Fw: Scare today

[Guest guest]

Subject: Scare todayTo: Breathe-Support@...Date: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable.. The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Prayers are on the way.. God Bless you both. 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."  --- On Tue, 2/17/09, Elisa <elisacole (AT) yahoo (DOT) com> wrote:From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support (AT) yahoo (DOT) comDate: Tuesday, February 17, 2009, 4:01 PM   Hello friends,      I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital.  All I could think of was heart attack because he has been under such stress lately.  With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually.  It turns out it was a kidney stone.  However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy!  She said they'd find a way to check him out.  Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week.  I am now looking for a good person to get into right now.  I have nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber.  It's just so sad, because I think it's preventable..  The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs.  Please say a prayer for my husband, Barry Cole. Thanks! Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Elissa

i will definitely keep your husband in my thoughts and hope he gets the proper bowel studies real soon

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Fw: Scare todayTo: Breathe-Support Date: Tuesday, February 17, 2009, 5:04 PM

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Elisa, I am so sorry you are all under such stress. Barry will be added to my prayers and thoughts along with you, your mother in law and his business. Everything is so intertwined these days. Love each other, receive love and take care of everyone's health. Margaret

To: Breathe-Support Sent: Tuesday, February 17, 2009 1:04:24 PMSubject: Fw: Scare today

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Elisa,

I can only imagine the stress that you are under right now. You and your husband are in my prayers. Please keep us posted.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"May you never take one single breath for granted"

To: Breathe-Support Sent: Tuesday, February 17, 2009 5:04:24 PMSubject: Fw: Scare today

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

You and your family will be in my prayers.

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Tuesday, February 17, 2009 5:04:24 PMSubject: Fw: Scare today

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Elisa, I will be praying for you both. I'm sure it's just as

stressfull for you to see your husband going through all of this as

it is for him.

33 FL

IPF dx 1/06

>

> From: Elisa

> Subject: Scare today

> To: Breathe-Support@...

> Date: Tuesday, February 17, 2009, 4:01 PM

>

>

>

>

>

>

>

>  

>   Hello friends,

>  

>      I could use some prayers and comfort today. I was called at

school by husband's coworker, saying husband was in horrible pain and

he'd taken him to hospital.  All I could think of was heart attack

because he has been under such stress lately.  With me sickly, his 81

year old mom very needy, and his business hurting very badly, he is

stressed continually.  It turns out it was a kidney stone.  However,

I whispered to one of the nurses that his father had died of colon

cancer, his brother had 36 polops removed, and he had never had a

colonoscopy!  She said they'd find a way to check him out.  Well,

they did a blood test and he is anemic. They then tested stool for

blood. It turned out positive. They told him it probably wasn't a

life-threatening emergency, but that he needed to see a gastro person

within a week.  I am now looking for a good person to get into right

now.  I have nagged him continually, as have our kids and his brother,

> about getting a regular checkup and about eating a good diet of

food with fiber.  It's just so sad, because I think it's

preventable..  The good news is that he didn't cancel his insurance a

month ago when thinking of how to save his business costs.  Please

say a prayer for my husband, Barry Cole. Thanks!

>  

> Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

>

[Guest guest]

Elisa....I'm very glad that Barry is getting the medical attention NOW that he needs. Prayers are already Heaven bound!

These are scary symptoms ok but thank God it brought him to medical attention...

I know you are worried. Just do today's stuff today and tomorrow's stuff tomorrow and so on. Keep us posted.

Love,

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

Scare todayTo: Breathe-Support (AT) yahoo (DOT) comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable.. The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Elisa

So sorry to hear that and will be thinking of you both. And a reminder

to not just all the men who need colonoscopies but all you women do as

well.

Please let us know as you know more and if there's anything you need,

even if its a driver for a colonoscopy or something, just let me know.

>

> From: Elisa elisacole@...

> Subject: Scare today

> To: Breathe-Support@...

> Date: Tuesday, February 17, 2009, 4:01 PM

>

>

>

>

>

>

>

>

> Hello friends,

>

> I could use some prayers and comfort today. I was called at

school by husband's coworker, saying husband was in horrible pain and

he'd taken him to hospital. All I could think of was heart attack

because he has been under such stress lately. With me sickly, his 81

year old mom very needy, and his business hurting very badly, he is

stressed continually. It turns out it was a kidney stone. However, I

whispered to one of the nurses that his father had died of colon cancer,

his brother had 36 polops removed, and he had never had a colonoscopy!

