednisone (20 mg to start and now at 5) and Cellcept, both are immunosuppressants.

I was “approved” for a banding procedure or gastric bypass before this diagnosis and that is probably the only way I can lose that amout of weight. My pulmonary doc says to try to lose the wt first and then if that doesn’t work go for the least invasive surgery. Has anyone else faced this?

Can someone tell me the logistics of using oxygen on a road trip. If I have to carry enough oxygen E-tanks to get m through a week road trip, not only would I not have enough room for luggage, but we would be a “rolling bomb “if we got in an accident. I can use a portable oxygen concentrator riding in the car, eating or sitting in a motel room. I still need the 6 liters on exertion and I’m not sure how to get this. Has anyone had experience with this logistical nightmare.

Thanks for listening and any help you can give me.

Sue

[Guest guest]

Sue, Welcome newbie..I also have NSIP..I

was DX in 8/05. I've been on Prednisone since DX...going from 40mg to

now 12.5.

Weight loss has always been an issue and I find that I just have to

keep moving and try to eat less. I have stayed close to the weight I

was at DX

actually lost a few due to moving from a two story to a ranch..more

walking in the house with no excuses about going up steps to

different parts of the house.I also now getting more activity with a

new grand daughter.. 4 weeks today!

.. I'm 64, married for 42 years, 3 grown married kids and two grand

daughters.

Anyway, ask anything..someone here will get the answers!!!!

Z fibriotic NSIP/05

Z

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s

too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and

MomMom to

Darah

and Sara

“I’m

gonna

be iron like a lion in Zion” Bob Marley

lsmith7892006 wrote:

Hi Sue -

I also have NSIP w/PF dx 12/2006.

You might check with your O2 provider to see if there is a carrier

at your destination that can provide a concentrator. Apria does not

have a good national reputation but I have heard of them doing this.

I traveled in January from Texas to Alabama and you are right - it

is a logical nightmare but very doable.

Good luck in your journey.

S, Lubbock, TX

NSIP w/PF 12/2006, Celiac, type 2 diab

>

> Hello everyone: I just found this group and I'm hoping to get

some

> answers to questions.

>

> I am 62 and was diagnosed in 9/07 with NSIP - a

form of

> pulmonary fibrosis. I ignored my shortness of breath symptoms

until I had

> 2 really bad respiratory infections and then one test led to

another. I

> had a lung biopsy in Sept. and since that time have become

dependent on

> oxygen-in short I am convinced this biopsy made my condition

worse.

>

>

>

> I am currently on 3 L of O2 sitting and 6

exerting. I am

> about 100 lbs overweight and I've been told that I need to

lose weight

> in order to be eligible for a lung transplant and also losing

weight would

> help my breathing. Having always been overweight to varying

degrees all my

> life, in my wildest dreams, I will never be able to lose that

amount of wt.

> I have been put on Prednisone (20 mg to start and now at 5) and

Cellcept,

> both are immunosuppressants.

>

>

>

> I was "approved" for a banding procedure or

gastric bypass

> before this diagnosis and that is probably the only way I can

lose that

> amout of weight. My pulmonary doc says to try to lose the wt

first and

> then if that doesn't work go for the least invasive surgery.

Has anyone

> else faced this?

>

>

>

> Can someone tell me the logistics of using oxygen

on a road

> trip. If I have to carry enough oxygen E-tanks to get m through

a week

> road trip, not only would I not have enough room for luggage, but

we would

> be a "rolling bomb "if we got in an accident. I can use a

portable oxygen

> concentrator riding in the car, eating or sitting in a motel

room. I

> still need the 6 liters on exertion and I'm not sure how to get

this.

> Has anyone had experience with this logistical nightmare.

>

>

>

> Thanks for listening and any help you can give me.

>

>

>

> Sue

>

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Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM

[Guest guest]

I can see I am going to have to learn on the abreviations. I am single and I am going to have my frist grandchild in August.I am hoping to get moved to Texas before the big event. I miss not being close to my three kids. When I got sick I had to move away from them and it was so hard, but I will be there for the big event one way or another.

