Re: So glad I've found you all!

[Guest guest]

Hi ,

Sorry you had to find us, but welcome to the group. You have definitely come to the right place for loads of information. There are so many helpful and caring people on this group. I was just diagnosed in January 2008 by lung biopsy and am fairly new to the disease myself but I have gotten so much help here. I don't know how much information I can give you myself but there are lots of people here who are more than willing to help. Bruce is our resident info person. You can ask him nearly anything and if he does not know the answer, he will find it for you. Bless your heart, Bruce. What would we do without you? I will say a lot of us have had "bad experiences" with the medical profession, but don't give up. There are some good guys out there, too. I can understand your anxiety. I am on steroids, too, and am scheduled to go to the University of Alabama at Birmingham next month for

testing. The only thing I know so far is that I have an incurable disease. The closer the date gets, the more anxious I get. Hang in there and we are glad to have you with the group!!

Caro

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi

Subject: So glad I've found you all!To: Breathe-Support Date: Wednesday, May 14, 2008, 3:44 PM

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]

,

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]

Thanks, Beth, for the encouragement. I would like to soon hear about your experiences at first, thinking they may be similar to mine. Did the Prednisone stop anything from progressing? With a connective tissue disease, what has been your course of treatment? Anyway, I appreciate your reply! Beth wrote: , 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]

OK ,

No spell checking! Now I can on. lol

You are so not alone. We seem to have been tossed in a bin where most Dr's never tread. My ex primary care physician almost killed me, so I fired her. My new PCP is a doll, who has the most caring bed side manor I've ever seen and was so sad because he could not help me and had to send me to a Pulmonary specialist. He does make sure he get all my reports and we discuse them if I have the need!

It took two hospital visits to figure out what was wrong. It was not until I had a high density CAT scan, that I was told I have IPF (Idiopathic Pulmonary Fibrosis). Idiopathic meaning ..." Of no known origin"!

I went from working to being on oxygen 24/7 in 2 weeks and I've been on it since.

Like you, I was given no real instructions. I guess I was mad, not scared, so I looked it all up myself and the best thing I've found is this site!

I'm not on much. I look at it a couple of times a day, but if I don't see my name, I just delete and leave. But that's just me.

The most important thing I can tell you is, have Dr's you feel good about. Write your questions down and ask till you feel comfortable.

I was a Paramedic for years, so I know how different Dr's are and it is up to you to fine the best for yourself!!

Good luck and don't be scared. there will be healthy people you know, who will die long before you, because we just never know.

My info is in the data base, so if you feel like calling, go right ahead!

Hugs,

TerryTerry Pennisi 11/07 IPF Nevada

Subject: So glad I've found you all!To: Breathe-Support Date: Wednesday, May 14, 2008, 8:44 PM

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]

....as always, we're glad to have you with us but not glad you need to be here.

Hang around. You say you've been reading hundred of posts so you know what names are the board a lot. Bruce leaves tomorrow for an extended trip into June but he is our groovy guru. There are many here who know so much but some of them don't post so much anymore.

Unfortunately, it is not unusual for us to have from unpleasant to horrid stories about the drs who treat us. I do think some of it is because they simply don't know enough about this disease and hate to tell us there is nothing that can be done.

Nevertheless they can be kind and helpful and some of them aren't even that!

I was dx(diagnosed) 3-06 w/IPF and two years later I've remained stable so now the dx is NSIP. No treatment, nothing changed so guess it doesn't really make any difference what it's called.

I am on O2 at night and during the day w/exertion.

You have been through a lot and I hope some answers are soon coming. Do see a good pulmonologist and DO get a second opinion.

Stay with us. You'll like us.

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!

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]

Hi ,

So glad that you landed here. You are most welcome.

I did read to the end. I know where you are and it is like walking around in a maze....in the dark. This is one disease where even doctors don't seem to be well informed. Most don't agree on treatment.

Keep up the search for good medical care. I think you are headed in the right direction. As you read and self educate, you will calm down. Don't hesitate to ask for medication to deal with the panic and anxiety.

Sleep with your head elevated. Do rehab ..... you will learn so much about your 02 needs and how to keep your body stronger. Give yourself time to get used to the diagnosis, just let the feelings happen.....then know that only God knows when it is appointed for you to die. Doctors can not make that call.

Stick around. I have learned so much from this group.

Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16>> 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]

, I am so sorry that you had to seek out this group. But, you have found a group of really caring people. There is a lot of knowledge to be gleened from this family of friends. My name is Wally Holmesly, I hail from Snyder, Texas and was diagonsed in October 2006. So scooch on in here, question away and we will do all we can to help you deal with this monster. Wally NSIP 10/06 west Texaselisacole wrote: 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]

Sher, Thanks so much for the welcome! I do have a huge amount of questions and will be throwing those out. I have read that you are almost 70 and hope to have a BIG party! I hope to help you celebrate when it gets here. If you could tell me anything about your initial treatment when first diagnosed, that might be helpful. I seem to be breathing fine most of the time and after four months of coughing night and day, it's stopped for the most part. Without a new pulmonologist yet, though, I know of no reasons or documentation to say why. I am on prednisone, so sleeping is bad. I lay awake and think about if my heart is involved, do I have PHT, what is the actual pain in my chest caused from, and so on. Anyway, I plan to have a good weekend and try to enjoy "the moment". Projecting into the future has been ruining my "right now"! Hope your day goes well! Sher Bauman wrote: ....as always, we're glad to have you with us but not glad you need to be here. Hang around. You say you've

been reading hundred of posts so you know what names are the board a lot. Bruce leaves tomorrow for an extended trip into June but he is our groovy guru. There are many here who know so much but some of them don't post so much anymore. Unfortunately, it is not unusual for us to have from unpleasant to horrid stories about the drs who treat us. I do think some of it is because they simply don't know enough about this disease and hate to tell us there is nothing that can be done. Nevertheless they can be kind and helpful and some of them aren't even that! I was dx(diagnosed) 3-06 w/IPF and two years later I've remained stable so now the dx is NSIP. No treatment, nothing changed so guess it doesn't really make any difference what it's called. I am on O2 at night and during the day

w/exertion. You have been through a lot and I hope some answers are soon coming. Do see a good pulmonologist and DO get a second opinion. Stay with us. You'll like us. 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! 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]

Hi ! welcome! I am new here too and have found more answers than i do at my doctors.

I have another question to all. Those chest pains, the best discription for the ones I have is

that they feel like a"charlie horse" they stopped after the prednisone treatment in january08

but seemed to start to creep back in April, not as much as before the prednisone until yesterday

this morning they were one after the other bringing tears, and that unsureness "do I dial 911 or not?"

but the last half hour they seemed to have ceased. What the hell is happening when we feel

that?

With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~

To: Breathe-Support From: elisacole@...Date: Fri, 16 May 2008 08:09:34 -0700Subject: Re: So glad I've found you all!

Sher,

Thanks so much for the welcome! I do have a huge amount of questions and will be throwing those out. I have read that you are almost 70 and hope to have a BIG party! I hope to help you celebrate when it gets here.

If you could tell me anything about your initial treatment when first diagnosed, that might be helpful. I seem to be breathing fine most of the time and after four months of coughing night and day, it's stopped for the most part. Without a new pulmonologist yet, though, I know of no reasons or documentation to say why. I am on prednisone, so sleeping is bad. I lay awake and think about if my heart is involved, do I have PHT, what is the actual pain in my chest caused from, and so on.

Anyway, I plan to have a good weekend and try to enjoy "the moment". Projecting into the future has been ruining my "right now"!

Hope your day goes well!

Sher Bauman <bofuswbcable (DOT) net> wrote:

....as always, we're glad to have you with us but not glad you need to be here.

Hang around. You say you've been reading hundred of posts so you know what names are the board a lot. Bruce leaves tomorrow for an extended trip into June but he is our groovy guru. There are many here who know so much but some of them don't post so much anymore.

Unfortunately, it is not unusual for us to have from unpleasant to horrid stories about the drs who treat us. I do think some of it is because they simply don't know enough about this disease and hate to tell us there is nothing that can be done.

Nevertheless they can be kind and helpful and some of them aren't even that!

I was dx(diagnosed) 3-06 w/IPF and two years later I've remained stable so now the dx is NSIP. No treatment, nothing changed so guess it doesn't really make any difference what it's called.

I am on O2 at night and during the day w/exertion.

You have been through a lot and I hope some answers are soon coming. Do see a good pulmonologist and DO get a second opinion.

Stay with us. You'll like us.

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!

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.

E-mail for the greater good. Join the i’m Initiative from Microsoft.

[Guest guest]

... As to my 'initial treatment' after dx....there wasn't any to speak of, nor is there any now other than O2.

The first thing my pulmonologist did that was directly related to IPF was recommend NAC... N-Acetyl Cysteine, a food supplement actually. (I did have a persistent cough and spit up gunk at first).

NAC is recommended by many drs and many here on the board take it. You can buy it at www.puritansales.com . It is extremely affordable and did help my cough. (600 mg 1 - 3X/day)I stopped taking it after a few months...and started taking it again lately because of some chest congestion....I'll see if it helps.

I also went through the typical 6 minute walk, Cscans and PFTs (pulmonary function tests). My dx was changed last month from IPF to NSIP simply because IPF progresses and I have been stable since 3-06. There are over 200 strains of PF and I'm learning no two drs seem to agree on treatment. DON'T let anyone rush you into a lung bio w/o lots of pre-testing and questions/answers from the board!

What is the reason you are not seeing a pulmonologist now? Do get an appt. ASAP and then get a SECOND opinion. Did your pcp put you on prednisone and why?

I know there are so many questions. Most will probably be answered better by others. Since I've been stable I haven't had to go on meds (like prednisone), which I won't take anyway. The side effects are too severe for me to try it.And I sure don't need the weight gain that comes with it!

Currently I take no meds for the disease process. I use O2 on exertion and at night with my cpap machine....I have sleep apnea.

Dr and I were concerned about my heart too. I have arrhythmia and we did all the heart tests...even to heart cath and I'm glad to know my heart is fine!!

When you get with a good pulmonologist you can address all these worries...or your pcp could send you to a cardiologist.

It's nearly impossible not to 'project' and worry but do try not to borrow trouble by worrying. There are heaps of answers for everything that concerns you. A lot of answers here on the board and Beth is a nurse so she is great help. Bruce is so good about helping, no matter what the subject...as I said, he is on a trip right now.

Have a good weekend!

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!

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]

Hello, , We are two peas in a pod! I was having deep chest pains also, but this week they've lessened. Two weeks ago they were pretty intense and I went to PCP who is getting me through until I find an acceptable pulmonologist. He did another X-ray and said that I had improved since I had been on the prednisone. He said he saw something a little unusual in one area and said I could only find what it was through another CT scan, but warned me of signs of a clot. He didn't want to order that knowing that new dr. will probably want to do again. Both my former pulmonologist and rheumatologist agreed on prednisone as the first attack (60 mgs. daily). Rheumatologist said she will start weaning me off that amount, but I don't know when. How long were you on prednisone and at what dosage? Was it hard getting off? I have bought a book on all the poop about the drug . I'm on as much as a salt-free,

sugar-free diet as I can to combat the harsh effects. I am still so skinny with loss of 25 pounds of fat and muscle from my weight loss in the past 5 months. I know I need to eat, but keep thinking I'll blimp out like I've read of people doing. It could also turn me into a diabetic and to having osteoporosis. If it helps slow this lung thing, it will be worth it.....maybe? The thing in life that's the most taxing right now is trying to figure out so many things on our own in between medical red tape. Thank goodness we did land here! What meds are you currently on? I think I read that you are on some asthma meds? Klisser wrote: Hi ! welcome! I am new here too and have found more answers than i do at my doctors.I have another question to all. Those chest pains, the best discription for the ones I have is that they feel like a"charlie horse" they stopped after the prednisone treatment in january08 but seemed to start to creep back in April, not as much as before the prednisone until yesterdaythis morning they were one after the other bringing tears, and that unsureness "do I dial 911 or not?"but the last half hour they seemed to have ceased. What the hell is happening when we feelthat? With Warm Regards, Ali Klisser"Be who you are, & say what you feel, because those who mind don't matter, & those who matter don't mind." ~Dr. Suess ~ To: Breathe-Support From: elisacoleDate: Fri, 16 May 2008 08:09:34 -0700Subject: Re: So glad I've found you all! Sher, Thanks so much for the welcome! I do have a huge amount of questions and will be throwing those out. I have read that you are almost 70 and hope to have a BIG party! I hope

to help you celebrate when it gets here. If you could tell me anything about your initial treatment when first diagnosed, that might be helpful. I seem to be breathing fine most of the time and after four months of coughing night and day, it's stopped for the most part. Without a new pulmonologist yet, though, I know of no reasons or documentation to say why. I am on prednisone, so sleeping is bad. I lay awake and think about if my heart is involved, do I have PHT, what is the actual pain in my chest caused from, and so on. Anyway, I plan to have a good weekend and try to enjoy "the moment". Projecting into the future has been ruining my "right now"! Hope your day goes well! Sher Bauman

<bofuswbcable (DOT) net> wrote: ....as always, we're glad to have you with us but not glad you need to be here. Hang around. You say you've been reading hundred of posts so you know what names are the board a lot. Bruce leaves tomorrow for an extended trip into June but he is our groovy guru. There are many here who know so much but some of them don't post so much anymore. Unfortunately, it is not unusual for us to have from unpleasant to horrid stories about the drs who treat us. I do think some of it is because they simply don't know enough about this disease and hate to tell us there is nothing that can be done. Nevertheless they can be kind and helpful and some of them

aren't even that! I was dx(diagnosed) 3-06 w/IPF and two years later I've remained stable so now the dx is NSIP. No treatment, nothing changed so guess it doesn't really make any difference what it's called. I am on O2 at night and during the day w/exertion. You have been through a lot and I hope some answers are soon coming. Do see a good pulmonologist and DO get a second opinion. Stay with us. You'll like us. 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! 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. E-mail for the greater good. Join the i’m Initiative from Microsoft.

[Guest guest]

Hi, ! I'm not grading anyone's work, so don't you worry! I've noticed I have made some typos myself because I fly through these without spell check. The importance is that the message comes through. I'm trying to get down to smaller posts, but have always been a "wordy" person. People have already helped me so much with great info. Nice to meet you, , and I'm glad you're here to talk to. STEPHEN R WILSON wrote: , 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" <elisacole>Reply-To: Breathe-Support To: Breathe-Support 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.