Re: Recently diagnosed

[Guest guest]

Not sure where I am, in denial or in acceptance, or just confused. Still coping

with the whole idea. But, could you answer a few questions for me? What is the

normal progression of this disease? I realize we are all different, however,

just the basic pattern. General steps.

Is being lightheaded, dizzy and with blurry vision on occasion, the result of

medication or lack of sleep or the disease?

Also, I am on o2, 2 liters continuous. I have started to notice that my feet

seem to be colder than normal and sort of bruised and purple in places...is this

lack of oxygen?

How do you relieve the inability to fall asleep? I seem to be unable to sleep

for days at a time.

Thanks,

NSIP/UIP 08

>

> Subject: Re: Recently diagnosed

> To: Breathe-Support

> Date: Thursday, February 5, 2009, 12:31 PM

> 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]

PinkMost difficult things for me in adapting are:Impatience....when I figure out things I want to do, I want to hurry up and do them. I feel the time limitations I may face and don't want to not get them in.Not being able to run to the aid of others all the time as i did. Especially when they are sick (Actually I was way too much caretaker for it to be healthy). > > >> > > 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]

Marcia, Thank you for your advise - It makes perfect sense! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 1:41:21 AMSubject: Re: Recently diagnosed

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]

Jean,

Seems I’ve heard something about grapefruit recently – I love it but can do without it. My Drs. Want to know what supplements I’m on – Your email makes sense. Thank you very much!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 2:21:39 AMSubject: Re: Recently diagnosed

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]

Jean,

Again, you make sense – I’ve got to work on a new way of thinking – It’s tough!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 2:30:18 AMSubject: Re: Recently diagnosed

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]

Thank you! Boy, do I identify. I just can't accept this. I'm not angry. It just doesn't seem possible. Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 8:51:14 AMSubject: Re: Re: Recently diagnosed

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]

What a perspective!!!!!!!!!!!!!!!! It needs to be a regular on this wonderful board!

To: Breathe-Support Sent: Thursday, February 5, 2009 9:31:49 AMSubject: 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]

You make total sense - I completely identify! Thank you for identifying with me! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 11:22:46 AMSubject: Re: Re: Recently diagnosed

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

From: kjraphael <kjraphael (AT) yahoo (DOT) com>Subject: Re: Recently diagnosedTo: Breathe-Support@ yahoogroups. comDate: 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> >>

[Guest guest]

Hi !

I'm too new to this to answer your questions - I have too many of my own. I think others will pick it up here. You should get a lot of good counsel from the exceptional people on this board!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 2:02:01 PMSubject: Re: Re: Recently diagnosed

Not sure where I am, in denial or in acceptance, or just confused. Still coping with the whole idea. But, could you answer a few questions for me? What is the normal progression of this disease? I realize we are all different, however, just the basic pattern. General steps.Is being lightheaded, dizzy and with blurry vision on occasion, the result of medication or lack of sleep or the disease? Also, I am on o2, 2 liters continuous. I have started to notice that my feet seem to be colder than normal and sort of bruised and purple in places...is this lack of oxygen?How do you relieve the inability to fall asleep? I seem to be unable to sleep for days at a time.Thanks,NSIP/UIP 08> From: Bruce Moreland

<brucemoreland@ gmail.com>> Subject: Re: Recently diagnosed> To: Breathe-Support@ yahoogroups. com> Date: Thursday, February 5, 2009, 12:31 PM> 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]

Ken...give yourself time. You've had a shock and are still coping. Your family is shocked. There is no one to be the "strong one". My grandmother used to say, "What can't be cured must be endured" and that's what we learn to do here. Endure.

Gather info. it will help knowing what's going on and don't compare you with anyone else...we're all different.

You'll be ok Ken. I know you will. Time takes time.

Hugs to you.

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]

, Perhaps I should add that I have the same symptoms of lightheadedness, dizziness, and eye problems now and then. I, like you, haven't any idea if this is related to IPF or not. Even after saying that, I'm doing well!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 2:02:01 PMSubject: Re: Re: Recently diagnosed

Not sure where I am, in denial or in acceptance, or just confused. Still coping with the whole idea. But, could you answer a few questions for me? What is the normal progression of this disease? I realize we are all different, however, just the basic pattern. General steps.Is being lightheaded, dizzy and with blurry vision on occasion, the result of medication or lack of sleep or the disease? Also, I am on o2, 2 liters continuous. I have started to notice that my feet seem to be colder than normal and sort of bruised and purple in places...is this lack of oxygen?How do you relieve the inability to fall asleep? I seem to be unable to sleep for days at a time.Thanks,NSIP/UIP 08> From: Bruce Moreland

<brucemoreland@ gmail.com>> Subject: Re: Recently diagnosed> To: Breathe-Support@ yahoogroups. com> Date: Thursday, February 5, 2009, 12:31 PM> 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]

You're a caring person with very good advise - I'll give it time, right now it's surreal. Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 6:04:03 PMSubject: Re: Re: Recently diagnosed

Ken...give yourself time. You've had a shock and are still coping. Your family is shocked. There is no one to be the "strong one". My grandmother used to say, "What can't be cured must be endured" and that's what we learn to do here. Endure.

Gather info. it will help knowing what's going on and don't compare you with anyone else...we're all different.

You'll be ok Ken. I know you will. Time takes time.

Hugs to you.

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]

Ken,

I'm sorry it has taken so long to welcome you to the board. I joined

just a few months ago myself and have found this family of people to

be such an important part of my life. I hope you find everyone as

helpful and endearing as I have.

33 FL

IPF dx01/06

>

> 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...tell me about you...your age, where you live, your family...

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]

I'd be glad to:

I'm 65, I live in Lodi, CA, I've been married 42 years, I have four adult children, and 10 grandchildren. I'm a very happy man with much to be grateful for. If the Lord took me home today I have had a spectacular life - I am truly blessed! Tell me about yourself!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 6:20:35 PMSubject: Re: Re: Recently diagnosed

Ken...tell me about you...your age, where you live, your family...

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]

Absolutely - Totally! Thank you! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 6:20:57 PMSubject: Re: Recently diagnosed

Ken, I'm sorry it has taken so long to welcome you to the board. I joined just a few months ago myself and have found this family of people to be such an important part of my life. I hope you find everyone as helpful and endearing as I have. 33 FLIPF dx01/06>> 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 ,

I have gotten lightheaded, dizzy and have blurry vision almost to the point of passing out. That is what was happening to me before my diagnosis and now when I over do it and am short of oxygen. I was gasping for air with my mouth wide open and panic in my eyes. I also stagger, especially in the yard and on uneven surfaces. It is the disease preventing us from getting adequate oxygen to our bodies. My thinking becomes fuzzy also.

My feet and hands are almost always cold, well I am in Alaska, but in doors. They turn blue, as do my nail beds and lower legs occasionally. Aside from feeling cold when blue, I am also blue upon waking sometimes. I will feel warm, especially peaceful as well as being blue. I am an admitted mess.

I don't seem to have side effects from any of my meds. I have been on a c-pap for sleep apnea for about five years. It forces me to breath with my mouth closed while sleeping. My oxygen was OK while sleeping but I can't take any chances on losing more brain cells due to lack of oxygen. As a precaution I hook my oxygen in with the air from the c-pap.

When I was having trouble sleeping, it was from either pain in my body, anxiety or a cold. I take ultram xr for the pain, alprazelam for anxiety as needed and various inhalers and fever reducers for the occasional cold. I tried ambien but now use otc

acetaminophen pm. Always check with your doctor.

My diagnoses have taken me from sleep apnea, to PH, COPD, PF, respiratory failure, enlarged heart and heart failure. The first pulmonologist didn't diagnose and treat me properly or I would probably be ok now. I never considered lung disease because I have never smoked. A cardiologist found the PH when I thought my chest pain must have been from my heart. The Pulmonologist I have now said he wished he had seen me ten years earlier. He was in Colorado though at that time.

