Elisa

[Guest guest]

,

The story of your initial experience trying to figure out what was going on reminded me of how that went with me. I had a horrible cough that drove me insane beginning in November of 04. It started with a bout of sinusitis, the cough began and it just never left. I was treated repeatedly with antibiotics for sinusitis, bronchitis, strep over and over again. I was told I was allergic to my dog and probably my cat. I was treated for asthma, nothing helped, the cough continued and I felt horrible, exhausted, sick etc. In the meantime I was working full time and looking after my "difficult" teenage son.

On Friday May 26, 2006 I worked a full day in my office. I had two meetings that day which were disrupted repeatedly by my cough. On Monday the 29th I was at a cookout at my sisters home. (It was Memorial Day). At the end of the day, she took me aside and finally called me on my own bs and denial. She told me I was blue and she was calling 911. I persuaded her to let me go home and take care of the dog and then she could call. She agreed and followed me home. When the paramedics arrived my O2 sats were in the low 70's. My legs and feet were swollen and I was in congestive heart failure. I went from the ER right into the ICU where I spent the next 5 days being stabilized. If my sister hadn't insisted I go to the hospital that night I'd likely not be here today. I had an open lung biopsy during that hospitalization and had a dangerous reaction to my pre-op sedation but I survived. Then spent another week in the surgical ICU, a few more days

on a regular floor and then finally home. I've been on O2 24/7 since that time. I came home on high (up to 100mg) doses of prednisone that stablized my illness. Beginning in October of 06 I started weaning off the prednisone and came off completely in February 07 I've remained stable since that time.

In December of last year I moved to Durham NC from NY. My new doctor at Duke is the one who suggested I have an undifferentiated connective tissue disease. I have some symptoms (a horrible itchy, scaly rash on my hands that he calls "mechanics hand rash") and some tantalizing abnormalities in my bloodwork but nothing really definitive as of yet. So since I'm stable, we're not treating anything except my cough with the Advair and my reflux with Nexium. That's it. Most of the time I feel relatively well. I've adjusted to my "new normal" and I'm just grateful to still be here. My son has outgrown his turbulent adolescence and is working full time and going to school full time. He makes me proud. I have 10 nieces and nephews and my sister is due next month with number 11. I can't wait!

When and if I begin to deteriorate Dr. on tells me he will treat me aggressively with prednisone (based on how much it helped last time) and probably something else depending on what type of connective tissue disease they decide I have. (They are leaning towards Dermatomyositis) Right now I am concentrating on staying well, taking care of myself and losing weight. I've lost 25 pounds in the last 2 months which makes me very happy and will thrill my doctor!

So that's the Readers Digest version. Hope I didn't bore you to tears. Let me know if there is anything at all I can do for you!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

So glad I've found you all!

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in

spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking.

He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone

for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family,

but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

[Guest guest]

mary-beth

well done n the weight loss.

thats the first time i've heard the detail of your dianogsis.

i knew you had went into hospital and came out with o2 but

didn't know about the chf. thank god for your sister.

may uip 0606

glasgow scotland

> ,

> You write alot cause you're " An English teacher on steroids " ... .

Now that was pretty funny which just goes to show you have not lost

your sense of the ironic and your sense of humor. Those two things

will help you tremendously as you travel down this road.

> Your story sounds similar to mine and many others I've heard since

I landed in this group in the summer of 06. We're all in this

together and the help and friendship I've found here sustains me.

> My only advice would be to get to UTDallas as soon as you can, for

a complete workup. They will do lots of tests and figure out a course

of action for you.  I know there is at least one other person here

with Sjorgrens.  I have an as yet " undifferentiated " connective

tissue disease that probably caused my fibrosis. I was diagnosed in

June of 06 and have been on supplemental oxygen since then. I was on

high doses of prednisone for several months after my diagnosis but

have been off all steroids (except for Advair) since February of 07.

The good news is I'm stable! I pray for many years of stability!

> Stick with us here, it's a great, knowledgable, compassionate, kind

and funny group of people! We have lots of members in Texas. You are

not alone!!