She said they'd find a way to check him out. Well, they did a blood

test and he is anemic. They then tested stool for blood. It turned out

positive. They told him it probably wasn't a life-threatening emergency,

but that he needed to see a gastro person within a week. I am now

looking for a good person to get into right now. I have nagged him

continually, as have our kids and his brother,

> about getting a regular checkup and about eating a good diet of food

with fiber. It's just so sad, because I think it's preventable.. The

good news is that he didn't cancel his insurance a month ago when

thinking of how to save his business costs. Please say a prayer for my

husband, Barry Cole. Thanks!

>

> Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

>

[Guest guest]

Elisa...I'm so sorry to hear of your concerns about your hubby.....I'll be keeping you both in my thoughts & watching for news.....OMG its so hard to see around corners isn't it!

GIO> > Subject: Scare today> To: Breathe-Support@...> Date: Tuesday, February 17, 2009, 4:01 PM> > > > Hello friends,> > I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable.. The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!> > Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)>

[Guest guest]

Thank you, Sher! Very good advice that I plan to follow.

Love, Elisa

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Thanks, sweet lady. We're already feeling less anxiety knowing prayers are being said.

Love, Elisa

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get

into right now. I have nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Thanks for all of the kind words and prayers. It sure feels like family here!

Love, Elisa

From: Elisa <elisacole (AT) yahoo (DOT) com>Subject: Scare todayTo: Breathe-Support@ yahoo.comDate: Tuesday, February 17, 2009, 4:01 PM

Hello friends,

I could use some prayers and comfort today. I was called at school by husband's coworker, saying husband was in horrible pain and he'd taken him to hospital. All I could think of was heart attack because he has been under such stress lately. With me sickly, his 81 year old mom very needy, and his business hurting very badly, he is stressed continually. It turns out it was a kidney stone. However, I whispered to one of the nurses that his father had died of colon cancer, his brother had 36 polops removed, and he had never had a colonoscopy! She said they'd find a way to check him out. Well, they did a blood test and he is anemic. They then tested stool for blood. It turned out positive. They told him it probably wasn't a life-threatening emergency, but that he needed to see a gastro person within a week. I am now looking for a good person to get into right now. I have

nagged him continually, as have our kids and his brother, about getting a regular checkup and about eating a good diet of food with fiber. It's just so sad, because I think it's preventable. . The good news is that he didn't cancel his insurance a month ago when thinking of how to save his business costs. Please say a prayer for my husband, Barry Cole. Thanks!

Elisa( LIP with PF, Sjogren's, Raynaud's Apr. '08)

[Guest guest]

Oh Bruce, please don't use the word "driver" in the same sentence with Colonoscopy--LOL.

Hi, Elisa,

Tell Barry that I put off the Colonoscopy till I was 60 yrs. old because of all the stories the guys would tell. I finally had it done and the worst part was drinking that gallon of junk the day before. I went to the hospital the next day, they played some nice mellow music the Dr. did his job and I was out of the hospital in a couple hours and didn't even know what happened,-----no pain, discomfort or anything.

I told the Dr. the next time I get it done I would like two song played during the exam,

"Strangers in the night" and "Only Fools Rush in," he said its a date-------uuhhhhhmmm I'm not quite sure what he ment by that,--- but tell Barry it was OK no big deal.

[Guest guest]

Oh Bruce, please don't use the word " driver " in the same sentence with Colonoscopy--LOL. That is too funny! When I had mine done I told the doc he was

boldly going where no man had gone before.jon50, sarcoidosis 1/9 -- A little nonsense now and then is relished by the wisest men.

[Guest guest]

Jon

Well, by the fifth time or so you have it done, you think nothing of it.

Only issue is drinking all the stuff and, even there, to me its just the

quantity. If it was water or lemonade or anything, I'd have a problem

drinking that quantity in that time.

>

> > Oh Bruce, please don't use the word " driver " in the same sentence

with

> > Colonoscopy--LOL.

> >

>

>

>

>

>

> That is too funny! When I had mine done I told the doc he was

> boldly going where no man had gone before.

>

> jon

> 50, sarcoidosis 1/9

> --

> A little nonsense now and then is relished by the wisest men.

>

[Guest guest]

Folks...

I was diagnosed with ipf about a year ago. Have lost about 10-20% of lung function but still exercise 3-4 times a week with heart rate at 110 along with strength training. I am 70 years old, normal weight and perfect blood tests, hcl etc. Only problem is ipf (big) . I dont know what to expect when. That is, some day I will be on qxygen, then I will be in hospice care when oxygen is at max, etc. im guessing that as I need more oxygen I will get weaker and need wheelchair etc. Believe it or not Im trying to get some sort of fix on the progression of the disease and the lifestyle or lack of it that it might afford.My pulmonologist just says everyone is different ,but there must be some norms I know what cancer is like cuz I've been thru it with 3 family members.Anyone know where to search re ipf ?

thanks and good luck to you all.

Andy

Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 9:51 AM

JonWell, by the fifth time or so you have it done, you think nothing of it.Only issue is drinking all the stuff and, even there, to me its just thequantity. If it was water or lemonade or anything, I'd have a problemdrinking that quantity in that time.>> > Oh Bruce, please don't use the word "driver" in the same sentencewith> > Colonoscopy- -LOL.> >>>>>>> That is too funny! When I had mine done I told the doc he was> boldly going where no man had gone before.>> jon> 50, sarcoidosis 1/9> --> A little nonsense now and then is relished by the wisest

men.>

[Guest guest]

Well, first there are many different forms of PF or Interstitial Lung

Diseases. I don't know how you were diagnosed or if the form was

confirmed definitively.

You are certainly in an early stage at this point and enjoy your health.

Now, I also wanted to know and to plan. I have UIP. Many here have NSIP

and other forms which may respond to treatment and move slower.

So, in general. We don't know how quickly to expect progression or

whether it will come in gradual changes or some more severe changes. The

best thing you can do to keep it from progressing too severely too

quickly is to avoid germs and at the least sign of any problems, get

medical attention. Rapid progression is often through complications such

an pneumonia which can often be avoided. I would certainly hope you are

getting flu shots and have had your pneumonia shot.

Now, I went on oxygen at diagnosis. You'll hear moans and groans about

oxygen. If you take that attitude it may limit you. However, it's not

limited me. I get out and about. I travel. I can do pretty much what I

want, just not as long or as hard. I have certain things I can't do but

most of those I can live fine without. Normally you'll find first the

need for oxygen when sleeping and when exerting yourself. Maybe 2 lpm at

first. Then you may progress where you're requiring 2 lpm at rest and 3

or 4 or 5 on exertion. The important thing for me was to understand I

can have a lot more. Later it will be 6 or 8. Eventually as you hit 10

or more it becomes more difficult to get enough.

At first you can take care of yourself as you always have. Then you hit

a period in which there are certain things you need help for. I don't

clean my own home anymore. I also don't carry heavy items (have a very

nice cart for that). My mobility at this point is still good and I get

out every day.

Later, there are more things you need assistance on and getting out

becomes more difficult. Just because it takes more time and effort

though is no reason to stop it. You mention a chair. Well, I do own a

powerchair although rarely use it yet. But, I know the time is I'll need

it to enjoy getting out. If I went to Disneyworld I'd use it today. Or

to the zoo. I used it to explore the Riverfront in Chattanooga last

year. I know that ultimately I'll need it on more of my daily outings.

Now, you want to guard against other things such as Pulmonary

Hypertension. With PF only, most will eventually reach a stage over 10

lpm and with no mobility. But, the good part is your brain is still

functioning well and you can live relatively free from pain due to

hospice. At this point you're looking for pallative care. Knowing whats

available provides me great comfort. You get someone experienced helping

you and the amount of morphine necessary to relieve the pain.

As to lifestyle, perhaps not what you dreamed of for yourself, but it

can be very full. Develop things you enjoy (such as this forum) that

don't require as much mobility. Make online friends or play cards

online. Meanwhile get out as much as you can but have interests that

when you can't get out you can still enjoy. I'm more advanced than you

(my lung function was below 50% when I was diagnosed and is in the lower

40's depending on what measurement you use). I'm on anywhere from no

oxygen sitting sometimes to 2 lpm sleeping to 3 lpm moving around the

house to 4 lpm out to 5 lpm on the treadmill. My life is good. My

quality of life is good.