I am on between 3 and 10 liters, depending on what I am doing. Not long ago there was a discussion over the difference between PF and COPD on this board...talk about confused... Take the best care of yourself that you can and figure things out as you go along. Oh, I take tracleer. Best wishes,

Margaret

To: Breathe-Support Sent: Thursday, February 5, 2009 1:02:01 PMSubject: Re: Re: Recently diagnosed

Not sure where I am, in denial or in acceptance, or just confused. Still coping with the whole idea. But, could you answer a few questions for me? What is the normal progression of this disease? I realize we are all different, however, just the basic pattern. General steps.Is being lightheaded, dizzy and with blurry vision on occasion, the result of medication or lack of sleep or the disease? Also, I am on o2, 2 liters continuous. I have started to notice that my feet seem to be colder than normal and sort of bruised and purple in places...is this lack of oxygen?How do you relieve the inability to fall asleep? I seem to be unable to sleep for days at a time.Thanks,NSIP/UIP 08> From: Bruce Moreland

<brucemoreland@ gmail.com>> Subject: Re: Recently diagnosed> To: Breathe-Support@ yahoogroups. com> Date: Thursday, February 5, 2009, 12:31 PM> 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]

Ken..your wonderful family has certainly circled the wagons around you and I'm glad you have good support. Hopefully the kids are not scattered to far away.

I'm 70....goodness, how I got here I'll never know!. I'm married to a wonderful man named Rich, we have 7 kids between us although unfortunately, close to only 2 of them. Long stories. A daughter lives about .5 miles from me and the other one is about 30 miles.

I've been on the board nearly 3 years. When I first joined the board I was positive I would be dead within a month.

I'm kinda the mama-hen here. I tuck everyone under my wings (whether they like it or not...heheee) and cluck over them and worry over them. Love 'em all!

We live in Oregon, not far from Portland. I'm a native and Rich was born in St. MN. He is my caregiver and so very patient with me. I'm a very lucky woman to have him.

Glad to have you with us Ken. I'll watch for your posts.

Now, off to bed/TV for me.

Sleep well tonight.

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]

Thank you for sharing - You seem like a very special lady! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 7:25:08 PMSubject: Re: Re: Recently diagnosed

Ken..your wonderful family has certainly circled the wagons around you and I'm glad you have good support. Hopefully the kids are not scattered to far away.

I'm 70....goodness, how I got here I'll never know!. I'm married to a wonderful man named Rich, we have 7 kids between us although unfortunately, close to only 2 of them. Long stories. A daughter lives about .5 miles from me and the other one is about 30 miles.

I've been on the board nearly 3 years. When I first joined the board I was positive I would be dead within a month.

I'm kinda the mama-hen here. I tuck everyone under my wings (whether they like it or not...heheee) and cluck over them and worry over them. Love 'em all!

We live in Oregon, not far from Portland. I'm a native and Rich was born in St. MN. He is my caregiver and so very patient with me. I'm a very lucky woman to have him.

Glad to have you with us Ken. I'll watch for your posts.

Now, off to bed/TV for me.

Sleep well tonight.

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]

Thank you for sharing - You seem like a very special lady! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 7:25:08 PMSubject: Re: Re: Recently diagnosed

Ken..your wonderful family has certainly circled the wagons around you and I'm glad you have good support. Hopefully the kids are not scattered to far away.

I'm 70....goodness, how I got here I'll never know!. I'm married to a wonderful man named Rich, we have 7 kids between us although unfortunately, close to only 2 of them. Long stories. A daughter lives about .5 miles from me and the other one is about 30 miles.

I've been on the board nearly 3 years. When I first joined the board I was positive I would be dead within a month.

I'm kinda the mama-hen here. I tuck everyone under my wings (whether they like it or not...heheee) and cluck over them and worry over them. Love 'em all!

We live in Oregon, not far from Portland. I'm a native and Rich was born in St. MN. He is my caregiver and so very patient with me. I'm a very lucky woman to have him.

Glad to have you with us Ken. I'll watch for your posts.

Now, off to bed/TV for me.

Sleep well tonight.

