Re: Recently diagnosed

[Guest guest]

Thank you for the information on the data base. Two quick questions: I had a pneumonia shot. Does that slow the progress of IPF? Is there a recommended diet? My wife is more into vitamins than I am but I do take several. Ken

To: Breathe-Support Sent: Monday, February 2, 2009 6:12:42 PMSubject: Re: Re: Recently diagnosedHi Ken, No I didn't get anything. But if you have any questions feel free to contact me anytime. In case you didn't know it there is a data base with a contact list in it. Some of us call each other and chit chat. And it's ok to do that if you would like to contact anyone on the list.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi Peggy!

I wrote a couple of responses to your encouragment but I'm not sure they made it to you - Please let me know.

A friend,

Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 2:36:46 PMSubject: Re: Re: Recently diagnosedKen, That is one

of the signs of low oxygen. Do you have an oximeter? Be careful your body, brain and heart really need a lot of the stuff.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Dear Marcia,Thank you very much for taking the time to share. It is helping me come to a dicision. I have a call into my doctor right now and am waiting to hear from him.I am thinking that mine is progressing fairly quickly. Do you or any you know with IPF have joint and muscle pain as part of the symptoms?Thank again!KenPS I just heard from my dr. and he said until further testing that I should not fly. I have further testing on March 16th.>> Ken, Beth gave you very good advice. I second it, check with the doctor first and you may need to have oxygen available. I live at sea level and my daughter is in Reno NV, at around 4500 or 4900 elevation, depending on who you are talking to. I no doubt had IPF on my first trip there, but had not been diagnosed yet, and I was so very tired and when we stopped for lunch on the way there,around 7000 ft elevation, I

nearly staggered and felt dizzy. I thought it was just because I was stiff from riding so long. I had no clue at the time. > The next trip I hand been diagnosed and I was on 02 at 2 lt and I still felt so tired. > The next trip I was still on 02 at 2 lt but I had a oximeter that would give me my

oxygen sats, and I found that where at home I didn't need any oxygen while sitting, I needed at least 1 lt there, and for walking I needed more than double than I used at home. Using the right oxygen made such a difference. it was a much more enjoyable trip. > My daughter's company moved up there. she said several people (people without lung problems) had a hard time aclimating to the elevation. Some even were hospitalized. So it would be a good idea to check it out. Marcia>

[Guest guest]

Ken,

The pneumonia vaccine isn't going to do anything to slow down the progress of the IPF. It just helps to protect you against pneumonia. Since any type of respiratory infection is potentially catastrophic for us it is in general highly recommended that we get the vaccine.

As far as vitamins, I haven't heard of anything that's specifically beneficial. I'm currently working with a nutritionist at Duke and she's helping me identify foods that prevent inflammation. That could in theory be helpful for me because inflammation plays a part in both my lung disease and the auto immune disease I have. I'm just learning though. When I know more and feel more confident about it I'll be happy to share what I'm learning with anyone who's interested.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, February 4, 2009 9:15:05 PMSubject: Re: Re: Recently diagnosed

Thank you for the information on the data base. Two quick questions: I had a pneumonia shot. Does that slow the progress of IPF? Is there a recommended diet? My wife is more into vitamins than I am but I do take several. Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 6:12:42 PMSubject: Re: Re: Recently diagnosedHi Ken, No I didn't get anything. But if you have any questions feel free to contact me anytime. In case you didn't know it there is a data base with a contact list in it. Some of us call each other and chit chat. And it's ok to do that if you would like to contact anyone on the list.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi Peggy!

I wrote a couple of responses to your encouragment but I'm not sure they made it to you - Please let me know.

A friend,

Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 2:36:46 PMSubject: Re: Re: Recently diagnosedKen, That is one of the signs of low oxygen. Do you have an oximeter? Be careful your body, brain and heart really need a lot of the stuff.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Dear Marcia,Thank you very much for taking the time to share. It is helping me come to a dicision. I have a call into my doctor right now and am waiting to hear from him.I am thinking that mine is progressing fairly quickly. Do you or any you know with IPF have joint and muscle pain as part of the symptoms?Thank again!KenPS I just heard from my dr. and he said until further testing that I should not fly. I have further testing on March 16th.>> Ken, Beth gave you very good advice. I second it, check with the doctor first and you may need to have oxygen available. I live at sea level and my daughter is in Reno NV, at around 4500 or 4900 elevation, depending on who you are talking to. I no doubt had IPF on my first trip there, but had not been diagnosed yet, and I was so very tired and when we stopped for lunch on the way there,around 7000 ft elevation, I nearly staggered and felt dizzy. I thought it was

just because I was stiff from riding so long. I had no clue at the time. > The next trip I hand been diagnosed and I was on 02 at 2 lt and I still felt so tired. > The next trip I was still on 02 at 2 lt but I had a oximeter that would give me my oxygen sats, and I found that where at home I didn't need any oxygen while sitting, I needed at least 1 lt there, and for walking I needed more than double than I used at home. Using the right oxygen made such a difference. it was a much more enjoyable trip. > My daughter's company moved up there. she said several people (people without lung problems) had a hard time aclimating to the elevation. Some even were hospitalized. So it would be a good idea to check it out. Marcia>

[Guest guest]

Ken,

The pneumonia vaccine isn't going to do anything to slow down the progress of the IPF. It just helps to protect you against pneumonia. Since any type of respiratory infection is potentially catastrophic for us it is in general highly recommended that we get the vaccine.

As far as vitamins, I haven't heard of anything that's specifically beneficial. I'm currently working with a nutritionist at Duke and she's helping me identify foods that prevent inflammation. That could in theory be helpful for me because inflammation plays a part in both my lung disease and the auto immune disease I have. I'm just learning though. When I know more and feel more confident about it I'll be happy to share what I'm learning with anyone who's interested.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, February 4, 2009 9:15:05 PMSubject: Re: Re: Recently diagnosed

Thank you for the information on the data base. Two quick questions: I had a pneumonia shot. Does that slow the progress of IPF? Is there a recommended diet? My wife is more into vitamins than I am but I do take several. Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 6:12:42 PMSubject: Re: Re: Recently diagnosedHi Ken, No I didn't get anything. But if you have any questions feel free to contact me anytime. In case you didn't know it there is a data base with a contact list in it. Some of us call each other and chit chat. And it's ok to do that if you would like to contact anyone on the list.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi Peggy!

I wrote a couple of responses to your encouragment but I'm not sure they made it to you - Please let me know.