I take comfort in seeing those further along than I am still enjoying

their lives. Not perfect. Not what they wished. But enjoying. Whether

its sitting on the porch in a florida breeze or the latest project in

Oregon or traveling. I also see those who are in hospice who are

comfortable. They still are sharing time with their husbands and kids

and grandkids and friends. Their hours per day they are doing so may be

decreasing but its still there. Read one or two of Lou's recent

posts and you'll see a woman very much alive with hospice. It's not just

the morphine making her a bit crazy and so lovable though. She always

was. She has a hospice nurse she very much likes and her dog and at

night her husband and family other times.

What this board is about more than anything is learning to live with the

disease. For you at this point thats not difficult. But, you can do it

at all stages.

You didn't know before the diagnosis how long or what kind of life was

left. You still don't. Use the diagnosis to tell you to focus on

enjoying every day as much as possible. If there are things you

especially want to do in your life, do them now. Don't say, I'll do that

in a few years. A few years often never comes as we can continue to put

it off. I have done things since diagnosis that I know I would have put

off forever without.

> >

> > > Oh Bruce, please don't use the word " driver " in the same sentence

> with

> > > Colonoscopy- -LOL.

> > >

> >

> >

> >

> >

> >

> > That is too funny! When I had mine done I told the doc he was

> > boldly going where no man had gone before.

> >

> > jon

> > 50, sarcoidosis 1/9

> > --

> > A little nonsense now and then is relished by the wisest men.

> >

>

[Guest guest]

Andy

welcome to the group, sorry you need us, but glad you found us

for info about the disease check out the pulmonary fibrosis foundation website, the coalition for pulmonary fibrosis website, and just do a search for pulmonary fibrosis

there is a lot of info

and there are a lot of unknowns

all of our situations are different

most of us are O2 24/7 at various lpm's (liters per minute)

some common things are the dry cough, tiredness, decent SAT levels while sitting that drop as soon as we become active

most people here recommend buying your own oximeter (the thing that goes on your finger to measure O2 and heart rate)

someone on the site will post an address for you

hope you are near a teaching hospital that specializes in interstitial lung diseases

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 10:58 AM

Folks...

I was diagnosed with ipf about a year ago. Have lost about 10-20% of lung function but still exercise 3-4 times a week with heart rate at 110 along with strength training. I am 70 years old, normal weight and perfect blood tests, hcl etc. Only problem is ipf (big) . I dont know what to expect when. That is, some day I will be on qxygen, then I will be in hospice care when oxygen is at max, etc. im guessing that as I need more oxygen I will get weaker and need wheelchair etc. Believe it or not Im trying to get some sort of fix on the progression of the disease and the lifestyle or lack of it that it might afford.My pulmonologist just says everyone is different ,but there must be some norms I know what cancer is like cuz I've been thru it with 3 family members.Anyone know where to search re ipf ?

thanks and good luck to you all.

Andy

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Fw: Scare todayTo: Breathe-Support@ yahoogroups. comDate: Wednesday, February 18, 2009, 9:51 AM

JonWell, by the fifth time or so you have it done, you think nothing of it.Only issue is drinking all the stuff and, even there, to me its just thequantity. If it was water or lemonade or anything, I'd have a problemdrinking that quantity in that time.>> > Oh Bruce, please don't use the word "driver" in the same sentencewith> > Colonoscopy- -LOL.> >>>>>>> That is too funny! When I had mine done I told the doc he was> boldly going where no man had gone before.>> jon> 50, sarcoidosis 1/9> --> A little nonsense now and then is relished by the wisest

men.>

[Guest guest]

Well I guess I'll share my secret...

I'm known as a polyp grower...isn't that gross? But ELISA, tell Barry the worst part of the scope is the prep, just like wrote.

Here's another secret...plaster Vaseline all around the ummm, ahhhh, the strategic

fanny-part right at the get go. Ohhhh, believe you me, it makes a difference.

I have a Colonoscopy every 4 years to check out how my "garden grows" :<(

Nothin' to the procedure but the prep is tough, no getting around it. Yuck.

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

Re: Fw: Scare today

Oh Bruce, please don't use the word "driver" in the same sentence with Colonoscopy--LOL.

Hi, Elisa,

Tell Barry that I put off the Colonoscopy till I was 60 yrs. old because of all the stories the guys would tell. I finally had it done and the worst part was drinking that gallon of junk the day before. I went to the hospital the next day, they played some nice mellow music the Dr. did his job and I was out of the hospital in a couple hours and didn't even know what happened,-----no pain, discomfort or anything.