Kathy

.. Re: Re: A newbie with questions

Sue, Welcome newbie..I also have NSIP..I was DX in 8/05. I've been on Prednisone since DX...going from 40mg to now 12.5.Weight loss has always been an issue and I find that I just have to keep moving and try to eat less. I have stayed close to the weight I was at DX actually lost a few due to moving from a two story to a ranch..more walking in the house with no excuses about going up steps to different parts of the house.I also now getting more activity with a new grand daughter.. 4 weeks today!. I'm 64, married for 42 years, 3 grown married kids and two grand daughters.Anyway, ask anything..someone here will get the answers!!!!

Z fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

lsmith7892006 wrote:

Hi Sue -I also have NSIP w/PF dx 12/2006. You might check with your O2 provider to see if there is a carrier at your destination that can provide a concentrator. Apria does not have a good national reputation but I have heard of them doing this.I traveled in January from Texas to Alabama and you are right - it is a logical nightmare but very doable.Good luck in your journey. S, Lubbock, TXNSIP w/PF 12/2006, Celiac, type 2 diab>> Hello everyone: I just found this group and I'm hoping to get some> answers to questions.> > I am 62 and was diagnosed in 9/07 with NSIP - a form of> pulmonary fibrosis. I ignored my shortness of breath

symptoms until I had> 2 really bad respiratory infections and then one test led to another. I> had a lung biopsy in Sept. and since that time have become dependent on> oxygen-in short I am convinced this biopsy made my condition worse.> > > > I am currently on 3 L of O2 sitting and 6 exerting. I am> about 100 lbs overweight and I've been told that I need to lose weight> in order to be eligible for a lung transplant and also losing weight would> help my breathing. Having always been overweight to varying degrees all my> life, in my wildest dreams, I will never be able to lose that amount of wt.> I have been put on Prednisone (20 mg to start and now at 5) and Cellcept,> both are immunosuppressants.> > > > I was "approved" for a banding procedure or gastric bypass> before this diagnosis

and that is probably the only way I can lose that> amout of weight. My pulmonary doc says to try to lose the wt first and> then if that doesn't work go for the least invasive surgery. Has anyone> else faced this?> > > > Can someone tell me the logistics of using oxygen on a road> trip. If I have to carry enough oxygen E-tanks to get m through a week> road trip, not only would I not have enough room for luggage, but we would> be a "rolling bomb "if we got in an accident. I can use a portable oxygen> concentrator riding in the car, eating or sitting in a motel room. I> still need the 6 liters on exertion and I'm not sure how to get this.> Has anyone had experience with this logistical nightmare.> > > > Thanks for listening and any help you can give me.> > > >

Sue>

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Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM

[Guest guest]

Well, feel free to ask any questions anytime. Where to Texas are you

moving? I must warn you that I'm in DFW so you might want to avoid it

here and the risk of having to meet me. Oh, and did you know we're

having a gathering in San May 2-4 and late April there is a

fund raiser and some sort of cowboy ranch kind of thing I know so

little about but will be there in West Texas near Lubbock.

> >

> > Hello everyone: I just found this group and I'm hoping to get

> some

> > answers to questions.

> >

> > I am 62 and was diagnosed in 9/07 with NSIP - a

> form of

> > pulmonary fibrosis. I ignored my shortness of breath symptoms

> until I had

> > 2 really bad respiratory infections and then one test led to

> another. I

> > had a lung biopsy in Sept. and since that time have become

> dependent on

> > oxygen-in short I am convinced this biopsy made my condition

> worse.

> >

> >

> >

> > I am currently on 3 L of O2 sitting and 6

> exerting. I am

> > about 100 lbs overweight and I've been told that I need to

> lose weight

> > in order to be eligible for a lung transplant and also losing

> weight would

> > help my breathing. Having always been overweight to varying

> degrees all my

> > life, in my wildest dreams, I will never be able to lose that

> amount of wt.

> > I have been put on Prednisone (20 mg to start and now at 5) and

> Cellcept,

> > both are immunosuppressants.

> >

> >

> >

> > I was " approved " for a banding procedure or

> gastric bypass

> > before this diagnosis and that is probably the only way I can

> lose that

> > amout of weight. My pulmonary doc says to try to lose the wt

> first and

> > then if that doesn't work go for the least invasive surgery.

> Has anyone

> > else faced this?