A friend,

Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 2:36:46 PMSubject: Re: Re: Recently diagnosedKen, That is one of the signs of low oxygen. Do you have an oximeter? Be careful your body, brain and heart really need a lot of the stuff.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Dear Marcia,Thank you very much for taking the time to share. It is helping me come to a dicision. I have a call into my doctor right now and am waiting to hear from him.I am thinking that mine is progressing fairly quickly. Do you or any you know with IPF have joint and muscle pain as part of the symptoms?Thank again!KenPS I just heard from my dr. and he said until further testing that I should not fly. I have further testing on March 16th.>> Ken, Beth gave you very good advice. I second it, check with the doctor first and you may need to have oxygen available. I live at sea level and my daughter is in Reno NV, at around 4500 or 4900 elevation, depending on who you are talking to. I no doubt had IPF on my first trip there, but had not been diagnosed yet, and I was so very tired and when we stopped for lunch on the way there,around 7000 ft elevation, I nearly staggered and felt dizzy. I thought it was

just because I was stiff from riding so long. I had no clue at the time. > The next trip I hand been diagnosed and I was on 02 at 2 lt and I still felt so tired. > The next trip I was still on 02 at 2 lt but I had a oximeter that would give me my oxygen sats, and I found that where at home I didn't need any oxygen while sitting, I needed at least 1 lt there, and for walking I needed more than double than I used at home. Using the right oxygen made such a difference. it was a much more enjoyable trip. > My daughter's company moved up there. she said several people (people without lung problems) had a hard time aclimating to the elevation. Some even were hospitalized. So it would be a good idea to check it out. Marcia>

[Guest guest]

Ken

I'm going to start by giving you a bit of a wild yes and no.

Technically, a pneumonia shot does nothing toward the progress of IPF.

However, while we can't directly address the disease, we can address

complications and adverse events. Pneumonia is obviously very tough on

us. Many PF'ers die from pneumonia and complications from it. Our lungs

are already weak and it becomes especially danger. And, thats what we

all can do. Avoid germs. Avoid sick people. Get pneumonia vaccine and

flu vaccines. Get to doctor at first sign of illness. Treat every

illness seriously. By doing that we extend our lives with PF. We get

every possible mile out of our lungs we can.

As to diet, there are really no IPF specific diets but generally that

which would be considered healthy if you didn't have IPF is appropriate.

Now, with lungs that are weak, every pound you gain is more difficult to

carry. Same with exercise. The more strength you have the better you

function with the disease. In addition overeating at a specific meal

impacts breathing on a very short term basis.

When one has PF, everything they can do to take care of their bodies

ultimately is good for them. It may not address the disease but it

minimizes complications and it enhances living with the disease.

> >

> > Ken, Beth gave you very good advice. I second it, check

> with the doctor first and you may need to have oxygen available. I

> live at sea level and my daughter is in Reno NV, at around 4500 or

> 4900 elevation, depending on who you are talking to. I no doubt had

> IPF on my first trip there, but had not been diagnosed yet, and I

> was so very tired and when we stopped for lunch on the way

> there,around 7000 ft elevation, I nearly staggered and felt dizzy.

> I thought it was just because I was stiff from riding so long. I had

> no clue at the time.

> > The next trip I hand been diagnosed and I was on 02 at 2 lt and I

> still felt so tired.

> > The next trip I was still on 02 at 2 lt but I had a oximeter that

> would give me my oxygen sats, and I found that where at home I didn't

> need any oxygen while sitting, I needed at least 1 lt there, and for

> walking I needed more than double than I used at home. Using the

> right oxygen made such a difference.. it was a much more enjoyable

> trip.

> > My daughter's company moved up there. she said several

> people (people without lung problems) had a hard time aclimating to

> the elevation. Some even were hospitalized. So it would be a good

> idea to check it out. Marcia

> >

>

[Guest guest]

Ken

I'm going to start by giving you a bit of a wild yes and no.

Technically, a pneumonia shot does nothing toward the progress of IPF.

However, while we can't directly address the disease, we can address

complications and adverse events. Pneumonia is obviously very tough on

us. Many PF'ers die from pneumonia and complications from it. Our lungs

are already weak and it becomes especially danger. And, thats what we

all can do. Avoid germs. Avoid sick people. Get pneumonia vaccine and

flu vaccines. Get to doctor at first sign of illness. Treat every

illness seriously. By doing that we extend our lives with PF. We get

every possible mile out of our lungs we can.

As to diet, there are really no IPF specific diets but generally that

which would be considered healthy if you didn't have IPF is appropriate.

Now, with lungs that are weak, every pound you gain is more difficult to

carry. Same with exercise. The more strength you have the better you

function with the disease. In addition overeating at a specific meal

impacts breathing on a very short term basis.

When one has PF, everything they can do to take care of their bodies

ultimately is good for them. It may not address the disease but it

minimizes complications and it enhances living with the disease.

> >

> > Ken, Beth gave you very good advice. I second it, check

> with the doctor first and you may need to have oxygen available. I

> live at sea level and my daughter is in Reno NV, at around 4500 or

> 4900 elevation, depending on who you are talking to. I no doubt had

> IPF on my first trip there, but had not been diagnosed yet, and I

> was so very tired and when we stopped for lunch on the way

> there,around 7000 ft elevation, I nearly staggered and felt dizzy.

> I thought it was just because I was stiff from riding so long. I had

> no clue at the time.

> > The next trip I hand been diagnosed and I was on 02 at 2 lt and I

> still felt so tired.

> > The next trip I was still on 02 at 2 lt but I had a oximeter that

> would give me my oxygen sats, and I found that where at home I didn't

> need any oxygen while sitting, I needed at least 1 lt there, and for

> walking I needed more than double than I used at home. Using the

> right oxygen made such a difference.. it was a much more enjoyable

> trip.

> > My daughter's company moved up there. she said several

> people (people without lung problems) had a hard time aclimating to

> the elevation. Some even were hospitalized. So it would be a good

> idea to check it out. Marcia

> >

>

[Guest guest]

Ken

I'm going to start by giving you a bit of a wild yes and no.

Technically, a pneumonia shot does nothing toward the progress of IPF.

However, while we can't directly address the disease, we can address

complications and adverse events. Pneumonia is obviously very tough on

us. Many PF'ers die from pneumonia and complications from it. Our lungs

are already weak and it becomes especially danger. And, thats what we

all can do. Avoid germs. Avoid sick people. Get pneumonia vaccine and

flu vaccines. Get to doctor at first sign of illness. Treat every

illness seriously. By doing that we extend our lives with PF. We get

every possible mile out of our lungs we can.

