Re: Recently diagnosed

[Guest guest]

Hi Ken R,Welcome. Too bad you had to find us, but glad you'rehere.I can't speak to the altitude issue.I have fibrosis caused by sarcoidosis and am in the process ofa medical disability retirement from the VA after 27-plus years

here as an RN in the ICU. (I'm not a vet.) VA care has improvedimmensely in recent years, but please remember that the squeakywheel gets the grease and it's always good to get the various servicereps (DAV, VFW, etc) up on your case. Your service alone DEMANDS

that the VA give you the care you deserve, so don't let the bastardsand bureaucrats get you down!jon-- Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

Ken,

Welcome to the board! As we always say, we're sorry you had reason to look for us but since you did we're glad you found us. Jon has already given you good advice about advocating for yourself with the VA.

I'd just like to give a word of caution about altitude. You don't mention whether you are on supplemental oxygen at this time. If you are, you will need more when you are at higher altitudes. When I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I need significantly more O2 than I do at home here in Durham. Boone is at just over 3000 feet above sea level. Denver is obviously higher than that. The other thing to be aware of is that commercial airliners in flight are pressurized to 8000 feet above sea level. That's very high and again means your oxygen needs will be more than they would be sitting in your living room.

If you're not on oxygen at this time, you might want to discuss this issue with your doctor. You may want to have oxygen available to you in Denver in the event that you need it. I hate the thought of you making that trip and being unable to enjoy it.

Again welcome! I hope you find the support and friendship here that I have!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, January 31, 2009 7:44:48 PMSubject: Recently diagnosed

Hello!This is my first post after observing for several days. I greatly appreciate the support and encouragement I have been reading!Several months ago I was diagnosed with IPF following an Agent Orange physical by the VA. I didn't think much about it but later did some reading and got concerned. I attributed shortness of breath to being out of shape though I am not particularly overweight. Sometimes when talking or laughing I get dizzy. I have occasional chest discomfort. Now I have a cough that I'm not sure is PF or a cold. I'm a nonsmoker.My wife and I are planning to fly to Denver from Sacramento Thursday. I am wondering if I should make the trip in a plane and if the mile high city is a bit much. Any thoughts?Again, I'm learning a lot from this support group – THANKS!Ken R.PS I see there is another Ken so I'll add my last

initial.

[Guest guest]

Ken

welcome to the group, sorry you're here, but glad you found us

for many years, i thought I was out of shape too, a lot of other people on the board will probably say the same thing

most of us never smoked either

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Recently diagnosedTo: Breathe-Support Date: Saturday, January 31, 2009, 7:44 PM

Hello!This is my first post after observing for several days. I greatly appreciate the support and encouragement I have been reading!Several months ago I was diagnosed with IPF following an Agent Orange physical by the VA. I didn't think much about it but later did some reading and got concerned. I attributed shortness of breath to being out of shape though I am not particularly overweight. Sometimes when talking or laughing I get dizzy. I have occasional chest discomfort. Now I have a cough that I'm not sure is PF or a cold. I'm a nonsmoker.My wife and I are planning to fly to Denver from Sacramento Thursday. I am wondering if I should make the trip in a plane and if the mile high city is a bit much. Any thoughts?Again, I'm learning a lot from this support group – THANKS!Ken R.PS I see there is another Ken so I'll add my last

initial.

[Guest guest]

Hi Jon!

Thank you for writing back - I can't tell you what an encouragment

this is. I had never heard of PF until I was told I had it. Still,

I didn't think much of it for a couple of months when I finally

looked it up on the Internet and wow, it took my breath away (no pun

intented)

Please tell me what sarcoidosis is? Did you get this while working

at the VA. The VA has been very good to me so far!

Thanks,

Ken

>

> Hi Ken R,

>

> Welcome. Too bad you had to find us, but glad you're

> here.

> I can't speak to the altitude issue.

>

> I have fibrosis caused by sarcoidosis and am in the process of

> a medical disability retirement from the VA after 27-plus years

> here as an RN in the ICU. (I'm not a vet.) VA care has improved

> immensely in recent years, but please remember that the squeaky

> wheel gets the grease and it's always good to get the various

service

> reps (DAV, VFW, etc) up on your case. Your service alone DEMANDS

> that the VA give you the care you deserve, so don't let the bastards

> and bureaucrats get you down!

