Re: ER

[Guest guest]

for several years i was seeing a family doctor and cardiologist-- thinking problems were heart related due to family history

shortness of breath when walking up hill for many years -- thought it was from being out of shape, overweight, and cardiac

excessive tiredness -- one summer was really bad -- went to doc who referred me to cardiologist

when SOB just walking around the house started -- went to er twice -- ruled out cardiac issues

first er visit said maybe bronchitis -- gave a prescription for albuterol -- what a waste -- didn't do anything

two weeks later at second er (different location) , cardiologist came to meet me there and said maybe asthma --referred me to pulmonary who made the diagnosis after 3 or 4 visits

there is a lady in my neighborhood who complained about a cough for about 2 years -- went to a variety of doctors - was treated for a varitey of "lung" diseases -- i forget the whole story -- until someone figured out that it was some form of ILD

about 2 years ago, she found out about some kind of hernia, had surgery for it, and cough \decreased significantly

haven't seen her for awhile so don't know what is happening with her now

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: ERTo: Breathe-Support Date: Monday, October 5, 2009, 10:19 PM

Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early.

C_53_Familial IPF_5/09Washington

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER

Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow.When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or

somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal

symptoms.

[Guest guest]

,

While some of us may have delayed seeking medical treatment for the reasons you talk about (denial, pride, fear) more of us sought help and were treated for things that we don't have. I know I was treated for asthma and multiple bouts of bronchitis for a year and a half before I became so sick that I ended up in the emergency room on Memorial Day of 2006. That's when a ct scan was done and the mystery was solved.

The medical profession is very very ill informed about the symptoms of these diseases. I should add that my sats were never once checked in my primary's office. If they had been I would have been diagnosed much much sooner.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 5, 2009 10:19:10 PMSubject: Re: ER

Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early.

C_53_Familial IPF_5/09Washington

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER

Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow.When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or somethingelse

kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal

symptoms.

[Guest guest]

Funny you should talk about how PF was diagnosed. My primary care physician

immediately took an xray when I complained of shortness of breath. I had just

had total knee replacement and the fear was a blood clot in my lungs. She knew

enough when she saw the xray to know that it wasn't a clot in the lungs, but

that something else was afoot. It would be two months before I could get in to

see a pulmo-dude so she prescribed a home concentrator for sleeping at night.

My sats while seated in a doctors office were just fine (and continue to be that

way today). The pulmo dudte never said anything to me about needing oxygen. He

did a short walk test in his office and had one of his office aides do a pseudo

function test. He took xrays every two weeks for 3 months as he gave me a

prescription for prednisone the first day before he even saw the xray. After 3

months, he decided to do the broncoscopy and then told me I didn't have COPD,

BOOP, Sarcoidosis, but that it was some sort of ILD. That was it. I asked to

be taken off the prednisone and never went back to see him. Just went on with

my life, not really knowing. Then when I was laid off from work August 2008, I

decided to find out more about ILD. That was when I found all of you wonderful

people. I think in retrospect, my primary care physician knew what she did not

know and knew I had to see a specialist. She was as upset as I was with

everything. She has since quit her practice for personal reasons. I miss her

as she was so thorough and informed. She wasn't afraid to admit she did not

have all of the answers. She appreciated my input as a patient.

We all have different stories. Bruce has said it before.... we are all learning

how to be our own best advocate.

Stefani 61 year old Utahn

ILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea

4/2009

> >

> > ,

> > While some of us may have delayed seeking medical treatment for the

> reasons you talk about (denial, pride, fear) more of us sought help and

> were treated for things that we don't have. I know I was treated for

> asthma and multiple bouts of bronchitis for a year and a half before I

> became so sick that I ended up in the emergency room on Memorial Day of

> 2006. That's when a ct scan was done and the mystery was solved.

