Re: New to group

January 14, 2006

Hi Jude

Welcome

to the IPF support group. Sorry to hear about your boyfriend's

diagnoses. I also had the surgical lung biopsy (at Mass General) and

can tell you while the initial recovery from the surgery is pretty

fast, he can expect lingering effects for the next couple of months

(numbness, little jolts of a share pain, general soreness) nothing big

deal but it was a surprise to me and I learned it was normal and it

did finally go away.

I also

had GERD for many years and had it under control with Prylosec for the

past 10 years. Shortly after my diagnoses I began experiencing reflux

again and my pulmonologist double my dosage. My new problems

disappeared. She also put me on NAC and a prescription for Advair (the

inhaler). I have found both to be very helpful. I have the breath

tests every 3 month and the Cat scans every 6 months. There has been

minor but no significant change in my test results over the past 9

months. Mentally it has taken every bit of that time to come to terms

with this diagnoses. My twin brother died from this (and other

complications) six years ago.

It's a

difficult road for both of you. But it can also bring you even closer

and make your time together more meaningful and more appreciated. I

wish you both my best. Know that your not alone, there are more than

80,000 people in the United States with this awful disease and we're

very lucky to have such wonderful medical facilities so close

by. Tim

My boyfriend was

diagnosed with IPF less than 2 weeks ago. He's just

turned 50 and has led an incredibly active life as a whitewater

boater,

skier, hiker, dancer and fanatical exerciser. He's a contractor

and in

now only able to work about 3 - 4 hours per day. Looking back, he

thinks

he's had this for many years, but it was just this past August that

he

really began to notice he was having some breathing problems when he

ran

up Mt Monadnock, a local mountain with a worldwide reputation of

being

the most climbed in the world after Mt Fuji, with his daughter,

something he's done with his kids since they were babes in

backpacks.

For the first time, she beat him and gave him a hard time about

getting

old. His PCP ordered a CT scan and when that was done, he was

sent to

the local specialists. Boston is only an hour and a half away,

so he

chose to go where some of the best medical care in the world

exists

rather than in a small state capital (Concord, NH). His

pulmonologist

at Beth Israel Hospital in Boston, and the surgeon who did the

lung

biopsy, are amazing! They have encourage his to find whatever

works for

him. He's never been a smoker, but his mother died

of lung cancer in

1963 and we can't help but wonder if that may have been a

misdiagnosis

and she, too, had IPF. It seems there may be a connection with

GERD and

IPF. Has anyone had any experience with that? He has had

reflux issues

for nearly 30 years after a stint in the Peace Corps in the

Central

Pacific that included bouts of dysentary and giardia. As soon as

he

began taking the med for GERD early this week, be began to feel he

was

getting more out of his lung capacity.

Jude

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January 14, 2006

>Hi Judy,

When I read your post I got shivers up my spine. Your boyfriend and

my husband could be the same person (hopefully they aren't!). My

husband had acid reflux for many years. He was incredibly strong and

athletic, noticing his shortness of breath when he was hiking with a

group of friends in October 2001 (at the age of 50). He was always

the first one up the hill and got a lot of ribbing when the others

beat him. He had a fundiplication for his acid reflux that previous

April. At that time the doctor heard some crackling in his lungs and

said they would keep an eye on it. It took until July 2003 before

the doctors were concerned enough with the accumulation of scar

tissue in his lungs to order a lung biopsy. The results came back

that he had a pneumonia of unknown origin. The doctors he was going

to at that time seemed more concerned with treating the symtoms and

not really concerned about finding out the cause. It wasn't until

February 2004 that he was referred to a top-knotch pulmonary doctor

who is a reknown transplant surgeon in Seattle. Now it is a waiting

game. I asked about acid reflux because I read about it on the

internet. The doctor agrees that is the probable cause. Some things

you might find useful--My husband had a tube with sensors to test

the PH level in his stomach. He wore this for a 24 hour period.