>

> jon

> --

> Two wrongs don't make a right,

> but two 's make an airplane.

>

[Guest guest]

Hi Beth!

I'm amazed at the help this group is - I hope I can be as much of an

encouragement as you have already been to me!

The information you shared is valuable. I am meeting with a doctor

tomorrow and will ask his opinion. I am not on oxygen but I can see

that I will be eventually. I am grateful that I can get around and

enjoy things still. I love to camp - that will be very hard to give

up when the time comes!

I would like to know how you are doing and how you discovered your

condition if you would care to share.

Until then -

Ken

PS I'm not sure I'm posting correctly - Let me know if I need to do

it differently.

>

> Ken,

> Welcome to the board! As we always say, we're sorry you had reason

to look for us but since you did we're glad you found us. Jon has

already given you good advice about advocating for yourself with the

VA.

> I'd just like to give a word of caution about altitude. You don't

mention whether you are on supplemental oxygen at this time. If you

are, you will need more when you are at higher altitudes. When

I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I

need significantly more O2 than I do at home here in Durham. Boone is

at just over 3000 feet above sea level. Denver is obviously higher

than that. The other thing to be aware of is that commercial

airliners in flight are pressurized to 8000 feet above sea level.

That's very high and again means your oxygen needs will be more than

they would be sitting in your living room.

> If you're not on oxygen at this time, you might want to discuss

this issue with your doctor. You may want to have oxygen available to

you in Denver in the event that you need it. I hate the thought of

you making that trip and being unable to enjoy it.

>

> Again welcome! I hope you find the support and friendship here that

I have!

>  

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: kjraphael

> To: Breathe-Support

> Sent: Saturday, January 31, 2009 7:44:48 PM

> Subject: Recently diagnosed

>

>

> Hello!

>

> This is my first post after observing for several days. I greatly

> appreciate the support and encouragement I have been reading!

>

> Several months ago I was diagnosed with IPF following an Agent

Orange

> physical by the VA. I didn't think much about it but later did some

> reading and got concerned. I attributed shortness of breath to

being

> out of shape though I am not particularly overweight. Sometimes

when

> talking or laughing I get dizzy. I have occasional chest

> discomfort. Now I have a cough that I'm not sure is PF or a cold.

> I'm a nonsmoker.

>

> My wife and I are planning to fly to Denver from Sacramento

> Thursday. I am wondering if I should make the trip in a plane and

if

> the mile high city is a bit much. Any thoughts?

>

> Again, I'm learning a lot from this support group – THANKS!

>

> Ken R.

>

> PS I see there is another Ken so I'll add my last initial.

>

[Guest guest]

Hi!

Thank you for responding - I'm finding this group unbelievably

encouraging!

Please tell me how you found out you had PF. Have you been helped

medically?

Thanks,

Ken

>

> From: kjraphael

> Subject: Recently diagnosed

> To: Breathe-Support

> Date: Saturday, January 31, 2009, 7:44 PM

>

>

>

>

>

>

> Hello!

>

> This is my first post after observing for several days. I greatly

> appreciate the support and encouragement I have been reading!

>

> Several months ago I was diagnosed with IPF following an Agent

Orange

> physical by the VA. I didn't think much about it but later did some

> reading and got concerned. I attributed shortness of breath to

being

> out of shape though I am not particularly overweight. Sometimes

when

> talking or laughing I get dizzy. I have occasional chest

> discomfort. Now I have a cough that I'm not sure is PF or a cold.

> I'm a nonsmoker.

>

> My wife and I are planning to fly to Denver from Sacramento

> Thursday. I am wondering if I should make the trip in a plane and

if

> the mile high city is a bit much. Any thoughts?

>

> Again, I'm learning a lot from this support group – THANKS!

>

> Ken R.

>

> PS I see there is another Ken so I'll add my last initial.