> > The medical profession is very very ill informed about the symptoms of

> these diseases. I should add that my sats were never once checked in my

> primary's office. If they had been I would have been diagnosed much much

> sooner.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> >

> >

> >

> >

> >

> > ________________________________

> > From: worth hope2thend@

> > To: Breathe-Support

> > Sent: Mon, October 5, 2009 10:19:10 PM

> > Subject: Re: ER

> >

> >

> > Ditto! I think most of us with PF were diagnosed at a much later

> stage because of our own reluctance (pride, fear, or denial) to go to

> the doctor's when we new we should have done so earlier. Almost every

> chronic disease is much more treatable when caught early.

> >

> > C_53_Familial IPF_5/09

> > Washington

> >

> >

> >

> >

> >

> > ________________________________

> > From: Bruce <brucemoreland@ gmail.com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Sun, October 4, 2009 9:36:34 AM

> > Subject: ER

> >

> >

> > Just want to remind everyone, when you have unusual symptoms such as

> > chest pains or coughing up blood or extreme drop of sats or shortness

> of

> > breath or anything else like that, get immediate attention. By

> > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of

> > days. By now you know your systems well enough to know the normal

> > symptoms of your disease. You know when " this feeling is different " or

> > " I'm use to such and such but today its just horrible. " Now, I didn't

> > tell Pink Joyce to run her fastest to ER because even though medical

> > care is very important for a potential fracture of a bone, it's not

> > likely a matter of life or death whether she gets attention today or

> > tomorrow.

> >

> > When the question of whether you should go to ER crosses your mind,

> then

> > I'd say that is already your answer. Better safe than sorry. Force the

> > disease to run its full course but don't let a complication or

> something

> > else kill you suddenly and when it could be prevented. I'm not just

> > preaching to Merf who just posted here but to all of you and to

> myself.

> > Why so fervent? Because I know members of this and another forum who

> > delayed and we'll never know if had they not delayed might they still

> be

> > alive. They were not members whose PF was advanced that far or close

> to

> > taking them on its own. I also, thankfully, know a couple we've urged

> to

> > get help including one who immediately called an ambulance and she was

> > admitted, but the doctor told her that had she waited overnight she

> > would have died.

> >

> > Yes, we've all been told what we thought was serious or unusual was

> > nothing and felt silly. But wasn't that what many of us were told

> before

> > PF was diagnosed. I know I was told I was old and out of shape, but I

> > knew it was more. You also know when what you're experiencing just

> isn't

> > one of your normal symptoms.

> >

>

[Guest guest]

I was diagnosed with PF after a visit to the ER....I had a tough time breathing and sweating like a pig. My pulmo dude was in the ER nothing was really done, I went to see the pulmo Dr.. couple of years later and after an exray he told me I had 3 to 6 months to live, dredisone however worked and he changed his mind. I think I've changed my mind about him and am looking for a new pulmodude...........lol

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Tuesday, October 6, 2009 3:54:42 PMSubject: Re: ER

Funny you should talk about how PF was diagnosed. My primary care physician immediately took an xray when I complained of shortness of breath. I had just had total knee replacement and the fear was a blood clot in my lungs. She knew enough when she saw the xray to know that it wasn't a clot in the lungs, but that something else was afoot. It would be two months before I could get in to see a pulmo-dude so she prescribed a home concentrator for sleeping at night. My sats while seated in a doctors office were just fine (and continue to be that way today). The pulmo dudte never said anything to me about needing oxygen. He did a short walk test in his office and had one of his office aides do a pseudo function test. He took xrays every two weeks for 3 months as he gave me a prescription for prednisone the first day before he even saw the xray. After 3 months, he decided to do the broncoscopy and then told me I didn't have COPD, BOOP, Sarcoidosis, but that

it was some sort of ILD. That was it. I asked to be taken off the prednisone and never went back to see him. Just went on with my life, not really knowing. Then when I was laid off from work August 2008, I decided to find out more about ILD. That was when I found all of you wonderful people. I think in retrospect, my primary care physician knew what she did not know and knew I had to see a specialist. She was as upset as I was with everything. She has since quit her practice for personal reasons. I miss her as she was so thorough and informed. She wasn't afraid to admit she did not have all of the answers. She appreciated my input as a patient.We all have different stories. Bruce has said it before.... we are all learning how to be our own best advocate.Stefani 61 year old UtahnILD 2/2006, NSIP (cellular) 6/2009, UIP 9/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > ,> > While some of us may have delayed seeking medical treatment for the> reasons you talk about (denial, pride, fear) more of us sought help and> were treated for things that we don't have. I know I was treated for> asthma and multiple bouts of bronchitis for a year and a half before I> became so sick that I ended up in the emergency room on Memorial Day of> 2006. That's when a ct scan was done and the mystery was solved.> > The medical profession is very very ill informed about the symptoms of> these diseases. I should add that my sats were never once checked in my> primary's office. If they had been I would have been diagnosed much much> sooner.> >> > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >> >>

>> >> >> >> > ____________ _________ _________ __> > From: worth hope2thend@> > To: Breathe-Support@ yahoogroups. com> > Sent: Mon, October 5, 2009 10:19:10 PM> > Subject: Re: ER> >> >> > Ditto! I think most of us with PF were diagnosed at a much later> stage because of our own reluctance (pride, fear, or denial) to go to> the doctor's when we new we should have done so earlier. Almost every> chronic disease is much more treatable when caught early.> >> > C_53_Familial IPF_5/09> > Washington> >> >> >> >> >> > ____________ _________ _________ __> > From: Bruce

<brucemoreland@ gmail.com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Sun, October 4, 2009 9:36:34 AM> > Subject: ER> >> >> > Just want to remind everyone, when you have unusual symptoms such as> > chest pains or coughing up blood or extreme drop of sats or shortness> of> > breath or anything else like that, get immediate attention. By> > immediate, I mean RIGHT NOW, not if it doesn't improve in a couple of> > days. By now you know your systems well enough to know the normal> > symptoms of your disease. You know when "this feeling is different" or> > "I'm use to such and such but today its just horrible." Now, I didn't> > tell Pink Joyce to run her fastest to ER because even though medical> > care is very important for a potential

fracture of a bone, it's not> > likely a matter of life or death whether she gets attention today or> > tomorrow.> >> > When the question of whether you should go to ER crosses your mind,> then> > I'd say that is already your answer. Better safe than sorry. Force the> > disease to run its full course but don't let a complication or> something> > else kill you suddenly and when it could be prevented. I'm not just> > preaching to Merf who just posted here but to all of you and to> myself.> > Why so fervent? Because I know members of this and another forum who> > delayed and we'll never know if had they not delayed might they still> be> > alive. They were not members whose PF was advanced that far or close> to> > taking them on its own. I also, thankfully, know a couple we've urged> to>

> get help including one who immediately called an ambulance and she was> > admitted, but the doctor told her that had she waited overnight she> > would have died.> >> > Yes, we've all been told what we thought was serious or unusual was> > nothing and felt silly. But wasn't that what many of us were told> before> > PF was diagnosed. I know I was told I was old and out of shape, but I> > knew it was more. You also know when what you're experiencing just> isn't> > one of your normal symptoms.> >>

[Guest guest]

Dorothy

started cellcept dec 2008, currently on 2000 mgs per day

1000 in am, 1000 in pm

SAT's came up -- don't need o2 24/7 -- just for exertion and sleep

other tests have been stable

was on 40 mgs prednisone prior to cellcept, with cellcept was able to wean prednisone down to 10 mgs, over several months

this month i am on 9 mgs prednisone -- goal is 7 mgs

also violent coughing attacks that i had prior to 40 mgs prednisone have not occurred

still get coughing attacks but not violent

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: ERTo: Breathe-Support Date: Wednesday, October 7, 2009, 2:59 PM

Joyce,

You say you were responsive to meds and that is why you came off the transplant list. I think you told me you were on Cellcept, Do you mind if I ask? How much Cellcept for how long? What was the good response? Did you pulmonary function improve, etc.