>

>  Beth 

> Age 48 Fibrotic NSIP 06/06

>  

> Change everything. Love and Forgive    

>  

>  

>

>

>

> So glad I've found you all!

>

>

> Dear lovely people,

>

> My name is and I just turned 52. I live in Mansfield, TX and

> I'm a 6th grade teacher in my last three weeks of school. My story

is

> long and I'm hoping one of you can give me some help and guidance.

I

> am great at giving the same, and hope that I can reciprocate in the

> future.

>

> I've been reading hundreds of past posts for two days seeking

answers

> I wasn't given in this miserable month since diagnosis. In

Jan.2007,

> I had a major coughing spell and had a breathing treatment the

night

> of my dad's visitation at the funeral home. Not having a regular

> doctor at the time, I went to one of those " doc-in-the box " places

> where I liked the doctor. Then, last summer, I had a horrible cough

> and fever twice and was diagnosed by the same doctor both times

with

> bronchitis and put on antibiotics. She never would do a chest X-

ray.

> Flash forward to Dec. '07 when the cough came back in spades. I had

> also started losing weight. I went to another clinic and had X-

rays,

> but no pneumonia. Repeat of this in early January. I did get a

couple

> of asthma sprays, cough meds w/codiene, and nose spray, but coughed

> day and night. By March, I finally made an appointment with

a " good "

> doctor. He also went the allergy route on the treatment, even

though

> I said I'd had fever many times. I had lost 20 lbs. since

> November '07. By mid-March, I came in demanding that I needed help.

> He X-rayed me and said I had pneumonia (same DRY cough) More

> antibiotics, one horrible drug reaction to Cipro, and probably more

> damage done. Two weeks more and I went back for a follow-up. I said

> to him that I thought I had Lupus (my internet research) because I

> was having numb fingers, (Reynaud's, I now know)weight loss, and

> coughing. No, he said. Then...he did an X-ray, heard the crackles,

> came back in stricken looking. He said I might be looking at an

> autoimmune disease and interstitial lung disease or some

infiltrates.

> WHAT????? Can't anybody see this on X-rays?? He got me in for a

sinus

> scan and set an appt. with a pulmonologist. The pulmonologist ran a

> RA panel and I tested high in the whole panel, but I only seem to

> have symtom's of Sjogren's. I had 84% pulmonary functioning. I then

> had a CT done and an asthma test(of course, negative). This doctor

> was the worst! He read the CT scan for the first time in my

presence

> (had it two days) and didn't happen to see " severe pulmonary

> fibrosis " or just didn't care enough. No treatment plan was given,

no

> information except lung scarring from autoimmune disease. He stood

> the whole time like he was in a hurry. He told me to see a

> rheumatologist as soon as possible. The next week when I saw her,

the

> nurse read those words to us and I was shocked. I have been on

> prednisone for three weeks and feel like I have been thrown out in

> the water by the medical profession, totally in charge of figuring

> out what to do physically and mentally. The pulmonologist has since

> left the location, cancelled all appointments, and in his new

> location has appointments in June. My PCP has sent all info to UT

> Southwestern in Dallas to get me on with a great doctor. It could

be

> weeks. Meanwhile, I've had pain and anxiousness, and the need for

> information. I have been back to PCP, but he does not want to order

> a scan knowing how much I've been radiated. He told me to watch for

> signs of a blood clot. I guess I would go to the emergency room

with

> extreme pain. I don't know about exercise, breathing exercises,

food

> to eat, how to sleep at night to maximize breathing, or how to quit

> obsessing about dying in the next ten years. This has been like a

new

> full-time job. I have friends and some family, but feel like I'm on

a

> downward spiral.

>

> If you've read to the end here, bless your caring heart! I am an

> English teacher on steroids, so I wrote a lot! Thanks so much for

any

> advice, prayers, direction you can throw my way.