I told the Dr. the next time I get it done I would like two song played during the exam,

"Strangers in the night" and "Only Fools Rush in," he said its a date-------uuhhhhhmmm I'm not quite sure what he ment by that,--- but tell Barry it was OK no big deal.

[Guest guest]

Bruce..

Your comments are exactly what I was/am looking for. Thank you!!!. I would imagine they would be helpful to anyone with PF. I think I will print your comments and give a copy to my pulmonologist. Thanks again and I will try to stay in touch,

andy

Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 11:29 AM

Well, first there are many different forms of PF or Interstitial LungDiseases. I don't know how you were diagnosed or if the form wasconfirmed definitively.You are certainly in an early stage at this point and enjoy your health.Now, I also wanted to know and to plan. I have UIP. Many here have NSIPand other forms which may respond to treatment and move slower.So, in general. We don't know how quickly to expect progression orwhether it will come in gradual changes or some more severe changes. Thebest thing you can do to keep it from progressing too severely tooquickly is to avoid germs and at the least sign of any problems, getmedical attention. Rapid progression is often through complications suchan pneumonia which can often be avoided. I would certainly hope you aregetting flu shots and have had your pneumonia shot.Now, I went on oxygen at diagnosis. You'll hear moans

and groans aboutoxygen. If you take that attitude it may limit you. However, it's notlimited me. I get out and about. I travel. I can do pretty much what Iwant, just not as long or as hard. I have certain things I can't do butmost of those I can live fine without. Normally you'll find first theneed for oxygen when sleeping and when exerting yourself. Maybe 2 lpm atfirst. Then you may progress where you're requiring 2 lpm at rest and 3or 4 or 5 on exertion. The important thing for me was to understand Ican have a lot more. Later it will be 6 or 8. Eventually as you hit 10or more it becomes more difficult to get enough.At first you can take care of yourself as you always have. Then you hita period in which there are certain things you need help for. I don'tclean my own home anymore. I also don't carry heavy items (have a verynice cart for that). My mobility at this point is still good and I

getout every day.Later, there are more things you need assistance on and getting outbecomes more difficult. Just because it takes more time and effortthough is no reason to stop it. You mention a chair. Well, I do own apowerchair although rarely use it yet. But, I know the time is I'll needit to enjoy getting out. If I went to Disneyworld I'd use it today. Orto the zoo. I used it to explore the Riverfront in Chattanooga lastyear. I know that ultimately I'll need it on more of my daily outings.Now, you want to guard against other things such as PulmonaryHypertension. With PF only, most will eventually reach a stage over 10lpm and with no mobility. But, the good part is your brain is stillfunctioning well and you can live relatively free from pain due tohospice. At this point you're looking for pallative care. Knowing whatsavailable provides me great comfort. You get someone experienced

helpingyou and the amount of morphine necessary to relieve the pain.As to lifestyle, perhaps not what you dreamed of for yourself, but itcan be very full. Develop things you enjoy (such as this forum) thatdon't require as much mobility. Make online friends or play cardsonline. Meanwhile get out as much as you can but have interests thatwhen you can't get out you can still enjoy. I'm more advanced than you(my lung function was below 50% when I was diagnosed and is in the lower40's depending on what measurement you use). I'm on anywhere from nooxygen sitting sometimes to 2 lpm sleeping to 3 lpm moving around thehouse to 4 lpm out to 5 lpm on the treadmill. My life is good. Myquality of life is good.I take comfort in seeing those further along than I am still enjoyingtheir lives. Not perfect. Not what they wished. But enjoying. Whetherits sitting on the porch in a florida breeze or the latest

project inOregon or traveling. I also see those who are in hospice who arecomfortable. They still are sharing time with their husbands and kidsand grandkids and friends. Their hours per day they are doing so may bedecreasing but its still there. Read one or two of Lou's recentposts and you'll see a woman very much alive with hospice. It's not justthe morphine making her a bit crazy and so lovable though. She alwayswas. She has a hospice nurse she very much likes and her dog and atnight her husband and family other times.What this board is about more than anything is learning to live with thedisease. For you at this point thats not difficult. But, you can do itat all stages.You didn't know before the diagnosis how long or what kind of life wasleft. You still don't. Use the diagnosis to tell you to focus onenjoying every day as much as possible. If there are things youespecially want

to do in your life, do them now. Don't say, I'll do thatin a few years. A few years often never comes as we can continue to putit off. I have done things since diagnosis that I know I would have putoff forever without.> >> > > Oh Bruce, please don't use the word "driver" in the same sentence> with> > > Colonoscopy- -LOL.> > >> >> >> >> >> >> > That is too funny! When I had mine done I told the doc he was> > boldly going where no man had gone before.> >> > jon> > 50, sarcoidosis 1/9> > --> > A little nonsense now and then is relished by the wisest men.> >>

[Guest guest]

Joyce..

I am in Cincinnati where they have pulmonary group thru Univ hospital and it is a teaching hospital;however, I lived in Chicago area and would expect that Univ of chicago and Northwestern Memorial would be prremium spots. Since there is no cure its not the same as cancer, where it really matters.Thank you for the info

andy

From: Bruce Moreland <brucemoreland@ gmail.com>Subject: Re: Fw: Scare todayTo: Breathe-Support@ yahoogroups. comDate: Wednesday, February 18, 2009, 9:51 AM

JonWell, by the fifth time or so you have it done, you think nothing of it.Only issue is drinking all the stuff and, even there, to me its just thequantity. If it was water or lemonade or anything, I'd have a problemdrinking that quantity in that time.>> > Oh Bruce, please don't use the word "driver" in the same sentencewith> > Colonoscopy- -LOL.> >>>>>>> That is too funny! When I had mine done I told the doc he was> boldly going where no man had gone before.>> jon> 50, sarcoidosis 1/9> --> A little nonsense now and then is relished by the wisest

men.>

[Guest guest]

Just know there is no certainty of what will happen or when. The thing I

just had to do for myself very early was imagine each stage and how I

would cope with it. Many can take things more as they come. But once I

understood, then I felt better prepared. It made decisions all along the

way easier too. It also gave me a greater sense of control. I can't

control the disease but I can control how I live with it.

> > >

> > > > Oh Bruce, please don't use the word " driver " in the same

sentence

> > with

> > > > Colonoscopy- -LOL.

> > > >

> > >

> > >

> > >

> > >

> > >

> > > That is too funny! When I had mine done I told the doc he was

> > > boldly going where no man had gone before.

> > >

> > > jon

> > > 50, sarcoidosis 1/9

> > > --

> > > A little nonsense now and then is relished by the wisest men.

> > >

> >

>

[Guest guest]

Actually it does still really matter that the diagnosis is complete and

you understand it. I have been to the University of Chicago. We have

many others who have been to other IPF Centers of Excellence of which

there are now 16. They use a similar protocol. They can give you a

better understanding of the disease. In some cases, they find an

underlying autoimmune disease and in treating it may help manage the

progression of the PF. I found it more than worth the time and effort of

taking a day for a thorough second opinion from those who deal with it

every day.

> >

> > > Oh Bruce, please don't use the word " driver " in the same sentence

> with

> > > Colonoscopy- -LOL.

> > >

> >

> >

> >

> >

> >

> > That is too funny! When I had mine done I told the doc he was

> > boldly going where no man had gone before.

> >

> > jon

> > 50, sarcoidosis 1/9

> > --

> > A little nonsense now and then is relished by the wisest men.

> >

>

[Guest guest]

I am trying to understand what is going on. Ever since I had my Biopsy, I have not really had the dry cough. My original Biopsy stated that I had BOOP. After I checked with a second Doctor, it was determined to be be IPF. I have been on 60 mg's of Prednisone since September. Starting in October the Doctor has been reducing my Prednisone by 5mg's per month. One thing I have noticed is that I cannot seem to retain any fluids. I have to urinate constantly. This is more frequent in the morning and tapering off at night. Is this a direct side effect to the Prednisone? Recently I have found that I will just be lying there with my Oxygen Sauration level at 92-93 but my heart rate is runnung at 110. My sleeping heart rate is usually in the 60's. Today I get winded just moving around. On Tuesday I went grocery shooping and was walking

around for at least 1/2 hour. I was not gasping for air, and once I sat down I recovered within 3 minutes. Any comments appreciated.