As to diet, there are really no IPF specific diets but generally that

which would be considered healthy if you didn't have IPF is appropriate.

Now, with lungs that are weak, every pound you gain is more difficult to

carry. Same with exercise. The more strength you have the better you

function with the disease. In addition overeating at a specific meal

impacts breathing on a very short term basis.

When one has PF, everything they can do to take care of their bodies

ultimately is good for them. It may not address the disease but it

minimizes complications and it enhances living with the disease.

> >

> > Ken, Beth gave you very good advice. I second it, check

> with the doctor first and you may need to have oxygen available. I

> live at sea level and my daughter is in Reno NV, at around 4500 or

> 4900 elevation, depending on who you are talking to. I no doubt had

> IPF on my first trip there, but had not been diagnosed yet, and I

> was so very tired and when we stopped for lunch on the way

> there,around 7000 ft elevation, I nearly staggered and felt dizzy.

> I thought it was just because I was stiff from riding so long. I had

> no clue at the time.

> > The next trip I hand been diagnosed and I was on 02 at 2 lt and I

> still felt so tired.

> > The next trip I was still on 02 at 2 lt but I had a oximeter that

> would give me my oxygen sats, and I found that where at home I didn't

> need any oxygen while sitting, I needed at least 1 lt there, and for

> walking I needed more than double than I used at home. Using the

> right oxygen made such a difference.. it was a much more enjoyable

> trip.

> > My daughter's company moved up there. she said several

> people (people without lung problems) had a hard time aclimating to

> the elevation. Some even were hospitalized. So it would be a good

> idea to check it out. Marcia

> >

>

[Guest guest]

Beth,

The information you shared is very valuable - THANK YOU! Whatever

you find out will be greatly welcomed!

I'm a guy and I keep thinking I can fix this. Intellectually I guess

I have accepted IPF though my emotions have NOT. I have an

exceptionally close family but still I haven't even felt like

crying. I asked the Dr. three times in one visit if my chart

actually said the words " Pulmonary Fibrosis " and each time he said

yes. He was very patient with me. He is my primary care physician

who said not to fly right now. Still my heart says they made a

mistake. My dear wife is having the same response.

Again, thank you, Beth!

Ken

> >

> > Ken,  Beth gave you very good advice.  I second it,  check 

> with the doctor first and  you may need to have oxygen available. 

I 

> live at sea level and my daughter is in Reno NV, at around 4500 or 

> 4900 elevation, depending on who you are talking to.  I no doubt

had 

> IPF on my first trip  there, but had not been diagnosed yet, and I 

> was so very tired and when we stopped for lunch on the way 

> there,around 7000 ft elevation, I nearly staggered and felt

dizzy.   

> I thought it was just because I was stiff from riding so long. I

had 

> no clue at the time. 

> > The next trip I hand been diagnosed and I was on 02 at 2 lt and I 

> still felt so tired.  

> > The next trip I was still on 02 at 2 lt but I had a oximeter that 

> would give me my oxygen sats, and I found that where at home I

didn't 

> need any oxygen while sitting, I needed at least 1 lt there, and

for 

> walking I needed  more  than double than  I used at home.   Using

the 

> right oxygen made such a difference. it was a much more enjoyable 

> trip.  

> > My daughter's company moved up there.  she said several 

> people (people without lung problems) had a hard time aclimating to 

> the elevation.  Some even were hospitalized.  So it would be a good 

> idea to check it out.    Marcia

> >

>

[Guest guest]

Bruce,

Your email is worth filing! Thank you!

What prompted me to ask is I have a pretty severe cold (fever,

chills, congestion, cough) and wondered if my pneumonia shot was my

silver bullet? I hate to run to the Dr. lest he say " Here comes Ken

again " but I want to be wise too.

Again, Thank you much!

Ken

PS How are you doing, Bruce?

> > >

> > > Ken, Beth gave you very good advice. I second it, check

> > with the doctor first and you may need to have oxygen

available. I

> > live at sea level and my daughter is in Reno NV, at around 4500 or

> > 4900 elevation, depending on who you are talking to. I no doubt

had

> > IPF on my first trip there, but had not been diagnosed yet, and I

> > was so very tired and when we stopped for lunch on the way

> > there,around 7000 ft elevation, I nearly staggered and felt dizzy.

> > I thought it was just because I was stiff from riding so long. I

had

> > no clue at the time.

> > > The next trip I hand been diagnosed and I was on 02 at 2 lt and

I

> > still felt so tired.

> > > The next trip I was still on 02 at 2 lt but I had a oximeter

that

> > would give me my oxygen sats, and I found that where at home I

didn't

> > need any oxygen while sitting, I needed at least 1 lt there, and

for

> > walking I needed more than double than I used at home. Using

the

> > right oxygen made such a difference.. it was a much more enjoyable

> > trip.

> > > My daughter's company moved up there. she said several

> > people (people without lung problems) had a hard time aclimating

to

> > the elevation. Some even were hospitalized. So it would be a

good

> > idea to check it out. Marcia

> > >

> >

>

[Guest guest]

Hi Ken, We all need to get the flu and pneumonia shots. We need to stay away from all illnesses. Colds and even runny noses can be really tough on us. However we don't want to do anything to boost our immune systems because it is already working overtimetrying to heal our lungs.. This is a crazy disease. The best diet is just a good healthy one, fruits & veggies ... ME.. sweets. Really bad for me but I am just addicted. Oh well it is do as I say not as I do.. lol  If you are eating a good diet you don't need vitamins, as per my dr.  To each his own I guess. Somefeel better because they do. Take Care of you. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Thank you for the information on the data base.  Two quick questions:  I had a pneumonia shot.  Does that slow the progress of IPF?  Is there a recommended diet?  My wife is more into vitamins than I am but I do take several.  KenFrom: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support Sent: Monday, February 2, 2009 6:12:42 PMSubject: Re: Re: Recently diagnosedHi Ken, No I didn't get anything. But if you have any questions feel free to contact me anytime.In case you didn't know it there is a data base with a contact list in it. Some of us call each other and chit chat. And it's ok to do that if you would like to contact anyone on the list. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi Peggy! I wrote a couple of responses to your encouragment but I'm not sure they made it to you - Please let me know. A friend,KenFrom: Peggy <pac1773 (AT) cfl (DOT)  rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 2:36:46 PMSubject: Re: Re: Recently diagnosedKen, That is one of the signs of low oxygen.  Do you have an oximeter? Be careful your body, brain and heart really need a lot of the stuff. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Dear Marcia,Thank you very much for taking the time to share. It is helping me come to a dicision. I have a call into my doctor right now and am waiting to hear from him.I am thinking that mine is progressing fairly quickly. Do you or any you know with IPF have joint and muscle pain as part of the symptoms?Thank again!KenPS I just heard from my dr. and he said until further testing that I should not fly. I have further testing on March 16th.>> Ken,  Beth gave you very good advice.  I second it,  check with the doctor first and  you may need to have oxygen available.  I live at sea level and my daughter is in Reno NV, at around 4500 or 4900 elevation, depending on who you are talking to.  I no doubt had IPF on my first trip  there, but had not been diagnosed yet, and I was so very tired and when we stopped for lunch on the way there,around 7000 ft elevation, I nearly staggered and felt dizzy.   I thought it was just because I was stiff from riding so long. I had no clue at the time. > The next trip I hand been diagnosed and I was on 02 at 2 lt and I still felt so tired.  > The next trip I was still on 02 at 2 lt but I had a oximeter that would give me my oxygen sats, and I found that where at home I didn't need any oxygen while sitting, I needed at least 1 lt there, and for walking I needed  more  than double than  I used at home.   Using the right oxygen made such a difference. it was a much more enjoyable trip.  > My daughter's company moved up there.  she said several people (people without lung problems) had a hard time aclimating to the elevation.  Some even were hospitalized.  So it would be a good idea to check it out.    Marcia>