>

>

>

[Guest guest]

Hey girls, Makes ya wonder--------chalk dust? A thought. K Illinoisdenise randel wrote: Hi , I too am 52 and was an 8th grade English teacher until I quit 2 years ago after my biopsy. My story is incredibly similar to yours. Coughed so much in my classroom I couldn't speak after 3rd period each day. Had several bouts

of bronchitis, incredible fatigue,seem to be at the doctor's constantly and no one did an xray! I have learned so much from everyone on this site, but mainly I think there are no pat answers and since all of us react differently to food, medications and exercise, you almost have to attack this disease with the idea that you will try new things and discard them if they don't work for you. Anyway, from one English teacher to another-WELCOME! I am sorry you needed to join us, but so glad you did. Sarcoid/PF 3/2006 California So glad I've found you all!Date:

Wed, 14 May 2008 20:44:30 -0000 Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics.

She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said.

Then...he did an X-ray, heard the crackles, came back in stricken looking. He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those

words to us and I was shocked. I have been on prednisone for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new

full-time job. I have friends and some family, but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

[Guest guest]

To , K and all the other

teachers.....

I specifically asked my pulmonologist if the NSIP could have been

caused by the chalk dust of

more than 24 years of teaching. He said that the biopsy ruled it out

for me. In fact, my pottery didn't cause this

and all other environmental chemicals were ruled out too. No

auto-immune stuff either! My ILD otherwise known as NSIP ( a form of

PF) was

a result of infection ( bacterial or viral) that came and went without

my being really a aware. He called it" opportunistic"

great...I asked if the opportun ity could happen again! He

said"probably not! "

I was probably ill for about 4 months before the coughing and SOB got

my attention..I know that is strange..but my Dad was dying

from Pancreatic cancer, I was trying to keep my Mom OK and totally not

focused on me at all.

My Dad died in May 2005 and I went to the family doctor in July due to

the coughing and SOB. She sent me for

Xrays, bloodwork, specialists, HRCT and PFT's , 6 minute walks, and

finally the lung biopsy in late August sealed the deal.

Everyone here has a different list of" maybe it was caused by" and it

really doesn't matter...I still have an ILD, I'm still on O2 24/7

and enough medications to be a walking chemistry experiment.So it's

almost 3 years and counting!

So, don't use up your energy with what if's ...keep it for living the

best you can now.

We only get one go around..and mine is going to be on the carousels I

love with my family along for the ride.

There are many teachers on this board and we all learn from each other.

I just read a post from our Vickie who quoted a prayer from our

departed Ginger .It really made me think!

I hope you read both of the posts...their outlook on life shows their

strength, faith, and love.

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna be

iron like a lion in Zion” Bob Marley

Kennelly wrote:

Hey girls,

Makes ya wonder--------chalk dust? A thought.

K

Illinois

denise randel <dnsrndl> wrote:

Hi ,

I too am 52 and was an 8th grade English teacher until I

quit 2 years ago after my biopsy. My story is incredibly similar to

yours. Coughed so much in my classroom I couldn't speak after 3rd

period each day. Had several bouts of bronchitis, incredible

fatigue,seem to be at the doctor's constantly and no one did an xray! I

have learned so much from everyone on this site, but mainly I think

there are no pat answers and since all of us react differently to food,

medications and exercise, you almost have to attack this disease with

the idea that you will try new things and discard them if they don't

work for you. Anyway, from one English teacher to another-WELCOME! I

am sorry you needed to join us, but so glad you did.

Sarcoid/PF 3/2006 California

-----

Original Message ----

From: STEPHEN R WILSON <svwilsonmsn>

To: Breathe-Support

Sent: Saturday, May 17, 2008 9:40:13 PM

Subject: RE: So glad I've found you all!

, A school teacher on steroids eh. Could be scary. My

posts can be confusing at times even to myself. Take it easy on my

composition. Seem to be forgetting everything that used to come

naturally to me. Oh yes welcome to this board. Has been great for me.

Steve 60 from WA

IPF 2006 Parkinsons 2008

Alzheimers 2008

From: "elisacole"

<elisacoleyahoo (DOT) com>

Reply-To: Breathe-Support@ yahoogroups. com

To: Breathe-Support@ yahoogroups. com

Subject: So glad I've found you all!

Date: Wed, 14 May 2008 20:44:30 -0000

Dear lovely people,

My name is and I just turned 52. I live in Mansfield, TX and

I'm a 6th grade teacher in my last three weeks of school. My story is

long and I'm hoping one of you can give me some help and guidance. I

am great at giving the same, and hope that I can reciprocate in the

future.