Although he had the fundiplication, his acid levels are 3 times what

they should be. He felt his acid reflux had been cured, most likely

the nerve endings were shot and he could no longer feel the acid

burn. Now we elevate the bed and in 2 weeks he is going in to a

sleep clinic. His snoring has gotten incredibly bad the past few

years. Although many people with his lung capacity test numbers are

on oxygen 24/7, my husband only uses it during exhersion. His doctor

refers to him as atypical. Sorry about the long letter, but feel

free to email me any time. Because of the similarities in our men's

illnesses, I feel as if I want to stay in touch.

My best to you both,

> My boyfriend was diagnosed with IPF less than 2 weeks ago. He's

just

> turned 50 and has led an incredibly active life as a whitewater

boater,

> skier, hiker, dancer and fanatical exerciser. He's a contractor

and in

> now only able to work about 3 - 4 hours per day. Looking back, he

thinks

> he's had this for many years, but it was just this past August

that he

> really began to notice he was having some breathing problems when

he ran

> up Mt Monadnock, a local mountain with a worldwide reputation of

being

> the most climbed in the world after Mt Fuji, with his daughter,

> something he's done with his kids since they were babes in

backpacks.

> For the first time, she beat him and gave him a hard time about

getting

> old. His PCP ordered a CT scan and when that was done, he was

sent to

> the local specialists. Boston is only an hour and a half away, so

he

> chose to go where some of the best medical care in the world

exists

> rather than in a small state capital (Concord, NH). His

pulmonologist

> at Beth Israel Hospital in Boston, and the surgeon who did the

lung

> biopsy, are amazing! They have encourage his to find whatever

works for

> him. He's never been a smoker, but his mother died of lung

cancer in

> 1963 and we can't help but wonder if that may have been a

misdiagnosis

> and she, too, had IPF. It seems there may be a connection with

GERD and

> IPF. Has anyone had any experience with that? He has had reflux

issues

> for nearly 30 years after a stint in the Peace Corps in the

Central

> Pacific that included bouts of dysentary and giardia. As soon as

he

> began taking the med for GERD early this week, be began to feel he

was

> getting more out of his lung capacity.

> Jude

>

March 21, 2006

Barb wrote: why is IPF worse than PF?

Idiopathic PF means that there is no known cause.

PF is when there is a cause. The cause for my PF is Lupus. There are many diseases, especially connective tissue diseases that cause PF. When there is a cause then the docs can treat that cause and sometimes control the fibrosis.

Search online. Lots of answers available.

Hugs,

Joyce

> Hi to everyone, so happy to have found this group! I have been reading > what you all wrote. I too have so many questions. I was told about > 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He > sent a respitory therapist who new more than him. God bless you all. > I'm on ox at night. My name is yvonne or some call me vonny. Looking > forward to chating with you. bye for now> > > > > > > > >

March 24, 2006

Joyce: How about praying and picking me out a lung dr. My stinks. I am having no treatment except ox. Barbjanne5303 wrote: Vonnie, You deserve better care than just being SENT HOME. If it is possible for you with insurance, etc. .... you should get a consult with another doc. "At first the Dr. did nothing. I had to insist" Hopefully, your insistence paid off. I know this may sound strange.....But, one day out of sheer terror and frustration, I sat down with my list of

pulmonary doctors and prayed for help. (By this time, I had been misdagnosed and mistreated for quite awhile) I chose a doc I had never heard of and made an appointment. He turned out to be the director of the Respiratory Department of a major hospital here. He got agressive right away. He sent me to a surgeon for open lung biopsy (some scraping,etc went along with that) and a new Rheumatologist. These docs have saved my life. That was 1997. I have fought this disease and have educated myself to the best of my ability to know how to fight. With God's help, I believe I have had years that I would not have had. I have learned so much already in the last few weeks on this website. Stay tuned and let us know how you are doing. WE CARE! Joyce >> Hi to everyone, so happy to have found this group! I have been reading > what you all wrote. I too have so many questions. I was told about > 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He > sent a respitory therapist who new more than him. God bless you all. > I'm on ox at night. My name is yvonne or some call me vonny. Looking > forward to chating with you. bye for now>

New Yahoo! Messenger with Voice. Call regular phones from your PC and save big.