[Guest guest]

Ken

Run to the doctor. Get antibiotics and if not well after one round, go

another. There are no silver bullets. Infection is dangerous. There is

no such thing as a simple cold with PF. Your system is compromised. And,

if any doctor makes you feel like " here comes Ken again " the solution to

that is simple-a new doctor.

Please take care.

> > > >

> > > > Ken, Beth gave you very good advice. I second it, check

> > > with the doctor first and you may need to have oxygen

> available. I

> > > live at sea level and my daughter is in Reno NV, at around 4500 or

> > > 4900 elevation, depending on who you are talking to. I no doubt

> had

> > > IPF on my first trip there, but had not been diagnosed yet, and I

> > > was so very tired and when we stopped for lunch on the way

> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.

> > > I thought it was just because I was stiff from riding so long. I

> had

> > > no clue at the time.

> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and

> I

> > > still felt so tired.

> > > > The next trip I was still on 02 at 2 lt but I had a oximeter

> that

> > > would give me my oxygen sats, and I found that where at home I

> didn't

> > > need any oxygen while sitting, I needed at least 1 lt there, and

> for

> > > walking I needed more than double than I used at home. Using

> the

> > > right oxygen made such a difference.. it was a much more enjoyable

> > > trip.

> > > > My daughter's company moved up there. she said several

> > > people (people without lung problems) had a hard time aclimating

> to

> > > the elevation. Some even were hospitalized. So it would be a

> good

> > > idea to check it out. Marcia

> > > >

> > >

> >

>

[Guest guest]

Ken, I had a cold a couple weeks ago. wound up in the hosp. over night, Antibiotics IV.. all the good stuff.I was very blessed because it could have been so much worse. I have learned not to play around witheven a stuffy nose. Better safe than sorry. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  KenRun to the doctor. Get antibiotics and if not well after one round, goanother. There are no silver bullets. Infection is dangerous. There isno such thing as a simple cold with PF. Your system is compromised. And,if any doctor makes you feel like "here comes Ken again" the solution tothat is simple-a new doctor.Please take care.> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen> available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt> had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I> had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter> that> > > would give me my oxygen sats, and I found that where at home I> didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and> for> > > walking I needed more than double than I used at home. Using> the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating> to> > > the elevation. Some even were hospitalized. So it would be a> good> > > idea to check it out. Marcia> > > >> > >> >>

[Guest guest]

Thank you, Peggy! I have a doozer of a cold - no fun but I feel safe - at least for now. How are you doing?

To: Breathe-Support Sent: Wednesday, February 4, 2009 7:40:11 PMSubject: Re: Re: Recently diagnosedHi Ken, We all need to get the flu and pneumonia shots. We need to stay away from all illnesses. Colds and even runny noses can be really tough on us.

However we don't want to do anything to boost our immune systems because it is already working overtime

trying to heal our lungs.. This is a crazy disease.

The best diet is just a good healthy one, fruits & veggies ... ME.. sweets. Really bad for me but I am just

addicted. Oh well it is do as I say not as I do.. lol

If you are eating a good diet you don't need vitamins, as per my dr. To each his own I guess. Some

feel better because they do.

Take Care of you.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Thank you for the information on the data base. Two quick questions: I had a pneumonia shot. Does that slow the progress of IPF? Is there a recommended diet? My wife is more into vitamins than I am but I do take several. Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 6:12:42 PMSubject: Re: Re: Recently diagnosedHi Ken, No I

didn't get anything. But if you have any questions feel free to contact me anytime. In case you didn't know it there is a data base with a contact list in it. Some of us call each other and chit chat. And it's ok to do that if you would like to contact anyone on the list.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Hi Peggy!

I wrote a couple of responses to your encouragment but I'm not sure they made it to you - Please let me know.

A friend,

Ken

From: Peggy <pac1773 (AT) cfl (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 2:36:46 PMSubject: Re: Re: Recently diagnosedKen, That is one of the signs of low oxygen. Do you have an oximeter? Be careful your body, brain and heart really need a lot of the stuff.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

Dear Marcia,Thank you very much for taking the time to share. It is helping me come to a dicision. I have a call into my doctor right now and am waiting to hear from him.I am thinking that mine is progressing fairly quickly. Do you or any you know

with IPF have joint and muscle pain as part of the symptoms?Thank again!KenPS I just heard from my dr. and he said until further testing that I should not fly. I have further testing on March 16th.>> Ken, Beth gave you very good advice. I second it, check with the doctor first and you may need to have oxygen available. I live at sea level and my daughter is in Reno NV, at around 4500 or 4900 elevation, depending on who you

are talking to. I no doubt had IPF on my first trip there, but had not been diagnosed yet, and I was so very tired and when we stopped for lunch on the way there,around 7000 ft elevation, I nearly staggered and felt dizzy. I thought it was just because I was stiff from riding so long. I had no clue at the time. > The next trip I hand been diagnosed and I was on 02 at 2 lt and I still felt so tired. > The next trip I was still on 02 at 2 lt but I had a oximeter that would give me my oxygen sats, and I found that where at home I didn't need any oxygen while sitting, I needed at least 1 lt there, and for walking I needed more than double than I used at home. Using the right oxygen made such a difference. it was a much more enjoyable trip. > My daughter's company moved up there. she said several people (people without lung problems) had a hard time aclimating to the elevation. Some even were hospitalized. So it would be a good idea to check it out. Marcia>

[Guest guest]

Thank you!!