> >

> >

> >

> > Can someone tell me the logistics of using oxygen

> on a road

> > trip. If I have to carry enough oxygen E-tanks to get m through

> a week

> > road trip, not only would I not have enough room for luggage, but

> we would

> > be a " rolling bomb " if we got in an accident. I can use a

> portable oxygen

> > concentrator riding in the car, eating or sitting in a motel

> room. I

> > still need the 6 liters on exertion and I'm not sure how to get

> this.

> > Has anyone had experience with this logistical nightmare.

> >

> >

> >

> > Thanks for listening and any help you can give me.

> >

> >

> >

> > Sue

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG.

> Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date:

3/18/2008 8:10 AM

>

[Guest guest]

Kathy,

This may help. http://www.copd-international.com/library/Medabbreviations.htm

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 > >> > Hello everyone: I just found this group and I'm hoping to get > some> > answers to questions.> > > > I am 62 and was diagnosed in 9/07 with NSIP - a > form of> > pulmonary fibrosis. I ignored my shortness of breath symptoms > until I had> > 2 really bad respiratory infections and then one test led to > another. I> > had a lung biopsy in Sept. and since that time have become > dependent on> > oxygen-in short I am convinced this biopsy made my condition > worse.> > > > > > > > I am currently on 3 L of O2 sitting and 6 > exerting. I am> > about 100 lbs overweight and I've been told that I need to > lose weight> > in order to be eligible for a lung transplant and also losing > weight would> > help my breathing. Having always been overweight to varying > degrees all my> > life, in my wildest dreams, I will never be able to lose that > amount of wt.> > I have been put on Prednisone (20 mg to start and now at 5) and > Cellcept,> > both are immunosuppressants.> > > > > > > > I was "approved" for a banding procedure or > gastric bypass> > before this diagnosis and that is probably the only way I can > lose that> > amout of weight. My pulmonary doc says to try to lose the wt > first and> > then if that doesn't work go for the least invasive surgery. > Has anyone> > else faced this?> > > > > > > > Can someone tell me the logistics of using oxygen > on a road> > trip. If I have to carry enough oxygen E-tanks to get m through > a week> > road trip, not only would I not have enough room for luggage, but > we would> > be a "rolling bomb "if we got in an accident. I can use a > portable oxygen> > concentrator riding in the car, eating or sitting in a motel > room. I> > still need the 6 liters on exertion and I'm not sure how to get > this.> > Has anyone had experience with this logistical nightmare.> > > > > > > > Thanks for listening and any help you can give me.> > > > > > > > Sue> >> > > > No virus found in this incoming message.> Checked by AVG. > Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM>

[Guest guest]

Hi Kathy,

I have PF. I was diagnosed with it on 03/07. After I was rushed in the emergency room with difficult breathing and high blood pressure.

Irene

---- Original Message ----

To: Breathe-Support

Sent: Wed, 19 Mar 2008 8:31 am

Subject: Re: A newbie with questions

Kathy,

This may help. http://www.copd-international.com/library/Medabbreviations.htm

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

> >

> > Hello everyone: I just found this group and I'm hoping to get

> some

> > answers to questions.

> >

> > I am 62 and was diagnosed in 9/07 with NSIP - a

> form of

> > pulmonary fibrosis. I ignored my shortness of breath symptoms

> until I had

> > 2 really bad respiratory infections and then one test led to

> another. I

> > had a lung biopsy in Sept. and since that time have become

> dependent on

> > oxygen-in short I am convinced this biopsy made my condition

> worse.

> >

> >

> >

> > I am currently on 3 L of O2 sitting and 6

> exerting. I am

> > about 100 lbs overweight and I've been told that I need to

> lose weight

> > in order to be eligible for a lung transplant and also losing

> weight would

> > help my breathing. Having always been overweight to varying

> degrees all my

> > life, in my wildest dreams, I will never be able to lose that

> amount of wt.

> > I have been put on Prednisone (20 mg to start and now at 5) and

> Cellcept,

> > both are immunosuppressants.

> >

> >

> >

> > I was "approved" for a banding procedure or

> gastric bypass

> > before this diagnosis and that is probably the only way I can

> lose that

> > amout of weight. My pulmonary doc says to try to lose the wt

> first and

> > then if that doesn't work go for the least invasive surgery.

> Has anyone

> > else faced this?