I and anxious to know because I have been on Cellcept for a year this month, and have not had any improvement in my tests, CT, etc. and just wondering where I will go from here. There was mention once of Rituximab (?) but I have not found anything positive about that drug.

Thanks,

Dorothy Reinecke-Fayettevil le, GA

66-VATS 7/05 - UIP

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, October 7, 2009 2:47:31 PMSubject: Re: ER

peggy

i agree -- learning about all of this stuff reaches a saturation point -- and too many details

i really don't care which ild i have

i am glad mine is responsive to meds

it can be managed

since there is no cure, the next step for some is transplant

and of course there can be all sorts of complications with that

if i reach that point i plan on going for a transplant -- hopefully it can be put off for a long time

one of the best things about this group is that we learn how to live with the disease

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM

Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early.

C_53_Familial IPF_5/09Washington

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER

Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow..When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or

somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal

symptoms.

[Guest guest]

stability is the goal

improvment is iffy

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: ERTo: Breathe-Support Date: Wednesday, October 7, 2009, 2:59 PM

Joyce,

You say you were responsive to meds and that is why you came off the transplant list. I think you told me you were on Cellcept, Do you mind if I ask? How much Cellcept for how long? What was the good response? Did you pulmonary function improve, etc.

I and anxious to know because I have been on Cellcept for a year this month, and have not had any improvement in my tests, CT, etc. and just wondering where I will go from here. There was mention once of Rituximab (?) but I have not found anything positive about that drug.

Thanks,

Dorothy Reinecke-Fayettevil le, GA

66-VATS 7/05 - UIP

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.â€

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, October 7, 2009 2:47:31 PMSubject: Re: ER

peggy

i agree -- learning about all of this stuff reaches a saturation point -- and too many details

i really don't care which ild i have

i am glad mine is responsive to meds

it can be managed

since there is no cure, the next step for some is transplant

and of course there can be all sorts of complications with that

if i reach that point i plan on going for a transplant -- hopefully it can be put off for a long time

one of the best things about this group is that we learn how to live with the disease

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: ERTo: Breathe-Support@ yahoogroups. comDate: Monday, October 5, 2009, 10:19 PM

Ditto! I think most of us with PF were diagnosed at a much later stage because of our own reluctance (pride, fear, or denial) to go to the doctor's when we new we should have done so earlier. Almost every chronic disease is much more treatable when caught early.

C_53_Familial IPF_5/09Washington

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, October 4, 2009 9:36:34 AMSubject: ER

Just want to remind everyone, when you have unusual symptoms such aschest pains or coughing up blood or extreme drop of sats or shortness ofbreath or anything else like that, get immediate attention. Byimmediate, I mean RIGHT NOW, not if it doesn't improve in a couple ofdays. By now you know your systems well enough to know the normalsymptoms of your disease. You know when "this feeling is different" or"I'm use to such and such but today its just horrible." Now, I didn'ttell Pink Joyce to run her fastest to ER because even though medicalcare is very important for a potential fracture of a bone, it's notlikely a matter of life or death whether she gets attention today ortomorrow..When the question of whether you should go to ER crosses your mind, thenI'd say that is already your answer. Better safe than sorry. Force thedisease to run its full course but don't let a complication or

somethingelse kill you suddenly and when it could be prevented. I'm not justpreaching to Merf who just posted here but to all of you and to myself.Why so fervent? Because I know members of this and another forum whodelayed and we'll never know if had they not delayed might they still bealive. They were not members whose PF was advanced that far or close totaking them on its own. I also, thankfully, know a couple we've urged toget help including one who immediately called an ambulance and she wasadmitted, but the doctor told her that had she waited overnight shewould have died.Yes, we've all been told what we thought was serious or unusual wasnothing and felt silly. But wasn't that what many of us were told beforePF was diagnosed. I know I was told I was old and out of shape, but Iknew it was more. You also know when what you're experiencing just isn'tone of your normal

symptoms.