To: Breathe-Support Sent: Wednesday, February 4, 2009 7:41:27 PMSubject: Re: Recently diagnosed

KenRun to the doctor. Get antibiotics and if not well after one round, goanother. There are no silver bullets. Infection is dangerous. There isno such thing as a simple cold with PF. Your system is compromised. And,if any doctor makes you feel like "here comes Ken again" the solution tothat is simple-a new doctor.Please take care.> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen> available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt> had> > > IPF on my first trip there, but had not been diagnosed yet, and I>

> > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I> had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter> that> > > would give me my oxygen sats, and I found that where at home I> didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and> for> > > walking I needed more than double than I used at home. Using> the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up

there. she said several> > > people (people without lung problems) had a hard time aclimating> to> > > the elevation. Some even were hospitalized. So it would be a> good> > > idea to check it out. Marcia> > > >> > >> >>

[Guest guest]

Wow! I hear you! Ken

To: Breathe-Support Sent: Wednesday, February 4, 2009 7:49:15 PMSubject: Re: Re: Recently diagnosedKen, I had a cold a couple weeks ago. wound up in the hosp. over night, Antibiotics IV.. all the good stuff.

I was very blessed because it could have been so much worse. I have learned not to play around with

even a stuffy nose. Better safe than sorry.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

KenRun to the doctor. Get antibiotics and if not well after one round, goanother. There are no silver bullets. Infection is dangerous. There isno such thing as a simple cold with PF. Your system is compromised. And,if any doctor makes you feel like "here comes Ken again" the solution tothat is simple-a new doctor.Please take care.> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen> available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt> had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on

the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I> had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and> I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter> that> > > would give me my oxygen sats, and I found that where at home I> didn't> > > need any oxygen while sitting, I needed at least 1 lt

there, and> for> > > walking I needed more than double than I used at home. Using> the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating> to> > > the elevation. Some even were hospitalized. So it would be a> good> > > idea to check it out. Marcia> > > >> > >> >>

[Guest guest]

Ken, Better the doctor say "Here comes Ken again." Than admitting you to the hospital and saying, "Why didn't you come in sooner?"With an infection or a cold, since our immune system is in the toilet, we can't let it get a hold on us. Best to take imediate action. Take care. Marcia

[Guest guest]

Ken

You are not alone in the disbelief or the I can fix it thought

process. I was raised to believe if it is broke - don't get upset

over it. Just " fix " it. Unfortunately, this is one thing that can't

be " fixed " . It is really hard to wrap your mind around that reality

but you have to keep trying to. It still does not hurt to constantly

look for ways to compensate for it or as my doctor and I say make

some adjustments to ease the daily life with it.

Many people here have found things that ease portions of their daily

living for themselves. Somethings might work for you and others

might now. Just remember the rules - if it means meds - even over

the counter, herbal or vitamins - check with your doctor BEFORE

trying them. That was the first rule my doctor told me on my first

visit to him. Never take anything before making sure that it will

have no impact on you with the meds prescribed. Certain foods might

impact the meds you take like I cannot have grapefruit - which was

not a great loss for me since I hate it anyway.

Jean

> > >

> > > Ken,  Beth gave you very good advice.  I second it,  check 

> > with the doctor first and  you may need to have oxygen

available. 

> I 

> > live at sea level and my daughter is in Reno NV, at around 4500

or 

> > 4900 elevation, depending on who you are talking to.  I no doubt

> had 

> > IPF on my first trip  there, but had not been diagnosed yet, and

I 

> > was so very tired and when we stopped for lunch on the way 

> > there,around 7000 ft elevation, I nearly staggered and felt

> dizzy.   

> > I thought it was just because I was stiff from riding so long. I

> had 

> > no clue at the time. 

> > > The next trip I hand been diagnosed and I was on 02 at 2 lt and

I 

> > still felt so tired.  

> > > The next trip I was still on 02 at 2 lt but I had a

oximeter that 

> > would give me my oxygen sats, and I found that where at home I

> didn't 

> > need any oxygen while sitting, I needed at least 1 lt there, and

> for 

> > walking I needed  more  than double than  I used at home.   Using

> the 

> > right oxygen made such a difference. it was a much more enjoyable 

> > trip.  

> > > My daughter's company moved up there.  she said several 

> > people (people without lung problems) had a hard time aclimating

to 

> > the elevation.  Some even were hospitalized.  So it would be a

good 

> > idea to check it out.    Marcia

> > >

> >

>

[Guest guest]

Never wait to go to the doc for something to do with congestion and

fever. We all have tried it not wanting to cry wolf too often and we

all have ended up in worse shape than we had to. When you have a

disease like this it is better to cry wolf once in a while than to

put off treatment. My doctor has me on his list of get this person

in no matter what even if you have to overbook whenever she calls to

say something is wrong. I am sure that your doctor would have the

same type rule for you. What is a simple cold for others can become

life threatening to us overnight so let your doctor decide. He had

the medical degree, stethascope and prescription pad. Jean

> > > >

> > > > Ken, Beth gave you very good advice. I second it,

check

> > > with the doctor first and you may need to have oxygen

> available. I

> > > live at sea level and my daughter is in Reno NV, at around 4500

or

> > > 4900 elevation, depending on who you are talking to. I no

doubt

> had

> > > IPF on my first trip there, but had not been diagnosed yet,

and I

> > > was so very tired and when we stopped for lunch on the way

> > > there,around 7000 ft elevation, I nearly staggered and felt

dizzy.

> > > I thought it was just because I was stiff from riding so long.

I

> had

> > > no clue at the time.

> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt

and

> I

> > > still felt so tired.

> > > > The next trip I was still on 02 at 2 lt but I had a oximeter

> that

> > > would give me my oxygen sats, and I found that where at home I

> didn't

> > > need any oxygen while sitting, I needed at least 1 lt there,

and

> for

> > > walking I needed more than double than I used at home.

Using

> the

> > > right oxygen made such a difference.. it was a much more

enjoyable

> > > trip.