I've been reading hundreds of past posts for two days seeking answers

I wasn't given in this miserable month since diagnosis. In Jan.2007,

I had a major coughing spell and had a breathing treatment the night

of my dad's visitation at the funeral home. Not having a regular

doctor at the time, I went to one of those "doc-in-the box" places

where I liked the doctor. Then, last summer, I had a horrible cough

and fever twice and was diagnosed by the same doctor both times with

bronchitis and put on antibiotics. She never would do a chest X-ray.

Flash forward to Dec. '07 when the cough came back in spades. I had

also started losing weight. I went to another clinic and had X-rays,

but no pneumonia. Repeat of this in early January. I did get a couple

of asthma sprays, cough meds w/codiene, and nose spray, but coughed

day and night. By March, I finally made an appointment with a "good"

doctor. He also went the allergy route on the treatment, even though

I said I'd had fever many times. I had lost 20 lbs. since

November '07. By mid-March, I came in demanding that I needed help.

He X-rayed me and said I had pneumonia (same DRY cough) More

antibiotics, one horrible drug reaction to Cipro, and probably more

damage done. Two weeks more and I went back for a follow-up. I said

to him that I thought I had Lupus (my internet research) because I

was having numb fingers, (Reynaud's, I now know)weight loss, and

coughing. No, he said. Then...he did an X-ray, heard the crackles,

came back in stricken looking. He said I might be looking at an

autoimmune disease and interstitial lung disease or some infiltrates.

WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus

scan and set an appt. with a pulmonologist. The pulmonologist ran a

RA panel and I tested high in the whole panel, but I only seem to

have symtom's of Sjogren's. I had 84% pulmonary functioning. I then

had a CT done and an asthma test(of course, negative). This doctor

was the worst! He read the CT scan for the first time in my presence

(had it two days) and didn't happen to see "severe pulmonary

fibrosis" or just didn't care enough. No treatment plan was given, no

information except lung scarring from autoimmune disease. He stood

the whole time like he was in a hurry. He told me to see a

rheumatologist as soon as possible. The next week when I saw her, the

nurse read those words to us and I was shocked. I have been on

prednisone for three weeks and feel like I have been thrown out in

the water by the medical profession, totally in charge of figuring

out what to do physically and mentally. The pulmonologist has since

left the location, cancelled all appointments, and in his new

location has appointments in June. My PCP has sent all info to UT

Southwestern in Dallas to get me on with a great doctor. It could be

weeks. Meanwhile, I've had pain and anxiousness, and the need for

information. I have been back to PCP, but he does not want to order

a scan knowing how much I've been radiated. He told me to watch for

signs of a blood clot. I guess I would go to the emergency room with

extreme pain. I don't know about exercise, breathing exercises, food

to eat, how to sleep at night to maximize breathing, or how to quit

obsessing about dying in the next ten years. This has been like a new

full-time job. I have friends and some family, but feel like I'm on a

downward spiral.

If you've read to the end here, bless your caring heart! I am an

English teacher on steroids, so I wrote a lot! Thanks so much for any

advice, prayers, direction you can throw my way.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the

Lord

14

No virus found in this incoming message.

Checked by AVG. Version: 8.0.100 / Virus Database: 269.23.20/1453 - Release Date: 5/18/2008 9:31 AM

[Guest guest]

,

Not just chalk, much more. Copier fumes, ink, markers, mold, it could have been a combination and a long term low level exposure. My disease is immunological. My immune system was damaged and now my body will not detox anything. I had to find my own way. The doctors told me mold doesn't harm you. In my case they were dead wrong. I kept having problems and no one would listen to me.

Take a look at this here. Just trying to connect dots. you would know better where and when you felt better or worse. At home or in school.

God Bless!!!

http://www.revolutionhealth.com/stories/view/14c363e247ad4b1a897570dabfabfd15

http://www.environmentalhealth.ca/w9394sherry.html

dragonflymcs

Mayleen 02/07 ILD / MCS

So glad I've found you all!Date: Wed, 14 May 2008 20:44:30 -0000

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in

spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking.