>

[Guest guest]

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,

You are the first to mention camping. I have loved to camp for so long. My last big adventure was traveling across country alone, driving from South Carolina to Anchorage. I hit as many national parks as I could zig zag through, sleeping in a tent each night. I proved I could take care of myself...even in a tornado in Nebraska where I yanked my tent up and shoved it in the car so fast that one of the bungee cords shot a tent stake that I never found. I was sure they were going to find some poor camper impaled the next morning. My last little camping trip was salmon fishing on the Kenai. I woke up and couldn't stand up to get out of the tent. This was before my diagnosis. Now I picnic, spending long days out with my alternator and portable concentrator in the car. I can use my Marathon pack until it runs out, then hook up to my 50ft tether. I do miss sitting around the campfire listening to water and watching the stars. Since then we have

rented motor homes or gotten a handicapped pass to drive the Denali park road, where private cars are not permitted and staying in a hotel for the night. I did like laying in my sleeping bag and looking up at the stars but a nice bed and shower are admittedly more comfortable. It is different, I miss going on trails, walking through the country side and on the beach but I can get pretty close. I go a little further with my binoculars and camera.

I have gotten plenty of help at hotels while traveling alone and takes care of our things after I have done the planning, made the arrangements and packed. Now I want to go plan one of the trips on my to do list. One problem, the last conference I attended in winter had the handicapped parking places pretty far from the entrance and it was on an icy slope. It was hard to get in and out to the car. Next time if anything like that happens I will be sure to have the front desk number with me so that I can call for someone to come out and help me..

Margaret

To: Breathe-Support Sent: Sunday, February 1, 2009 12:33:01 PMSubject: Re: Recently diagnosed

Hi Beth!I'm amazed at the help this group is - I hope I can be as much of an encouragement as you have already been to me!The information you shared is valuable. I am meeting with a doctor tomorrow and will ask his opinion. I am not on oxygen but I can see that I will be eventually. I am grateful that I can get around and enjoy things still. I love to camp - that will be very hard to give up when the time comes!I would like to know how you are doing and how you discovered your condition if you would care to share.Until then -KenPS I'm not sure I'm posting correctly - Let me know if I need to do it differently.>> Ken,> Welcome to the

board! As we always say, we're sorry you had reason to look for us but since you did we're glad you found us. Jon has already given you good advice about advocating for yourself with the VA. > I'd just like to give a word of caution about altitude. You don't mention whether you are on supplemental oxygen at this time. If you are, you will need more when you are at higher altitudes. When I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I need significantly more O2 than I do at home here in Durham. Boone is at just over 3000 feet above sea level. Denver is obviously higher than that. The other thing to be aware of is that commercial airliners in flight are pressurized to 8000 feet above sea level. That's very high and again means your oxygen needs will be more than they would be sitting in your living room. > If you're not on oxygen at

this time, you might want to discuss this issue with your doctor. You may want to have oxygen available to you in Denver in the event that you need it. I hate the thought of you making that trip and being unable to enjoy it.> > Again welcome! I hope you find the support and friendship here that I have!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > ____________ _________ _________ __> From: kjraphael <kjraphael@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, January 31, 2009 7:44:48 PM> Subject: Recently diagnosed> > > Hello!> > This is my first post after

observing for several days. I greatly > appreciate the support and encouragement I have been reading!> > Several months ago I was diagnosed with IPF following an Agent Orange > physical by the VA. I didn't think much about it but later did some > reading and got concerned. I attributed shortness of breath to being > out of shape though I am not particularly overweight. Sometimes when > talking or laughing I get dizzy. I have occasional chest > discomfort. Now I have a cough that I'm not sure is PF or a cold. > I'm a nonsmoker.> > My wife and I are planning to fly to Denver from Sacramento > Thursday. I am wondering if I should make the trip in a plane and if > the mile high city is a bit much. Any thoughts?> > Again, I'm learning a lot from this support group – THANKS!> > Ken R.> > PS I see there is

another Ken so I'll add my last initial.>

[Guest guest]

Hi Ken,

You are the first to mention camping. I have loved to camp for so long. My last big adventure was traveling across country alone, driving from South Carolina to Anchorage. I hit as many national parks as I could zig zag through, sleeping in a tent each night. I proved I could take care of myself...even in a tornado in Nebraska where I yanked my tent up and shoved it in the car so fast that one of the bungee cords shot a tent stake that I never found. I was sure they were going to find some poor camper impaled the next morning. My last little camping trip was salmon fishing on the Kenai. I woke up and couldn't stand up to get out of the tent. This was before my diagnosis. Now I picnic, spending long days out with my alternator and portable concentrator in the car. I can use my Marathon pack until it runs out, then hook up to my 50ft tether. I do miss sitting around the campfire listening to water and watching the stars. Since then we have

rented motor homes or gotten a handicapped pass to drive the Denali park road, where private cars are not permitted and staying in a hotel for the night. I did like laying in my sleeping bag and looking up at the stars but a nice bed and shower are admittedly more comfortable. It is different, I miss going on trails, walking through the country side and on the beach but I can get pretty close. I go a little further with my binoculars and camera.

I have gotten plenty of help at hotels while traveling alone and takes care of our things after I have done the planning, made the arrangements and packed. Now I want to go plan one of the trips on my to do list. One problem, the last conference I attended in winter had the handicapped parking places pretty far from the entrance and it was on an icy slope. It was hard to get in and out to the car. Next time if anything like that happens I will be sure to have the front desk number with me so that I can call for someone to come out and help me..

Margaret

To: Breathe-Support Sent: Sunday, February 1, 2009 12:33:01 PMSubject: Re: Recently diagnosed

Hi Beth!I'm amazed at the help this group is - I hope I can be as much of an encouragement as you have already been to me!The information you shared is valuable. I am meeting with a doctor tomorrow and will ask his opinion. I am not on oxygen but I can see that I will be eventually. I am grateful that I can get around and enjoy things still. I love to camp - that will be very hard to give up when the time comes!I would like to know how you are doing and how you discovered your condition if you would care to share.Until then -KenPS I'm not sure I'm posting correctly - Let me know if I need to do it differently.>> Ken,> Welcome to the

board! As we always say, we're sorry you had reason to look for us but since you did we're glad you found us. Jon has already given you good advice about advocating for yourself with the VA. > I'd just like to give a word of caution about altitude. You don't mention whether you are on supplemental oxygen at this time. If you are, you will need more when you are at higher altitudes. When I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I need significantly more O2 than I do at home here in Durham. Boone is at just over 3000 feet above sea level. Denver is obviously higher than that. The other thing to be aware of is that commercial airliners in flight are pressurized to 8000 feet above sea level. That's very high and again means your oxygen needs will be more than they would be sitting in your living room. > If you're not on oxygen at

this time, you might want to discuss this issue with your doctor. You may want to have oxygen available to you in Denver in the event that you need it. I hate the thought of you making that trip and being unable to enjoy it.> > Again welcome! I hope you find the support and friendship here that I have!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > ____________ _________ _________ __> From: kjraphael <kjraphael@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, January 31, 2009 7:44:48 PM> Subject: Recently diagnosed> > > Hello!> > This is my first post after

observing for several days. I greatly > appreciate the support and encouragement I have been reading!> > Several months ago I was diagnosed with IPF following an Agent Orange > physical by the VA. I didn't think much about it but later did some > reading and got concerned. I attributed shortness of breath to being > out of shape though I am not particularly overweight. Sometimes when > talking or laughing I get dizzy. I have occasional chest > discomfort. Now I have a cough that I'm not sure is PF or a cold. > I'm a nonsmoker.> > My wife and I are planning to fly to Denver from Sacramento > Thursday. I am wondering if I should make the trip in a plane and if > the mile high city is a bit much. Any thoughts?> > Again, I'm learning a lot from this support group – THANKS!> > Ken R.> > PS I see there is

another Ken so I'll add my last initial.>

[Guest guest]

Re needing oxygen

That is what happened to me. When I told one doctor that I was staggering, dizzy and my vision was blacking out; she asked me if I thought I had MS...wasn't she supposed to be telling me what I had??? That was in the office I trusted too long.

Margaret

To: Breathe-Support Sent: Monday, February 2, 2009 12:23:16 AMSubject: Re: Recently diagnosed

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 so happy to hear that you are finding the group helpful. You are posting just fine so put that worry out of your head.

You asked a little bit about me. Here's the 'readers digest' version. I was diagnosed with Fibrotic NSIP (non specific interstitial pneumonitis) in June of 2006. I was 46 years old at the time. At the time of my diagnosis I had been coping for a couple of years with a chronic cough, shortness of breath etc etc. My doctor had treated me for asthma (which it turns out I don't have) and bronchitis a couple of times. Memorial Day in 2006 I finally became ill enough that a family member called 911 and would no longer listen to my reasons and excuses for why I felt and looked so terrible. I was hospitalized in full blown congestive heart failure and was finally diagnosed with pulmonary fibrosis. During that hospitalization I had a open lung biopsy, had a difficult time with the anesthesia and landed in the ICU on a ventilator for a few days. I was treated with very high doses of the steroid Solumedrol. It likely

saved my life. I was finally discharged in mid-June on O2 24/7 and have been since. I was treated for several months with high doses of prednisone

I can no longer work and am on Social Security Disability. I share a home with my elderly parents in Durham, NC. When I think about how utterly my life has changed in the last few years it boggles me. But life goes on and gradually you adjust. They say what doesn't kill you makes you stronger and I can definitely attest to the truth of that old saying.

I was recently diagnosed with a long suspected auto immune disease called Dermatomyositis and have begun treatment on Imuran. The DM is the likely cause of my lung disease.

If you have any more questions about my experience please ask. I'm a pretty open book.

Please continue to stick around. You are very welcome here!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, February 1, 2009 4:33:01 PMSubject: Re: Recently diagnosed

Hi Beth!I'm amazed at the help this group is - I hope I can be as much of an encouragement as you have already been to me!The information you shared is valuable. I am meeting with a doctor tomorrow and will ask his opinion. I am not on oxygen but I can see that I will be eventually. I am grateful that I can get around and enjoy things still. I love to camp - that will be very hard to give up when the time comes!I would like to know how you are doing and how you discovered your condition if you would care to share.Until then -KenPS I'm not sure I'm posting correctly - Let me know if I need to do it differently.>> Ken,> Welcome to the

board! As we always say, we're sorry you had reason to look for us but since you did we're glad you found us. Jon has already given you good advice about advocating for yourself with the VA. > I'd just like to give a word of caution about altitude. You don't mention whether you are on supplemental oxygen at this time. If you are, you will need more when you are at higher altitudes. When I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I need significantly more O2 than I do at home here in Durham. Boone is at just over 3000 feet above sea level. Denver is obviously higher than that. The other thing to be aware of is that commercial airliners in flight are pressurized to 8000 feet above sea level. That's very high and again means your oxygen needs will be more than they would be sitting in your living room. > If you're not on oxygen at

this time, you might want to discuss this issue with your doctor. You may want to have oxygen available to you in Denver in the event that you need it. I hate the thought of you making that trip and being unable to enjoy it.> > Again welcome! I hope you find the support and friendship here that I have!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > ____________ _________ _________ __> From: kjraphael <kjraphael@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, January 31, 2009 7:44:48 PM> Subject: Recently diagnosed> > > Hello!> > This is my first post after

observing for several days. I greatly > appreciate the support and encouragement I have been reading!> > Several months ago I was diagnosed with IPF following an Agent Orange > physical by the VA. I didn't think much about it but later did some > reading and got concerned. I attributed shortness of breath to being > out of shape though I am not particularly overweight. Sometimes when > talking or laughing I get dizzy. I have occasional chest > discomfort. Now I have a cough that I'm not sure is PF or a cold. > I'm a nonsmoker.> > My wife and I are planning to fly to Denver from Sacramento > Thursday. I am wondering if I should make the trip in a plane and if > the mile high city is a bit much. Any thoughts?> > Again, I'm learning a lot from this support group – THANKS!> > Ken R.> > PS I see there is

another Ken so I'll add my last initial.>

[Guest guest]

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!

Ken

PS 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, 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]

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

To: Breathe-Support Sent: 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]

Dear Margaret,

I loved your email - I could identify.

We've done it all from backpacking on horses into the Wallowas to RVing. At this stage of things RVing is wonderful. I'll just share one story. Our family was heading out on a trip years ago with our first 16foot trailer. We saw a Burger King and decided to go through the drive through (* & & $#@)_)(* & ^@!

Stay in touch!

Ken

To: Breathe-Support Sent: Monday, February 2, 2009 2:39:41 AMSubject: Re: Re: Recently diagnosed

Hi Ken,

You are the first to mention camping. I have loved to camp for so long. My last big adventure was traveling across country alone, driving from South Carolina to Anchorage. I hit as many national parks as I could zig zag through, sleeping in a tent each night. I proved I could take care of myself....even in a tornado in Nebraska where I yanked my tent up and shoved it in the car so fast that one of the bungee cords shot a tent stake that I never found. I was sure they were going to find some poor camper impaled the next morning. My last little camping trip was salmon fishing on the Kenai. I woke up and couldn't stand up to get out of the tent. This was before my diagnosis. Now I picnic, spending long days out with my alternator and portable concentrator in the car. I can use my Marathon pack until it runs out, then hook up to my 50ft tether. I do miss sitting around the campfire listening to water and watching the stars. Since then we have

rented motor homes or gotten a handicapped pass to drive the Denali park road, where private cars are not permitted and staying in a hotel for the night. I did like laying in my sleeping bag and looking up at the stars but a nice bed and shower are admittedly more comfortable. It is different, I miss going on trails, walking through the country side and on the beach but I can get pretty close. I go a little further with my binoculars and camera.

I have gotten plenty of help at hotels while traveling alone and takes care of our things after I have done the planning, made the arrangements and packed. Now I want to go plan one of the trips on my to do list. One problem, the last conference I attended in winter had the handicapped parking places pretty far from the entrance and it was on an icy slope. It was hard to get in and out to the car. Next time if anything like that happens I will be sure to have the front desk number with me so that I can call for someone to come out and help me...

Margaret

From: kjraphael <kjraphael (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Sunday, February 1, 2009 12:33:01 PMSubject: Re: Recently diagnosed

Hi Beth!I'm amazed at the help this group is - I hope I can be as much of an encouragement as you have already been to me!The information you shared is valuable. I am meeting with a doctor tomorrow and will ask his opinion. I am not on oxygen but I can see that I will be eventually. I am grateful that I can get around and enjoy things still. I love to camp - that will be very hard to give up when the time comes!I would like to know how you are doing and how you discovered your condition if you would care to share.Until then -KenPS I'm not sure I'm posting correctly - Let me know if I need to do it differently.>> Ken,> Welcome to the

board! As we always say, we're sorry you had reason to look for us but since you did we're glad you found us. Jon has already given you good advice about advocating for yourself with the VA. > I'd just like to give a word of caution about altitude. You don't mention whether you are on supplemental oxygen at this time. If you are, you will need more when you are at higher altitudes. When I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I need significantly more O2 than I do at home here in Durham. Boone is at just over 3000 feet above sea level. Denver is obviously higher than that. The other thing to be aware of is that commercial airliners in flight are pressurized to 8000 feet above sea level. That's very high and again means your oxygen needs will be more than they would be sitting in your living room. > If you're not on oxygen at

this time, you might want to discuss this issue with your doctor. You may want to have oxygen available to you in Denver in the event that you need it. I hate the thought of you making that trip and being unable to enjoy it.> > Again welcome! I hope you find the support and friendship here that I have!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositi s 11/08> > > > > ____________ _________ _________ __> From: kjraphael <kjraphael@. ..>> To: Breathe-Support@ yahoogroups. com> Sent: Saturday, January 31, 2009 7:44:48 PM> Subject: Recently diagnosed> > > Hello!> > This is my first post after

observing for several days. I greatly > appreciate the support and encouragement I have been reading!> > Several months ago I was diagnosed with IPF following an Agent Orange > physical by the VA. I didn't think much about it but later did some > reading and got concerned. I attributed shortness of breath to being > out of shape though I am not particularly overweight. Sometimes when > talking or laughing I get dizzy. I have occasional chest > discomfort. Now I have a cough that I'm not sure is PF or a cold. > I'm a nonsmoker.> > My wife and I are planning to fly to Denver from Sacramento > Thursday. I am wondering if I should make the trip in a plane and if > the mile high city is a bit much. Any thoughts?> > Again, I'm learning a lot from this support group – THANKS!> > Ken R.> > PS I see there is

another Ken so I'll add my last initial.>

[Guest guest]

Could anyone tell me why my post has all those A's in it. I certainly didn't type them in. and in another post when ever I typed contractions of can not and do not it put in cent signs and I know I didn't type those in as my keyboard doesn't have a cent sign.

Marcia

[Guest guest]

Ha, Patti, I had paid for a non refundable gold mine trip to Kantishna near Denali. When we talked to my minister about getting married she only had three weekends before she moved back to . We didn't have time to get ready for the first weekend and I would have gotten back from the back country jeep trip late Saturday and had to be ready for the wedding Sunday afternoon. Well I asked if he would like to come along and make that part of our honeymoon. He said sure... The first night was wonderful with loons calling on the lake. The second night it rained on the tent.. Third night it was pretty chilly and damp. Fourth morning it was wet and he asked if I wanted to go home. Riot act, I paid for it I am going! We went to an outrageously expensive hotel for two

nights, got up and drove to the meeting place in a very dense fog with a cold drizzle...Since so many of us wanted to cancel our money was refunded....What did and I learn about each other...I am a die hard camper who doesn't waste money and he is a wimp that prefers fine hotels and dining so I am happy to let him treat me. )

Margaret

To: Breathe-Support Sent: Monday, February 2, 2009 4:59:16 PMSubject: Re: Recently diagnosed

Funny tried to camp the year before at hershey with my daughter and family and my sister was upset and my friend so we booked a hotel room just in case.. well, once we hooked up my concentrator to the electrical system at the campground. lo and behold forgot about the camp fires and had to stay at the hotel..egads. .. but was a good trip.. patti,nj,ipf 7'06> >> > Ken,> > Welcome to the board! As we always say, we're sorry you had reason > to look for us but since you did we're glad you found us. Jon has > already given you good advice about advocating for yourself with the > VA. > > I'd just like to give a word of caution about altitude. You don't > mention whether you are on supplemental oxygen at this time. If you > are, you will need more when you are at higher altitudes. When > I visit my son who lives in Boone, NC (in the Blue Ridge Mountains) I > need significantly

more O2 than I do at home here in Durham. Boone is > at just over 3000 feet above sea level. Denver is obviously higher > than that. The other thing to be aware of is that commercial > airliners in flight are pressurized to 8000 feet above sea level. > That's very high and again means your oxygen needs will be more than > they would be sitting in your living room. > > If you're not on oxygen at this time, you might want to discuss > this issue with your doctor. You may want to have oxygen available to > you in Denver in the event that you need it. I hate the thought of > you making that trip and being unable to enjoy it.> > > > Again welcome! I hope you find the support and friendship here that > I have!> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP

06/06 Dermatomyositi s 11/08> > > > > > > > > > ____________ _________ _________ __> > From: kjraphael <kjraphael@ ..>> > To: Breathe-Support@ yahoogroups. com> > Sent: Saturday, January 31, 2009 7:44:48 PM> > Subject: Recently diagnosed> > > > > > Hello!> > > > This is my first post after observing for several days. I greatly > > appreciate the support and encouragement I have been reading!> > > > Several months ago I was diagnosed with IPF following an Agent > Orange > > physical by the VA. I didn't think much about it but later did some > > reading and got concerned. I attributed shortness of breath to > being > > out of shape though I am not particularly overweight. Sometimes > when > >

talking or laughing I get dizzy. I have occasional chest > > discomfort. Now I have a cough that I'm not sure is PF or a cold. > > I'm a nonsmoker.> > > > My wife and I are planning to fly to Denver from Sacramento > > Thursday. I am wondering if I should make the trip in a plane and > if > > the mile high city is a bit much. Any thoughts?> > > > Again, I'm learning a lot from this support group – THANKS!> > > > Ken R.> > > > PS I see there is another Ken so I'll add my last initial.> >>

[Guest guest]

Hi Marcia,

I don't know the answer to that question. When I see your posts on my email they don't have all those A's and the other odd things. When they appear on the board itself those things are there. I'm sure there is a technical explanation and I'm sure it has to do with Yahoo.

I'll email them and see if I can get a clear explanation! But I won't hold my breath, LOL

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, February 3, 2009 3:33:09 AMSubject: Re: Recently diagnosed

Could anyone tell me why my post has all those A's in it. I certainly didn't type them in. and in another post when ever I typed contractions of can not and do not it put in cent signs and I know I didn't type those in as my keyboard doesn't have a cent sign.

Marcia

[Guest guest]

Marcia/MB

Even Beth's post here has some of those in the summary version you

see on the web but when you open it they are all gone. It has something

to do with the Yahoo Rich Text Editor which has been in Beta since the

beginning of time and apparently will never come out. It's one of those

things that just happens.

>

> Hi Marcia,

> I don't know the answer to that question. When I see your posts on my

email they don't have all those A's and the other odd things. When they

appear on the board itself those things are there. I'm sure there is a

technical explanation and I'm sure it has to do with Yahoo.

> I'll email them and see if I can get a clear explanation! But I won't

hold my breath, LOL

>

> Beth in North Carolina

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

>

>

>

> ________________________________

> From: " Chatty_katt3@... " chatty_katt3@...

> To: Breathe-Support

> Sent: Tuesday, February 3, 2009 3:33:09 AM

> Subject: Re: Recently diagnosed

>

>

> Could anyone tell me why my post has all those A's in it. I certainly

didn't type them in. and in another post when ever I typed contractions

of can not and do not it put in cent signs and I know I didn't type

those in as my keyboard doesn't have a cent sign.

> Marcia

>

[Guest guest]

Bruce,That singer would be Cook who graduated HS with my son.Apria here is excellent. The snafu was the weekend getting in the way of paperwork.An update:Infectious Diseases and pulmodude are thinking three possibilities:

Sarcoid flareup---continue blasting me with steroids. Solumedrol sucks. NO sleep.Pleural effusion--fluid build-up in pleural space where surgery was, compressing the lung and causing

the shortness of air. treatment: stick a needle in and evacuate the fluid. result: remarkable relief in shortness of air.Lung infection--for which I'm on three antibiotics.

jon-- Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

Jon

I made a stop in Blue Springs on my way back from Chicago last April. My

ex-wife is Cook's biggest fan in history and was from the time of

his audition. I went by the high school and took photos of the school

and of the baseball field on which he played. I went to the local

Wal-mart and got tshirts from the high school featuring the Jaguars. She

wore these regularly to school to teach on idol days. More interesting

she did this in spite of the fact Castro graduated from the high school

at which she teaches. Now, I also drove down town and visited the Blue

Springs Chamber of Commerce and got one of the posters that was being

being placed in all the merchant windows.

On the day of his trip home we watched the entire day and proceedings

online through local KC tv and, of course, I had seen many of the sites

in person. Blue Springs seems not unlike some here, a small sleepy town

not long ago but not quite a lot built up as people look for places to

live outside of KC. Still, retaining a lot of its community closeness

and pride.

>

> Bruce,

>

> That singer would be Cook who graduated HS with my son.

>

> Apria here is excellent. The snafu was the weekend getting in the way

of

> paperwork.

>

> An update:

>

> Infectious Diseases and pulmodude are thinking three possibilities:

>

> Sarcoid flareup---continue blasting me with steroids. Solumedrol

sucks. NO

> sleep.

> Pleural effusion--fluid build-up in pleural space where surgery was,

> compressing the lung and causing

> the shortness of air. treatment: stick a

needle

> in and evacuate the fluid.

> result: remarkable relief in shortness of

air.

> Lung infection--for which I'm on three antibiotics.

>

> jon

> --

> Two wrongs don't make a right,

> but two 's make an airplane.

>

[Guest guest]

I was looking at the post and I think maybe the A's are where there are spaces and so many are between words because either I need a new keyboard, or I lean on the space bar a lot. I know when I do spell check, I tend to leave extra spaces all over the place. LOL

Marcia

[Guest guest]

I was looking at the post and I think maybe the A's are where there are spaces and so many are between words because either I need a new keyboard, or I lean on the space bar a lot. I know when I do spell check, I tend to leave extra spaces all over the place. LOL

Marcia

[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]

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>