> > > > My daughter's company moved up there. she said several

> > > people (people without lung problems) had a hard time

aclimating

> to

> > > the elevation. Some even were hospitalized. So it would be a

> good

> > > idea to check it out. Marcia

> > > >

> > >

> >

>

[Guest guest]

Absolutely great advice...........

i already knew this.....we have spoken about it here in the past......which is why I can't explain why I totally ignored it last week. Probably overdosed on my "stupid-meds". Now I find myself in trouble. On Levoquin again, prednisone back up to 40mg (from 10mg) and I have to go in everyday for an IV steroid. The doc is going to start an injectable antibiotic when I see him in an hour. I haven't been able to lay flat to sleep for 4 nights now......wake up coughing....bad......coughing spells cause sats to drop to record lows.....68% yesterday....vision starts going black, pass out.......I did everything wrong. Wife had bronchitis, I couldn't find my mask so I blew it off. My docs do as Jeane describes....get me in NOW......no excuse !!!!!

BE SMARTER THAN ME !!!!!!!!

jim

Subject: Re: Recently diagnosedTo: Breathe-Support Date: Thursday, February 5, 2009, 1:30 AM

Never wait to go to the doc for something to do with congestion and fever. We all have tried it not wanting to cry wolf too often and we all have ended up in worse shape than we had to. When you have a disease like this it is better to cry wolf once in a while than to put off treatment. My doctor has me on his list of get this person in no matter what even if you have to overbook whenever she calls to say something is wrong. I am sure that your doctor would have the same type rule for you. What is a simple cold for others can become life threatening to us overnight so let your doctor decide. He had the medical degree, stethascope and prescription pad. Jean> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen > available. I> > > live at sea level and my daughter is in Reno NV, at

around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt > had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I > had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and > I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter > that> > > would give me my oxygen sats, and I found that where at home I > didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and > for> > >

walking I needed more than double than I used at home. Using > the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating > to> > > the elevation. Some even were hospitalized. So it would be a > good> > > idea to check it out. Marcia> > > >> > >> >>

[Guest guest]

Jim

Please, please, now that the " stupid-meds " have worn off do everything

possible to fight this and if that means hospital head there. If you

feel any worsening during the night, call an ambulance and go or

whatever it takes. Thanks for posting because hopefully many others are

reading it. But, in your case just now that you and your doctor are

fighting it, if it takes any negative turn or is failing to respond

elevate the battle.

Sorry to see you so sick and glad to see full out war waged on your

illness. Will be thinking of you until you can report some improvement

to us.

> > > > >

> > > > > Ken, Beth gave you very good advice. I second it,

> check

> > > > with the doctor first and you may need to have oxygen

> > available. I

> > > > live at sea level and my daughter is in Reno NV, at around 4500

> or

> > > > 4900 elevation, depending on who you are talking to. I no

> doubt

> > had

> > > > IPF on my first trip there, but had not been diagnosed yet,

> and I

> > > > was so very tired and when we stopped for lunch on the way

> > > > there,around 7000 ft elevation, I nearly staggered and felt

> dizzy.

> > > > I thought it was just because I was stiff from riding so long.

> I

> > had

> > > > no clue at the time.

> > > > > The next trip I hand been diagnosed and I was on 02 at 2 lt

> and

> > I

> > > > still felt so tired.

> > > > > The next trip I was still on 02 at 2 lt but I had a oximeter

> > that

> > > > would give me my oxygen sats, and I found that where at home I

> > didn't

> > > > need any oxygen while sitting, I needed at least 1 lt there,

> and

> > for

> > > > walking I needed more than double than I used at home.

> Using

> > the

> > > > right oxygen made such a difference.. it was a much more

> enjoyable

> > > > trip.

> > > > > My daughter's company moved up there. she said several

> > > > people (people without lung problems) had a hard time

> aclimating

> > to

> > > > the elevation. Some even were hospitalized. So it would be a

> > good

> > > > idea to check it out. Marcia

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Ken... I've been fairly stable now for 3 years...in March...Nearly every time I see my dr and get the "stable" report I ask him 'if I really have PF. Maybe I don't, maybe it's something else'.. His answer is always the same, "Yes, you definitely have PF".

We here on the board know how you feel...

I had BIG TIME DENIAL at first and I guess there is still some lurking about.

God Bless you and yours.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Recently diagnosed

Beth,The information you shared is very valuable - THANK YOU! Whatever you find out will be greatly welcomed! I'm a guy and I keep thinking I can fix this. Intellectually I guess I have accepted IPF though my emotions have NOT. I have an exceptionally close family but still I haven't even felt like crying. I asked the Dr. three times in one visit if my chart actually said the words "Pulmonary Fibrosis" and each time he said yes. He was very patient with me. He is my primary care physician who said not to fly right now. Still my heart says they made a mistake. My dear wife is having the same response.Again, thank you, Beth!Ken> >> > Ken, Beth gave you very good advice. I second it, check > with the doctor first and you may need to have oxygen available. I > live at sea level and my daughter is in Reno NV, at around 4500 or > 4900 elevation, depending on who you are talking to. I no doubt had > IPF on my first trip there, but had not been diagnosed yet, and I > was so very tired and when we stopped for lunch on the way > there,around 7000 ft elevation, I nearly staggered and felt dizzy. > I thought it was just because I was stiff from riding so long. I had > no clue at the time. > > The next trip I hand been diagnosed and I was on 02 at 2 lt and I > still felt so tired. > > The next trip I was still on 02 at 2 lt but I had a oximeter that > would give me my oxygen sats, and I found that where at home I didn't > need any oxygen while sitting, I needed at least 1 lt there, and for > walking I needed more than double than I used at home. Using the > right oxygen made such a difference. it was a much more enjoyable > trip. > > My daughter's company moved up there. she said several > people (people without lung problems) had a hard time aclimating to > the elevation. Some even were hospitalized. So it would be a good > idea to check it out. Marcia> >>

[Guest guest]

Jim...you know I'm a-wishin' and a-hopein'

you will quickly recover!

None of this was done intentionally and now you'll have to be patient as you recover. Please be careful.

Prayers are always with you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Recently diagnosedTo: Breathe-Support Date: Thursday, February 5, 2009, 1:30 AM

Never wait to go to the doc for something to do with congestion and fever. We all have tried it not wanting to cry wolf too often and we all have ended up in worse shape than we had to. When you have a disease like this it is better to cry wolf once in a while than to put off treatment. My doctor has me on his list of get this person in no matter what even if you have to overbook whenever she calls to say something is wrong. I am sure that your doctor would have the same type rule for you. What is a simple cold for others can become life threatening to us overnight so let your doctor decide. He had the medical degree, stethascope and prescription pad. Jean> > > >> > > > Ken, Beth gave you very good advice. I second it, check> > > with the doctor first and you may need to have oxygen > available. I> > > live at sea level and my daughter is in Reno NV, at around 4500 or> > > 4900 elevation, depending on who you are talking to. I no doubt > had> > > IPF on my first trip there, but had not been diagnosed yet, and I> > > was so very tired and when we stopped for lunch on the way> > > there,around 7000 ft elevation, I nearly staggered and felt dizzy.> > > I thought it was just because I was stiff from riding so long. I > had> > > no clue at the time.> > > > The next trip I hand been diagnosed and I was on 02 at 2 lt and > I> > > still felt so tired.> > > > The next trip I was still on 02 at 2 lt but I had a oximeter > that> > > would give me my oxygen sats, and I found that where at home I > didn't> > > need any oxygen while sitting, I needed at least 1 lt there, and > for> > > walking I needed more than double than I used at home. Using > the> > > right oxygen made such a difference.. it was a much more enjoyable> > > trip.> > > > My daughter's company moved up there. she said several> > > people (people without lung problems) had a hard time aclimating > to> > > the elevation. Some even were hospitalized. So it would be a > good> > > idea to check it out. Marcia> > > >> > >> >>

[Guest guest]

Sher re: Denial

Nothing wrong with a certain amount of denial or what I'd prefer to call

compartmentalizing.

If we deny to the point of failing to do what is best for us, failing to

protect ourselves, and even planning for the inevitable, then we're

hurting ourselves and/or others. However, if all we're doing is removing

the thoughts from our day to day living by compartmentalizing them, then

thats good. It means we've accepted but not letting the thoughts

dominate and control us.

I fully know my condition, normal progression and steps from this point,

the ultimate outcome. I know what I must do to protect myself. But,

then, I choose to live as full a life as possible. I deny oxygen being a

limitation. I deny having less stamina being a limitation-I simply say I

deserve at this point to rest a bit more. I deny needing more rest being

a limitation-I simply say I don't have to live by schedule and avoiding

early morning appointments as a privilege I've earned.

I continue to the best of my ability to make decisions that help me

enjoy life the most I can while recognizing accomodations to the disease

that will need to be made. I focus on what I want and how I want to

spend the time I have.

Am I denying the fact I'm getting closer to death? Yes, and no. I

recognize my mortality. But I deny the fact that I'm dying. I'm living

until that moment I die. I'm living whether its today while I can still

function pretty well or tomorrow when I need more assistance. I see

Vicky and Lou and they appear to me to be quite alive. Humor still

comes through. Gentleness and love. Maybe part is morphine induced but

so be it. Another privilege...we get to use strong narcotics and have

legal highs. I don't make light of any of it. Maybe the thing I deny

most is that life is horrible because it isn't. Yes, the disease is a

monster. But it can either kill us when we physically die or it can take

the life from us at diagnosis. I choose to wait. When the doctor

pronounces me dead, I will be. Until then not.

Sher. Your denial today is much different than a year ago. You then were

denying a bit the need for oxygen. Today you're using it and doing more

things and denying that your life has to be bad. You're much more alive

today than when I first knew you. You know it won't always be this way

but just say " damnit " and proceed to the next project.

> > >

> > > Ken, Beth gave you very good advice. I second it, check

> > with the doctor first and you may need to have oxygen available.

> I

> > live at sea level and my daughter is in Reno NV, at around 4500 or

> > 4900 elevation, depending on who you are talking to. I no doubt

> had

> > IPF on my first trip there, but had not been diagnosed yet, and I

> > was so very tired and when we stopped for lunch on the way

> > there,around 7000 ft elevation, I nearly staggered and felt

> dizzy.

> > I thought it was just because I was stiff from riding so long. I

> had

> > no clue at the time.

> > > The next trip I hand been diagnosed and I was on 02 at 2 lt and

I

> > still felt so tired.

> > > The next trip I was still on 02 at 2 lt but I had a oximeter

that

> > would give me my oxygen sats, and I found that where at home I

> didn't

> > need any oxygen while sitting, I needed at least 1 lt there, and

> for

> > walking I needed more than double than I used at home. Using

> the

> > right oxygen made such a difference. it was a much more enjoyable

> > trip.

> > > My daughter's company moved up there. she said several

> > people (people without lung problems) had a hard time aclimating

to

> > the elevation. Some even were hospitalized. So it would be a

good

> > idea to check it out. Marcia

> > >

> >

>

[Guest guest]

I'm grinning out here in Oregon brother Bruce! I've not used "DAMNIT" in a long while. hahaaa.

Of course I agree with all you write and no, I don't have the denial about my pf any longer. I accept it, question it occasionally but live with it on a daily basis ok, in spite of sob.

I'm glad to have that O2 now. How I hated that cyl. over my shoulder at first!

I hated it when I could no longer do what I want to do or go as easily as I did.

This board has been a soft place to land...I've ranted and questioned more than most I think. I've been verbose (now I let you be verbose. Kidding here now, kidding.) Some times kinda obnoxious. I know now it's all part of learning to cope with a fatal illness that only the board is privy too.

You've played a big part in my accepting this disease and going on anyway.

Thanks.

I don't go like you do...but then I'm some years older and age/arthritis/fibromyalgia/other chronic health problems keep me closer to home. Nothing to do with pf. In a lot of ways pf is the easier to manage. Thus far.

I'm beginning to see how lucky I am and I thought I was burdened. I don't have to get out and work like so many here need and want to do. Our finances went down the toilet w/high medical but we have enough to live on. (Now Rxs are something else!) We have a comfy little apt...sure we miss our lovely home we had to sell. If I don't feel like doing anything one day, I don't do anything! How fortunate.

I see gratitude in you too Bruce and so many others.

God knows what He's doing, I think I'll let Him do it.