He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone

for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family,

but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

[Guest guest]

Z....I really agree with you. How I got this disease really doesn't bother me. I got it and it ain't goin' away!

I have no auto-immune stuff either. As you know, I was a professional ceramist and my dr. 'guesses' that is what caused my disease. (dust).

She changed it from IPF to NSIP because for the past 2 years I have remained stable and PF progresses. Who really knows.

I do remember now, as you write, about the late 90s, having a bacterial or viral infection that made me sicker than I have ever been in my life. I was so sick I couldn't even talk. Now I'm wondering.......

Hmmmmmm.

But as you say, oh well, let's keep going. Thank God for our wonderful board for support. Thanks for this post .

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

So glad I've found you all!Date: Wed, 14 May 2008 20:44:30 -0000

Dear lovely people,My name is and I just turned 52. I live in Mansfield, TX and I'm a 6th grade teacher in my last three weeks of school. My story is long and I'm hoping one of you can give me some help and guidance. I am great at giving the same, and hope that I can reciprocate in the future.I've been reading hundreds of past posts for two days seeking answers I wasn't given in this miserable month since diagnosis. In Jan.2007, I had a major coughing spell and had a breathing treatment the night of my dad's visitation at the funeral home. Not having a regular doctor at the time, I went to one of those "doc-in-the box" places where I liked the doctor. Then, last summer, I had a horrible cough and fever twice and was diagnosed by the same doctor both times with bronchitis and put on antibiotics. She never would do a chest X-ray. Flash forward to Dec. '07 when the cough came back in spades. I had also started losing weight. I went to another clinic and had X-rays, but no pneumonia. Repeat of this in early January. I did get a couple of asthma sprays, cough meds w/codiene, and nose spray, but coughed day and night. By March, I finally made an appointment with a "good" doctor. He also went the allergy route on the treatment, even though I said I'd had fever many times. I had lost 20 lbs. since November '07. By mid-March, I came in demanding that I needed help. He X-rayed me and said I had pneumonia (same DRY cough) More antibiotics, one horrible drug reaction to Cipro, and probably more damage done. Two weeks more and I went back for a follow-up. I said to him that I thought I had Lupus (my internet research) because I was having numb fingers, (Reynaud's, I now know)weight loss, and coughing. No, he said. Then...he did an X-ray, heard the crackles, came back in stricken looking. He said I might be looking at an autoimmune disease and interstitial lung disease or some infiltrates. WHAT????? Can't anybody see this on X-rays?? He got me in for a sinus scan and set an appt. with a pulmonologist. The pulmonologist ran a RA panel and I tested high in the whole panel, but I only seem to have symtom's of Sjogren's. I had 84% pulmonary functioning. I then had a CT done and an asthma test(of course, negative). This doctor was the worst! He read the CT scan for the first time in my presence (had it two days) and didn't happen to see "severe pulmonary fibrosis" or just didn't care enough. No treatment plan was given, no information except lung scarring from autoimmune disease. He stood the whole time like he was in a hurry. He told me to see a rheumatologist as soon as possible. The next week when I saw her, the nurse read those words to us and I was shocked. I have been on prednisone for three weeks and feel like I have been thrown out in the water by the medical profession, totally in charge of figuring out what to do physically and mentally. The pulmonologist has since left the location, cancelled all appointments, and in his new location has appointments in June. My PCP has sent all info to UT Southwestern in Dallas to get me on with a great doctor. It could be weeks. Meanwhile, I've had pain and anxiousness, and the need for information. I have been back to PCP, but he does not want to order a scan knowing how much I've been radiated. He told me to watch for signs of a blood clot. I guess I would go to the emergency room with extreme pain. I don't know about exercise, breathing exercises, food to eat, how to sleep at night to maximize breathing, or how to quit obsessing about dying in the next ten years. This has been like a new full-time job. I have friends and some family, but feel like I'm on a downward spiral.If you've read to the end here, bless your caring heart! I am an English teacher on steroids, so I wrote a lot! Thanks so much for any advice, prayers, direction you can throw my way.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

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