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]

Thank you for sharing - You seem like a very special lady! Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 7:25:08 PMSubject: Re: Re: Recently diagnosed

Ken..your wonderful family has certainly circled the wagons around you and I'm glad you have good support. Hopefully the kids are not scattered to far away.

I'm 70....goodness, how I got here I'll never know!. I'm married to a wonderful man named Rich, we have 7 kids between us although unfortunately, close to only 2 of them. Long stories. A daughter lives about .5 miles from me and the other one is about 30 miles.

I've been on the board nearly 3 years. When I first joined the board I was positive I would be dead within a month.

I'm kinda the mama-hen here. I tuck everyone under my wings (whether they like it or not...heheee) and cluck over them and worry over them. Love 'em all!

We live in Oregon, not far from Portland. I'm a native and Rich was born in St. MN. He is my caregiver and so very patient with me. I'm a very lucky woman to have him.

Glad to have you with us Ken. I'll watch for your posts.

Now, off to bed/TV for me.

Sleep well tonight.

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]

Ken

You are new here and doing what you can to learn about the disease and

how to live with it. I know you feel a bit lost and wonder what to say

and where to turn. We all were there. What is funny is that before long

you'll have totally forgotten being a newbie, a year from now you'll

feel like a board veteran and three years from now you'll feel like

you've been a member forever.

Life here won't be without some sadness as friends suffer and die.

However, that will be more than offset in watching friends live and

enjoy themselves and thrive in spite of the obstacles. You'll even find

yourself doing a double take as you see how the attitudes of so many

seem inconsistent with their physical condition. You'll find those you

connect to best and consider mentors. I've found those ahead of me who I

consider such marvelous role models. Hopefully gaining knowledge will

make you feel a little more in control of your life.

> > >

> > > 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,

I am very humbled to be included in this exceptionally caring and supportive "family." You're right - I'm definitely a newbie to this whole thing. I joined so I could learn - I didn't expect the strong emotional support I feel. I had never heard of IPF or Interstitial Lung Disease until recently when I became a victim. Now I want others to know and a cure found! Whatever I can do to that end I want to do! Thanks again!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 9:03:35 PMSubject: Re: Recently diagnosed

KenYou are new here and doing what you can to learn about the disease andhow to live with it. I know you feel a bit lost and wonder what to sayand where to turn. We all were there. What is funny is that before longyou'll have totally forgotten being a newbie, a year from now you'llfeel like a board veteran and three years from now you'll feel likeyou've been a member forever.Life here won't be without some sadness as friends suffer and die.However, that will be more than offset in watching friends live andenjoy themselves and thrive in spite of the obstacles. You'll even findyourself doing a double take as you see how the attitudes of so manyseem inconsistent with their physical condition. You'll find those youconnect to best and consider mentors. I've found those ahead of me who Iconsider such marvelous role models. Hopefully gaining knowledge willmake you feel a little more in control

of your life.> > >> > > 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,

I am very humbled to be included in this exceptionally caring and supportive "family." You're right - I'm definitely a newbie to this whole thing. I joined so I could learn - I didn't expect the strong emotional support I feel. I had never heard of IPF or Interstitial Lung Disease until recently when I became a victim. Now I want others to know and a cure found! Whatever I can do to that end I want to do! Thanks again!

Ken

To: Breathe-Support Sent: Thursday, February 5, 2009 9:03:35 PMSubject: Re: Recently diagnosed

KenYou are new here and doing what you can to learn about the disease andhow to live with it. I know you feel a bit lost and wonder what to sayand where to turn. We all were there. What is funny is that before longyou'll have totally forgotten being a newbie, a year from now you'llfeel like a board veteran and three years from now you'll feel likeyou've been a member forever.Life here won't be without some sadness as friends suffer and die.However, that will be more than offset in watching friends live andenjoy themselves and thrive in spite of the obstacles. You'll even findyourself doing a double take as you see how the attitudes of so manyseem inconsistent with their physical condition. You'll find those youconnect to best and consider mentors. I've found those ahead of me who Iconsider such marvelous role models. Hopefully gaining knowledge willmake you feel a little more in control

of your life.> > >> > > 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 Ken...

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> >>