Hugs to you.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: Recently diagnosed

Sher re: DenialNothing wrong with a certain amount of denial or what I'd prefer to callcompartmentalizing.If we deny to the point of failing to do what is best for us, failing toprotect ourselves, and even planning for the inevitable, then we'rehurting ourselves and/or others. However, if all we're doing is removingthe thoughts from our day to day living by compartmentalizing them, thenthats good. It means we've accepted but not letting the thoughtsdominate and control us.I fully know my condition, normal progression and steps from this point,the ultimate outcome. I know what I must do to protect myself. But,then, I choose to live as full a life as possible. I deny oxygen being alimitation. I deny having less stamina being a limitation-I simply say Ideserve at this point to rest a bit more. I deny needing more rest beinga limitation-I simply say I don't have to live by schedule and avoidingearly morning appointments as a privilege I've earned.I continue to the best of my ability to make decisions that help meenjoy life the most I can while recognizing accomodations to the diseasethat will need to be made. I focus on what I want and how I want tospend the time I have.Am I denying the fact I'm getting closer to death? Yes, and no. Irecognize my mortality. But I deny the fact that I'm dying. I'm livinguntil that moment I die. I'm living whether its today while I can stillfunction pretty well or tomorrow when I need more assistance. I seeVicky and Lou and they appear to me to be quite alive. Humor stillcomes through. Gentleness and love. Maybe part is morphine induced butso be it. Another privilege...we get to use strong narcotics and havelegal highs. I don't make light of any of it. Maybe the thing I denymost is that life is horrible because it isn't. Yes, the disease is amonster. But it can either kill us when we physically die or it can takethe life from us at diagnosis. I choose to wait. When the doctorpronounces me dead, I will be. Until then not.Sher. Your denial today is much different than a year ago. You then weredenying a bit the need for oxygen. Today you're using it and doing morethings and denying that your life has to be bad. You're much more alivetoday than when I first knew you. You know it won't always be this waybut just say "damnit" and proceed to the next project.> > >> > > Ken, Beth gave you very good advice. I second it, check> > with the doctor first and you may need to have oxygen available.> I> > live at sea level and my daughter is in Reno NV, at around 4500 or> > 4900 elevation, depending on who you are talking to. I no doubt> had> > IPF on my first trip there, but had not been diagnosed yet, and I> > was so very tired and when we stopped for lunch on the way> > there,around 7000 ft elevation, I nearly staggered and felt> dizzy.> > I thought it was just because I was stiff from riding so long. I> had> > no clue at the time.> > > The next trip I hand been diagnosed and I was on 02 at 2 lt andI> > still felt so tired.> > > The next trip I was still on 02 at 2 lt but I had a oximeterthat> > would give me my oxygen sats, and I found that where at home I> didn't> > need any oxygen while sitting, I needed at least 1 lt there, and> for> > walking I needed more than double than I used at home. Using> the> > right oxygen made such a difference. it was a much more enjoyable> > trip.> > > My daughter's company moved up there. she said several> > people (people without lung problems) had a hard time aclimatingto> > the elevation. Some even were hospitalized. So it would be agood> > idea to check it out. Marcia> > >> >>

[Guest guest]

Thanx Bruce

Subject: Re: Recently diagnosedTo: Breathe-Support Date: Thursday, February 5, 2009, 6:40 AM

JimPlease, please, now that the "stupid-meds" have worn off do everythingpossible to fight this and if that means hospital head there. If youfeel any worsening during the night, call an ambulance and go orwhatever it takes. Thanks for posting because hopefully many others arereading it. But, in your case just now that you and your doctor arefighting it, if it takes any negative turn or is failing to respondelevate the battle.Sorry to see you so sick and glad to see full out war waged on yourillness. Will be thinking of you until you can report some improvementto us.> > > > >> > > > > Ken, Beth gave you very good advice. I second it,> check> > > > with the doctor first and you may need to have oxygen> > available. I> > > > live at sea level and my daughter is in Reno NV, at around 4500> or> > > > 4900 elevation, depending on who you are talking to. I no> doubt> > had> > > > IPF on my first trip

there, but had not been diagnosed yet,> and I> > > > was so very tired and when we stopped for lunch on the way> > > > there,around 7000 ft elevation, I nearly staggered and felt> dizzy.> > > > I thought it was just because I was stiff from riding so long.> I> > had> > > > no clue at the time.> > > > > The next trip I hand been diagnosed and I was on 02 at 2 lt> and> > I> > > > still felt so tired.> > > > > The next trip I was still on 02 at 2 lt but I had a oximeter> > that> > > > would give me my oxygen sats, and I found that where at home I> > didn't> > > > need any oxygen while sitting, I needed at least 1 lt there,> and> > for> > > > walking I needed more than double than I used at home.>

Using> > the> > > > right oxygen made such a difference.. it was a much more> enjoyable> > > > trip.> > > > > My daughter's company moved up there. she said several> > > > people (people without lung problems) had a hard time> aclimating> > to> > > > the elevation. Some even were hospitalized. So it would be a> > good> > > > idea to check it out. Marcia> > > > >> > > >> > >> >>

[Guest guest]

Ken

in the beginning, I did not cry either. when talking about my disease with the docs and anyone else, it was like i was talking about someone else -- like my head was detached from my lungs -- talked academically rather than emotionally -- that might be one of my coping mechanisms -- still doesn't seem real -- except for coughing spells and those funny feelings in the top of my chest and not being able to talk at times, the words just don't come out

After i was informed about being on the list, thought do i really want this? later in the day, had a coughing spell, not a violent one, but one that wouldn't calm down until i raised the lpm's -- that reaffirmed my decision

denial is a normal stage, there are lots of stages that we all go thru at different times with this disease

sometimes i can be active on this website and sometimes i can't read any of it -- just depends on where i am at the time

hope this makes sense

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Recently diagnosedTo: Breathe-Support Date: Wednesday, February 4, 2009, 10:03 PM

Beth,The information you shared is very valuable - THANK YOU! Whatever you find out will be greatly welcomed! I'm a guy and I keep thinking I can fix this. Intellectually I guess I have accepted IPF though my emotions have NOT. I have an exceptionally close family but still I haven't even felt like crying. I asked the Dr. three times in one visit if my chart actually said the words "Pulmonary Fibrosis" and each time he said yes. He was very patient with me. He is my primary care physician who said not to fly right now. Still my heart says they made a mistake. My dear wife is having the same response.Again, thank you, Beth!Ken> >> > Ken, Beth gave you very good advice. I second it, check > with the doctor first and you may need to have oxygen available. I > live at sea level and my daughter is in Reno NV, at around 4500 or > 4900 elevation, depending on who you are talking to. I no doubt had > IPF on my first trip there, but had

not been diagnosed yet, and I > was so very tired and when we stopped for lunch on the way > there,around 7000 ft elevation, I nearly staggered and felt dizzy. > I thought it was just because I was stiff from riding so long. I had > no clue at the time. > > The next trip I hand been diagnosed and I was on 02 at 2 lt and I > still felt so tired. > > The next trip I was still on 02 at 2 lt but I had a oximeter that > would give me my oxygen sats, and I found that where at home I didn't > need any oxygen while sitting, I needed at least 1 lt there, and for > walking I needed more than double than I used at home. Using the > right oxygen made such a difference. it was a much more enjoyable > trip. > > My

daughter's company moved up there. she said several > people (people without lung problems) had a hard time aclimating to > the elevation. Some even were hospitalized. So it would be a good > idea to check it out. Marcia> >>