> >

> >

> >

> > Can someone tell me the logistics of using oxygen

> on a road

> > trip. If I have to carry enough oxygen E-tanks to get m through

> a week

> > road trip, not only would I not have enough room for luggage, but

> we would

> > be a "rolling bomb "if we got in an accident. I can use a

> portable oxygen

> > concentrator riding in the car, eating or sitting in a motel

> room. I

> > still need the 6 liters on exertion and I'm not sure how to get

> this.

> > Has anyone had experience with this logistical nightmare.

> >

> >

> >

> > Thanks for listening and any help you can give me.

> >

> >

> >

> > Sue

> >

>

>

>

> No virus found in this incoming message.

> Checked by AVG.

> Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM

>

Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective.

[Guest guest]

Kathy...be sure and add your last name or initial when you sign off. There are other Kathy's here.

Do you move away from your kids because you "had to"?

When were you diagnosed and do you have a pulmonologist to contact when you get to TX? Where in TX are you going? We have members there and you may be lucky to be near one.

I know you are anxious for your new grandbaby. It's amazing how a grandchild can fill you with love when you first hold her/him. I was surprised how much love I felt for my first grandbaby!

Welcome to our group. Sorry our disease brings us together but you will be glad to be here with us!

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

Re: Re: A newbie with questions

Sue, Welcome newbie..I also have NSIP..I was DX in 8/05. I've been on Prednisone since DX...going from 40mg to now 12.5.Weight loss has always been an issue and I find that I just have to keep moving and try to eat less. I have stayed close to the weight I was at DX actually lost a few due to moving from a two story to a ranch..more walking in the house with no excuses about going up steps to different parts of the house.I also now getting more activity with a new grand daughter.. 4 weeks today!. I'm 64, married for 42 years, 3 grown married kids and two grand daughters.Anyway, ask anything..someone here will get the answers!!!!

Z fibriotic NSIP/o5/PA

And “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

lsmith7892006 wrote:

Hi Sue -I also have NSIP w/PF dx 12/2006. You might check with your O2 provider to see if there is a carrier at your destination that can provide a concentrator. Apria does not have a good national reputation but I have heard of them doing this.I traveled in January from Texas to Alabama and you are right - it is a logical nightmare but very doable.Good luck in your journey. S, Lubbock, TXNSIP w/PF 12/2006, Celiac, type 2 diab>> Hello everyone: I just found this group and I'm hoping to get some> answers to questions.> > I am 62 and was diagnosed in 9/07 with NSIP - a form of> pulmonary fibrosis. I ignored my shortness of breath symptoms until I had> 2 really bad respiratory infections and then one test led to another. I> had a lung biopsy in Sept. and since that time have become dependent on> oxygen-in short I am convinced this biopsy made my condition worse.> > > > I am currently on 3 L of O2 sitting and 6 exerting. I am> about 100 lbs overweight and I've been told that I need to lose weight> in order to be eligible for a lung transplant and also losing weight would> help my breathing. Having always been overweight to varying degrees all my> life, in my wildest dreams, I will never be able to lose that amount of wt.> I have been put on Prednisone (20 mg to start and now at 5) and Cellcept,> both are immunosuppressants.> > > > I was "approved" for a banding procedure or gastric bypass> before this diagnosis and that is probably the only way I can lose that> amout of weight. My pulmonary doc says to try to lose the wt first and> then if that doesn't work go for the least invasive surgery. Has anyone> else faced this?> > > > Can someone tell me the logistics of using oxygen on a road> trip. If I have to carry enough oxygen E-tanks to get m through a week> road trip, not only would I not have enough room for luggage, but we would> be a "rolling bomb "if we got in an accident. I can use a portable oxygen> concentrator riding in the car, eating or sitting in a motel room. I> still need the 6 liters on exertion and I'm not sure how to get this.> Has anyone had experience with this logistical nightmare.> > > > Thanks for listening and any help you can give me.> > > > Sue>

No virus found in this incoming message.

Checked by AVG. Version: 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008 8:10 AM

[Guest guest]

Kathy and other newbies, Your e-mail has a signature and you can put

all your info. there and it will

post when you send a post. Be sure to check the bottom where it says

place signature on top of quoted text.

It makes it easier to keep up.

Love and Prayers, Peggy

Florida, ipf 6/04

Worry looks around.