March 24, 2006

Gordon: I really got surprised when I read your Letter to Vonnie. When it was discovered that I had IPF they also said I had a lot of enlarged Lymph Nodes. Then they said something about it being Idiopathic Intrastitial Pulmonary Fibrosis. I do have a lot of honey combing going on in my lungs. Do you think these dr's don't really know what they are doing? Comments anyone? I guess I may be grasping for hope. Barb debra beck wrote: Hi Vonnie ; In response to your question, this is the best that I can figure out. The difference in the diseases is based on

the results of the biopsies and thusly the prognosis. IPF is generally associated with the honeycombing of the lungs and has a poor prognosis. The IP is idio-pathic or unknown path or origin. In my case the biopsy showed honeycombing and the other good stuff which led to the initial diagnosis of IPF. But I also have enlarged lymphnodes so they changed the diagnosis to PF. But that really didn't seem to fit my situation so they changed the diagnosis to NSIP, non specific interstitial pneumonia, in other words " We don't know". There are actually quite a few different types of PF. DIP, BOOP, RB/ILD,etc,. The Pulmonary Fibrosis Foundation has a nice little handbook that briefly explains each of the diseases. I'm sure Leann (sp) co;uld get you a copy if you asked real nice and sent lots of cookies. Hope this helps. Gordon Re: New to group Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know? Barblittletorimommydrew wrote: Hi to everyone, so happy to have found this group! I have been reading what you all wrote. I too have so many questions. I was told about 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He sent a respitory therapist who new more than him. God bless you all. I'm on ox at night. My name is yvonne or some call me vonny. Looking forward to chating with you. bye for now Yahoo! MailBring photos to life! New PhotoMail makes sharing a breeze.

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March 24, 2006

Barb:

I'd hate to say they don't know what they're doing. I believe itis more a matter of everything being "new". I don't belive there has been a lot of research into fibrosis and all its variations. We have the honor of being the case studies to a large degree. It is our responsibility to educate and "motivate" these doctors.

Original Message -----

From: Barbara Soice

To: Breathe-Support

Sent: Friday, March 24, 2006 2:41 AM

Subject: Re: New to group

Gordon: I really got surprised when I read your Letter to Vonnie. When it was discovered that I had IPF they also said I had a lot of enlarged Lymph Nodes. Then they said something about it being Idiopathic Intrastitial Pulmonary Fibrosis. I do have a lot of honey combing going on in my lungs. Do you think these dr's don't really know what they are doing? Comments anyone? I guess I may be grasping for hope.

Barb

debra beck wrote:

Hi Vonnie ;

In response to your question, this is the best that I can figure out. The difference in the diseases is based on the results of the biopsies and thusly the prognosis. IPF is generally associated with the honeycombing of the lungs and has a poor prognosis. The IP is idio-pathic or unknown path or origin. In my case the biopsy showed honeycombing and the other good stuff which led to the initial diagnosis of IPF. But I also have enlarged lymphnodes so they changed the diagnosis to PF. But that really didn't seem to fit my situation so they changed the diagnosis to NSIP, non specific interstitial pneumonia, in other words " We don't know". There are actually quite a few different types of PF. DIP, BOOP, RB/ILD,etc,. The Pulmonary Fibrosis Foundation has a nice little handbook that briefly explains each of the diseases. I'm sure Leann (sp) co;uld get you a copy if you asked real nice and sent lots of cookies. Hope this helps.

Gordon

Re: New to group

Hi, Vonnie: I am new to this group also and it has already helped me quite a bit. I was diagnosed with IPF about five or six months ago and I too have sooooo many questions. Like why is IPF worse than PF? Anyone know?