Subject: Re: Fw: Scare todayTo: Breathe-Support Date: Wednesday, February 18, 2009, 4:29 PM

Well, first there are many different forms of PF or Interstitial LungDiseases. I don't know how you were diagnosed or if the form wasconfirmed definitively.You are certainly in an early stage at this point and enjoy your health.Now, I also wanted to know and to plan. I have UIP. Many here have NSIPand other forms which may respond to treatment and move slower.So, in general. We don't know how quickly to expect progression orwhether it will come in gradual changes or some more severe changes. Thebest thing you can do to keep it from progressing too severely tooquickly is to avoid germs and at the least sign of any problems, getmedical attention. Rapid progression is often through complications suchan pneumonia which can often be avoided. I would certainly hope you aregetting flu shots and have had your pneumonia shot.Now, I went on oxygen at diagnosis. You'll hear moans

and groans aboutoxygen. If you take that attitude it may limit you. However, it's notlimited me. I get out and about. I travel. I can do pretty much what Iwant, just not as long or as hard. I have certain things I can't do butmost of those I can live fine without. Normally you'll find first theneed for oxygen when sleeping and when exerting yourself. Maybe 2 lpm atfirst. Then you may progress where you're requiring 2 lpm at rest and 3or 4 or 5 on exertion. The important thing for me was to understand Ican have a lot more. Later it will be 6 or 8. Eventually as you hit 10or more it becomes more difficult to get enough.At first you can take care of yourself as you always have. Then you hita period in which there are certain things you need help for. I don'tclean my own home anymore. I also don't carry heavy items (have a verynice cart for that). My mobility at this point is still good and I

getout every day.Later, there are more things you need assistance on and getting outbecomes more difficult. Just because it takes more time and effortthough is no reason to stop it. You mention a chair. Well, I do own apowerchair although rarely use it yet. But, I know the time is I'll needit to enjoy getting out. If I went to Disneyworld I'd use it today. Orto the zoo. I used it to explore the Riverfront in Chattanooga lastyear. I know that ultimately I'll need it on more of my daily outings.Now, you want to guard against other things such as PulmonaryHypertension. With PF only, most will eventually reach a stage over 10lpm and with no mobility. But, the good part is your brain is stillfunctioning well and you can live relatively free from pain due tohospice. At this point you're looking for pallative care. Knowing whatsavailable provides me great comfort. You get someone experienced

helpingyou and the amount of morphine necessary to relieve the pain.As to lifestyle, perhaps not what you dreamed of for yourself, but itcan be very full. Develop things you enjoy (such as this forum) thatdon't require as much mobility. Make online friends or play cardsonline. Meanwhile get out as much as you can but have interests thatwhen you can't get out you can still enjoy. I'm more advanced than you(my lung function was below 50% when I was diagnosed and is in the lower40's depending on what measurement you use). I'm on anywhere from nooxygen sitting sometimes to 2 lpm sleeping to 3 lpm moving around thehouse to 4 lpm out to 5 lpm on the treadmill. My life is good. Myquality of life is good.I take comfort in seeing those further along than I am still enjoyingtheir lives. Not perfect. Not what they wished. But enjoying. Whetherits sitting on the porch in a florida breeze or the latest

project inOregon or traveling. I also see those who are in hospice who arecomfortable. They still are sharing time with their husbands and kidsand grandkids and friends. Their hours per day they are doing so may bedecreasing but its still there. Read one or two of Lou's recentposts and you'll see a woman very much alive with hospice. It's not justthe morphine making her a bit crazy and so lovable though. She alwayswas. She has a hospice nurse she very much likes and her dog and atnight her husband and family other times.What this board is about more than anything is learning to live with thedisease. For you at this point thats not difficult. But, you can do itat all stages.You didn't know before the diagnosis how long or what kind of life wasleft. You still don't. Use the diagnosis to tell you to focus onenjoying every day as much as possible. If there are things youespecially want

to do in your life, do them now. Don't say, I'll do thatin a few years. A few years often never comes as we can continue to putit off. I have done things since diagnosis that I know I would have putoff forever without.> >> > > Oh Bruce, please don't use the word "driver" in the same sentence> with> > > Colonoscopy- -LOL.> > >> >> >> >> >> >> > That is too funny! When I had mine done I told the doc he was> > boldly going where no man had gone before.> >> > jon> > 50, sarcoidosis 1/9> > --> > A little nonsense now and then is relished by the wisest men.> >>