Sorry looks back,

Faith looks up.

Kathy...be sure and add your last name or initial when you sign off.

There are other Kathy's here.

Do you move away from your kids because you " had to " ?

When were you diagnosed and do you have a pulmonologist to contact

when you get to TX? Where in TX are you going? We have members there

and you may be lucky to be near one.

I know you are anxious for your new grandbaby. It's amazing how a

grandchild can fill you with love when you first hold her/him. I was

surprised how much love I felt for my first grandbaby!

Welcome to our group. Sorry our disease brings us together but you

will be glad to be here with us!

Mama-Sher, age 69. IPF 3-06, OR.

Don't fret about tomorrow, God is already there!

Re: Re: A newbie with questions

Sue, Welcome newbie..I also have NSIP..I was DX in 8/05. I've been on

Prednisone since DX...going from 40mg to now 12.5.

Weight loss has always been an issue and I find that I just have to

keep moving and try to eat less. I have stayed close to the weight

I was at DX

actually lost a few due to moving from a two story to a

ranch..more walking in the house with no excuses about going up steps to

different parts of the house.I also now getting more activity with a

new grand daughter.. 4 weeks today!

.. I'm 64, married for 42 years, 3 grown married kids and two grand

daughters.

Anyway, ask anything..someone here will get the answers!!!!

Z fibriotic NSIP/o5/PAAnd “mild” PH/10/07 and Reynaud’s too!!

No, NSIP was not self-inflicted…I never smoked!

Potter, reader,carousel lover and MomMom to Darah

and Sara

“I’m gonna be iron like a lion in Zion” Bob Marley

lsmith7892006 wrote:

>

> Hi Sue -

> I also have NSIP w/PF dx 12/2006.

> You might check with your O2 provider to see if there is a carrier

> at your destination that can provide a concentrator. Apria does not

> have a good national reputation but I have heard of them doing this.

>

> I traveled in January from Texas to Alabama and you are right - it

> is a logical nightmare but very doable.

>

> Good luck in your journey.

>

> S, Lubbock, TX

> NSIP w/PF 12/2006, Celiac, type 2 diab

>

>

> >

> > Hello everyone: I just found this group and I'm hoping to get

> some

> > answers to questions.

> >

> > I am 62 and was diagnosed in 9/07 with NSIP - a

> form of

> > pulmonary fibrosis. I ignored my shortness of breath symptoms

> until I had

> > 2 really bad respiratory infections and then one test led to

> another. I

> > had a lung biopsy in Sept. and since that time have become

> dependent on

> > oxygen-in short I am convinced this biopsy made my condition

> worse.

> >

> >

> >

> > I am currently on 3 L of O2 sitting and 6

> exerting. I am

> > about 100 lbs overweight and I've been told that I need to

> lose weight

> > in order to be eligible for a lung transplant and also losing

> weight would

> > help my breathing. Having always been overweight to varying

> degrees all my

> > life, in my wildest dreams, I will never be able to lose that

> amount of wt.

> > I have been put on Prednisone (20 mg to start and now at 5) and

> Cellcept,

> > both are immunosuppressants.

> >

> >

> >

> > I was " approved " for a banding procedure or

> gastric bypass

> > before this diagnosis and that is probably the only way I can

> lose that

> > amout of weight. My pulmonary doc says to try to lose the wt

> first and

> > then if that doesn't work go for the least invasive surgery.

> Has anyone

> > else faced this?

> >

> >

> >

> > Can someone tell me the logistics of using oxygen

> on a road

> > trip. If I have to carry enough oxygen E-tanks to get m through

> a week

> > road trip, not only would I not have enough room for luggage, but

> we would

> > be a " rolling bomb " if we got in an accident. I can use a

> portable oxygen

> > concentrator riding in the car, eating or sitting in a motel

> room. I

> > still need the 6 liters on exertion and I'm not sure how to get

> this.

> > Has anyone had experience with this logistical nightmare.

> >

> >

> >

> > Thanks for listening and any help you can give me.

> >

> >

> >

> > Sue

> >

>

>

> No virus found in this incoming message. Checked by AVG. Version:

> 7.5.519 / Virus Database: 269.21.7/1333 - Release Date: 3/18/2008

> 8:10 AM