Barblittletorimommydrew wrote:

Hi to everyone, so happy to have found this group! I have been reading what you all wrote. I too have so many questions. I was told about 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He sent a respitory therapist who new more than him. God bless you all. I'm on ox at night. My name is yvonne or some call me vonny. Looking forward to chating with you. bye for now

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Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

March 24, 2006

Gordon and Barb,

I have PF....not IPF....but, I have extensive honeycombing. I believe the difference is that PF has a cause (such as autoimmune or connective tissue disease) and they can treat the cause. Idiopathic or IPF has an unknown cause. So, they can only treat symptoms. It seems to progress faster. End result of both is the same...honeycombing, etc.

Barb wrote: Do you think these dr's don't really know what they are doing? They may know but think you are not smart enough to understand so no use explaining anything to you. I believe when you go see them next time that you are going to be lots smarter! And have lots more questions. Go to it, girl!

I will try to get the handbook that you mentioned Gordon. Maybe they have it on pdf. Thanks for good info!

My prayers for you both,

Joyce

> Hi to everyone, so happy to have found this group! I have been reading > what you all wrote. I too have so many questions. I was told about > 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He > sent a respitory therapist who new more than him. God bless you all. > I'm on ox at night. My name is yvonne or some call me vonny. Looking > forward to chating with you. bye for now> > > > > > > > > ---------------------------------> Yahoo! Mail> Bring photos to life! New PhotoMail makes sharing a breeze. > >

March 24, 2006

Hi Barb, The only treatment I'm on is O2 also. I prefer this to medications. There is no known cure for this disease, and the medication only gave me side effects I would rather do without. I was started on med's and immediately my life changed, Now I'm fighting the after effects. I am going to feel like a new person soon I hope. The disease changes our lives enough the med's ( I FEEL ) makes life ---not good. But with faith in God I like Joyce take it one day at a time. God Bless Peggy

on 3/24/06 3:29 AM, Barbara Soice at babs594@... wrote:

Joyce:

How about praying and picking me out a lung dr. My stinks. I am having no treatment except ox.

Barb

janne5303 wrote:

Vonnie,

You deserve better care than just being SENT HOME. If it is possible for you with insurance, etc. .... you should get a consult with another doc. " At first the Dr. did nothing. I had to insist " Hopefully, your insistence paid off.

I know this may sound strange.....But, one day out of sheer terror and frustration, I sat down with my list of pulmonary doctors and prayed for help. (By this time, I had been misdagnosed and mistreated for quite awhile) I chose a doc I had never heard of and made an appointment. He turned out to be the director of the Respiratory Department of a major hospital here. He got agressive right away. He sent me to a surgeon for open lung biopsy (some scraping,etc went along with that) and a new Rheumatologist. These docs have saved my life. That was 1997. I have fought this disease and have educated myself to the best of my ability to know how to fight. With God's help, I believe I have had years that I would not have had.

I have learned so much already in the last few weeks on this website. Stay tuned and let us know how you are doing.

WE CARE!

New Yahoo! Messenger with Voice. Call regular phones from your PC <http://us.rd.yahoo.com/mail_us/taglines/postman5/*http://us.rd.yahoo.com/evt=39666/*http://beta.messenger.yahoo.com > and save big.

March 25, 2006

Gordon,

I think you are right! The prognosis is the same. Just birds of a different feather, I guess. While I have been reading these posts, I am seeing people with the same symptoms and biopsy reports, all going down the same road,.....with different diagnosis' tacked on them. Confusing?

Joyce> > Hi to everyone, so happy to have found this group! I have been reading > > what you all wrote. I too have so many questions. I was told about > > 7months ago I had IPF. At first the Dr. did nothing. I had to insist.He > > sent a respitory therapist who new more than him. God bless you all. > > I'm on ox at night. My name is yvonne or some call me vonny. Looking > > forward to chating with you. bye for now> > > > > > > > > > > > > > > > > > ---------------------------------> > Yahoo! Mail> > Bring photos to life! New PhotoMail makes sharing a breeze. > > > >

July 4, 2006

>

> Hello my name is sandy/oklahoma:

> I have been told I have copd by one pcp. They sent me to a pulmo

> doctor he has ran some test. He thinks it may be fibrosis.So I

really

> do not know where or what group I should be in.Your group seem so

> helpful. They are treating me with

> spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take

same

> type of medicines. I am so confused on what I might have.any one

else

> been through this? I am almost 59 in a couple of days. smoked for

20

> years but stoped two years ago when told I have copd or fibrosis

exrays

> show right lung get no air or flow into it. real white.also says

> trapping upper don't know what that is either. Doctors seem to not

want

> to spend time to tell you any thing. also I have ask for a rehab

he

> says it just need to wait until they get test results back. well

if you

> can give me so input please do. thanks sandy/okla

>

July 4, 2006

> >

> > Hello my name is sandy/oklahoma:

> > I have been told I have copd by one pcp. They sent me to a pulmo

> > doctor he has ran some test. He thinks it may be fibrosis.So I

really

> > do not know where or what group I should be in.Your group seem so

> > helpful. They are treating me with

> > spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis

take

> same

> > type of medicines. I am so confused on what I might have.any one

else

> > been through this? I am almost 59 in a couple of days. smoked

for 20

> > years but stoped two years ago when told I have copd or fibrosis

> exrays

> > show right lung get no air or flow into it. real white.also says

> > trapping upper don't know what that is either. Doctors seem to

not

> want

> > to spend time to tell you any thing. also I have ask for a rehab

he

> > says it just need to wait until they get test results back. well

if

> you

> > can give me so input please do. thanks sandy/okla

> >

>

hello joyce:

yes I have had pft shows moderate copd stage 2 upper restriction

also trapping? do not understand what that is. going to pulmo dr.

19.glad to hear we all have some of the same problems. nice to meet

you.hope to hear from other members. don't know for sure if I am

replying right. sandy/okla

July 5, 2006

Hi Sandy/ Ok., Welcome to our group. I just hate welcoming new people, but know that we are all here for you. Yes you are in the right spot.

My name is Peggy, 63 years young. diagnosed in Sept. 04. with ipf. I am on oxygen. No medications except NAC

that is a supplement.. I don't have a cough as some do. (God is Good)

I took prednisone for a while and used Advair. Are you bothered with thrush?? I had a fit with it.

God Bless you and Comfort you...I will be praying for you...Peggy 09/04 ipf

Hello my name is sandy/oklahoma:

I have been told I have copd by one pcp. They sent me to a pulmo

doctor he has ran some test. He thinks it may be fibrosis.So I really

do not know where or what group I should be in.Your group seem so

helpful. They are treating me with

spirivia,albut,advair,clarinex,singular.Do pulmonary fibrosis take same

type of medicines. I am so confused on what I might have.any one else

been through this? I am almost 59 in a couple of days. smoked for 20

years but stoped two years ago when told I have copd or fibrosis exrays

show right lung get no air or flow into it. real white.also says

trapping upper don't know what that is either. Doctors seem to not want

to spend time to tell you any thing. also I have ask for a rehab he

says it just need to wait until they get test results back. well if you

can give me so input please do. thanks sandy/okla

July 5, 2006

Hi E, (we have another ) Again I hate to welcome anyone to this group but Welcome.

What was your diagnosis? Have you read any information on line? It can scare the pageeeze out of you. We are here to answer any questions can. I am pretty sure you will get an answer to any question you might have. I do understand the ticket part. It puts you in a different place when you hear this kind of diagnosis.

Did you fill out a profile. I ask because I can't remember who has and who hasn't we are getting so many newbies lately..Gotta hate that..

God Bless you and give you peace with all the feelings you are going through. Remember you are not alone and that we are always here for you... Peggy 09/04 ipf

I am new to this group and disease and know very little. I was diagnosed in Dec. 05. I was so upset after seeing to doc, I got a ticket on the way home. 17 miles over the speed limit. I thought coughing was a part of the disease for everbody. Let me know.

Peggy wrote: