Re: Re: ILD/Pulm. Fibrosis

[Guest guest]

Joy... Can you have a good enough reason for not seeing a cardio man yet???

Go Joy go...

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

Re: Re: ILD/Pulm. Fibrosis> To: Breathe-Support > Date: Saturday, February 28, 2009, 3:11 PM> > > > > > > Quoting "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>:> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said that you live in Oregon. My pulmo dr. is in Spokane. His name is Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also new to this list. As far as I can tell the nearest IPF center is at the University of Wahington near Seattle. I lived on Port Orchard Wa. for 40 years. My children, grandchildren and greatgrandchild all live around there. I am planning on selling my house and moving back there. This summer I hope. I need to be near my children now. Since we are so close maybe we can meet sometine. Did you say how old you are? Beverley Joy>

[Guest guest]

Jan, I don't know if you will get this as I was just notified by Yahoo that I violated some rule. It has to be a mistake but it is still hurtful. I have been reading a lot and there is much research to suggest the GERD and Sjogrens can be factors. Since I have both I think one of my 7 docs should have been paying closer attention but in reality it would not have made much difference. My sputum report said massive infection so I am on antibiotics now. Had my ct today and they gave me a cd and I will get the report tomorrow. My pulmo guy is taking March off so I guess he'll tell me his take then. It is all very scary. I hope Yahoo doesn't kick me off this site as it has helped me so much already. Sunny

From: Jan

Sent: Monday, March 02, 2009 10:17 AM

To: Breathe-Support

Subject: Re: ILD/Pulm. Fibrosis

> Hi, RPickle Most patients have lost at least 50% of their lung capacity by the time they are diagnosed with PF Is that because we wait too long to see a doctor, thinking we are just out of shape or we are just tired....or maybe the doctor we see just doesn't pick up on it right away...no one knows why it takes so long to get diagnosed. Maybe it is just that we do not feel the symptoms until we have had the disease for a while and lose our lung function...I know it took three months for me to get diagnosed because medical standards require you to see a primary care doc, then with sob symtoms he sends you to a cardiologist for heart testing and if they find nothing it is on to a pulmonologist for lung testing. My lung doctor was excellent, but every test kept coming back normal even though my pulse ox was below 90 and I could barely speak a complete sentence. Not until he had done three Cat Scans (all normal) did he finally order a High Resolution Cat Scan, which showed the scarring and we went on to an open lung biopsy which gave the final answer of PF.You have a lot of autoimmune issues of which PF fits right in there! They keep trying to blame my PF on my having Crohns disease, another autoimmune disease....however my GI says he has never, ever seen Crohns causing PF or any other lung problem in his whole career....so I don't really think it is. Once you get one autoimmune it is possible to develop others...as you and I both have found out. It just means our autoimmune system is out of whack and again, no one knows how to make it work right again either. Most people with PF or any other inflammatory disease will always have a high Sed Rate. It is in itself a marker for high much inflammatory processes are going on inside you. With a patient with Rheumatoid Artheritis, a Sed Rate abnormally high, means their arthritis is very active at that point and is why their pain level is higher than normal, etc.I sure wish you didn't have to suffer with all this, just know you are in good company here and there are a lot of people who have traveled this road ahead of you, that can answer and lend you support !> > t> > Subject: ILD/Pulm. Fibrosis> To: Breathe-Support > Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.>

[Guest guest]

Good to see you back. Is there any chance that you don't have IPF? I haven't been offered any records of anything. Maybe I'm going to the wrong doctor. I like Dr. Purerrherr? though. He is in the Holy Family Hospital. Where is Dr. Elmer? Is he a pulmo dr.I will send you an E-mail tomorrow. It is getting late for me. Beverley, 70, IPF

Re: ILD/Pulm. Fibrosis

Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunny rt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy>

[Guest guest]

It sounds like you have been getting the same kind of medical treatment that I have gotten since I moved here. Beverley

ILD/Pulm. Fibrosis> To: Breathe-Support > Date: Saturday, February 28, 2009, 12:05 AM> > > > I have just been told by my pulmonologist that I have Idiopathic Interstitial Lung Disease and that I have lost 60% of my lung function. I also have ground glasslike nodules in my lungs and much scarring. I am a 51 year old female who until 4 years ago had an extremely active life. Then it all started with seizures, headaches, joint pain and fatigue. After many, many tests I was told I had Lupus then shortly after was diagnosed with Sjogrens then arthritis. Lots of auto immune stuff. I have been on Prednisone every since. Without it the pain is just too much. My sed rate and CRP are always a mess. Then my right thyroid grew a huge benign tumor which had to be removed and now have to take synthroid for that. I have had 4 gastric bleeding hPylori bacteria ulcers in the past four years. I am currently recovering from the last. Scope showed the ulcer gone but the bacteria still very much there. The the gastro doc told me I have> Barrett's Disease probably caused by my GERD which they can not seem to get under control. The odds are 1 in 100 people's Barrett's will turn cancerous. There is no treatment once that happens. But then again out of the millions of people in the US only 100,000 get Barrett's. It is supposed to be a slow progressive disease but I was clear then 2 months later my throat is speckled with Barrett's. That is one of the reasons I am so worried about the ILD diagnoses. Until 3 months ago my lungs felt fine. Now I have a hacking cough with lots of sputum, my lungs hurt, I cough up blood and upon awaking in the morning I feel like I'm drowning. I have read that ILD is a slow progressive disease as well but it doesn't seem to be that way with me. I read that ILD can be caused by GERD and auto immune diseases. Does any one know if this is accurate? They haven't put me on oxygen but I am having a whole bunch of other tests done next week. Does> any one have a guess as to how much lung function I will lose before they put me on oxygen? Any information about ILD that anyone can share would help. My doctor is always so in and out that I feel totally adrift. Thank you.>

[Guest guest]

Sunny

i am glad they found out what is wrong and are treating it.

Can you talk to another doc about the o2 SATs? Write down your data: o2 at rest, o2 when walking, etc. bring it with you, question the doc about the need for o2.

maybe, hopefully, when the infection clears up, your SATs will improve.

not being a doc, i don't know what the answers will be

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Thursday, March 5, 2009, 12:51 AM

Joyce, I think the pain I am having is probably caused by the massive infection they found when they checked my sputum. Anyway now I am on antibiotics so hopefully it will get better. I had my lung ct today and they gave me a cd of the test and I will pick up the narative tomorrow. My friend has an oximeter and we checked my O2. If I am sitting still or only walk a short distance I am okay but after that my SATS drop quickly. I am still uncertain why my doc didn't put me on O2 but I did find out today that he is taking the month of March off so I won't get to talk with him until April. It is very frustrating. Sunny IPF 03/09> > From: sparrow4@... <sparrow4@.. .>> Subject: Re: Re: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 3:11 PM> > > > > > > Quoting "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>:> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter

cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It

seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said that you live in Oregon. My pulmo dr. is in Spokane. His name is Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also new to this list. As far as I can tell the nearest IPF center is at the University of Wahington near Seattle. I lived on Port Orchard Wa. for 40 years. My children, grandchildren and greatgrandchild all live around there. I am planning on selling my house and moving back there. This summer I hope. I need to be near my children now. Since we are so close maybe we can meet sometine. Did you say how old you are? Beverley Joy>

[Guest guest]

Sunny

i am glad they found out what is wrong and are treating it.

Can you talk to another doc about the o2 SATs? Write down your data: o2 at rest, o2 when walking, etc. bring it with you, question the doc about the need for o2.

maybe, hopefully, when the infection clears up, your SATs will improve.

not being a doc, i don't know what the answers will be

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Thursday, March 5, 2009, 12:51 AM

Joyce, I think the pain I am having is probably caused by the massive infection they found when they checked my sputum. Anyway now I am on antibiotics so hopefully it will get better. I had my lung ct today and they gave me a cd of the test and I will pick up the narative tomorrow. My friend has an oximeter and we checked my O2. If I am sitting still or only walk a short distance I am okay but after that my SATS drop quickly. I am still uncertain why my doc didn't put me on O2 but I did find out today that he is taking the month of March off so I won't get to talk with him until April. It is very frustrating. Sunny IPF 03/09> > From: sparrow4@... <sparrow4@.. .>> Subject: Re: Re: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 3:11 PM> > > > > > > Quoting "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>:> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter

cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It

seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said that you live in Oregon. My pulmo dr. is in Spokane. His name is Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also new to this list. As far as I can tell the nearest IPF center is at the University of Wahington near Seattle. I lived on Port Orchard Wa. for 40 years. My children, grandchildren and greatgrandchild all live around there. I am planning on selling my house and moving back there. This summer I hope. I need to be near my children now. Since we are so close maybe we can meet sometine. Did you say how old you are? Beverley Joy>

[Guest guest]

Sunny

i am glad they found out what is wrong and are treating it.

Can you talk to another doc about the o2 SATs? Write down your data: o2 at rest, o2 when walking, etc. bring it with you, question the doc about the need for o2.

maybe, hopefully, when the infection clears up, your SATs will improve.

not being a doc, i don't know what the answers will be

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Thursday, March 5, 2009, 12:51 AM

Joyce, I think the pain I am having is probably caused by the massive infection they found when they checked my sputum. Anyway now I am on antibiotics so hopefully it will get better. I had my lung ct today and they gave me a cd of the test and I will pick up the narative tomorrow. My friend has an oximeter and we checked my O2. If I am sitting still or only walk a short distance I am okay but after that my SATS drop quickly. I am still uncertain why my doc didn't put me on O2 but I did find out today that he is taking the month of March off so I won't get to talk with him until April. It is very frustrating. Sunny IPF 03/09> > From: sparrow4@... <sparrow4@.. .>> Subject: Re: Re: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 3:11 PM> > > > > > > Quoting "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>:> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter

cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It

seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said that you live in Oregon. My pulmo dr. is in Spokane. His name is Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also new to this list. As far as I can tell the nearest IPF center is at the University of Wahington near Seattle. I lived on Port Orchard Wa. for 40 years. My children, grandchildren and greatgrandchild all live around there. I am planning on selling my house and moving back there. This summer I hope. I need to be near my children now. Since we are so close maybe we can meet sometine. Did you say how old you are? Beverley Joy>

[Guest guest]

Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :> > > Joyce, I live in a tiny town called Rathdrum Oregon.  My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.  How do you> > find a teaching hospital and how do you approach them?  Also how much> > does an oximeter cost.  We me not working and all the medical bills> > we are in very poor financial shape.  I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.  They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.  Do I ask my pulmodoc for a referral for a second opinion> > or my primary?  I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.  You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.  I also wonder if in the morning or if lying in certain> > positions makes things worse.  I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.  It seems like the pain in> > my lungs is much worse lying on my right side.  Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy>

[Guest guest]

Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :> > > Joyce, I live in a tiny town called Rathdrum Oregon.  My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.  How do you> > find a teaching hospital and how do you approach them?  Also how much> > does an oximeter cost.  We me not working and all the medical bills> > we are in very poor financial shape.  I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.  They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.  Do I ask my pulmodoc for a referral for a second opinion> > or my primary?  I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.  You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.  I also wonder if in the morning or if lying in certain> > positions makes things worse.  I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.  It seems like the pain in> > my lungs is much worse lying on my right side.  Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy>

[Guest guest]

Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.  Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :> > > Joyce, I live in a tiny town called Rathdrum Oregon.  My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.  How do you> > find a teaching hospital and how do you approach them?  Also how much> > does an oximeter cost.  We me not working and all the medical bills> > we are in very poor financial shape.  I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.  They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.  Do I ask my pulmodoc for a referral for a second opinion> > or my primary?  I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.  You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.  I also wonder if in the morning or if lying in certain> > positions makes things worse.  I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.  It seems like the pain in> > my lungs is much worse lying on my right side.  Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy>

[Guest guest]

Sunny... when you come to Oregon to what area do you come? I live about 25mi South of Portland... if you come this way again, maybe we can meet up.

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

Re: ILD/Pulm. Fibrosis

Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunny rt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :> > > Joyce, I live in a tiny town called Rathdrum Oregon. My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID. How do you> > find a teaching hospital and how do you approach them? Also how much> > does an oximeter cost. We me not working and all the medical bills> > we are in very poor financial shape. I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge. They say it> > might take another 17 months but with this new diagnoses things may> > go quicker. Do I ask my pulmodoc for a referral for a second opinion> > or my primary? I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time. You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically. I also wonder if in the morning or if lying in certain> > positions makes things worse. I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all. It seems like the pain in> > my lungs is much worse lying on my right side. Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard, > Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said > that you live in Oregon. My pulmo dr. is in Spokane. His name is > Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also > new to this list. As far as I can tell the nearest IPF center is at the > University of Wahington near Seattle. I lived on Port Orchard Wa. for > 40 years. My children, grandchildren and greatgrandchild all live > around there. I am planning on selling my house and moving back there. > This summer I hope. I need to be near my children now. Since we are so > close maybe we can meet sometine. Did you say how old you are? Beverley > Joy>

[Guest guest]



Peggy...speaking of teaching hospitals...I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept.

We're not all that far from Seattle so I think I should do this too.

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

Re: Re: ILD/Pulm. Fibrosis

Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�

Love & Prayers, Peggy

Florida, �IPF/UIP 2004

"I believe that friends are quiet angels�who lift us to our feet,�

when our wings�have trouble remembering how to fly."�

Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy>

[Guest guest]

Sher, I called the radiology department and ask them to send me my ct's and x rays and they were here with in a week.I think it is a good idea for you. Oh I hope you don't have to wait to long. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Peggy...speaking of teaching hospitals...I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept.We're not all that far from Seattle so I think I should do this too.MamaSher; 70,  IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. FibrosisSunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�Love & Prayers, PeggyFlorida, �IPF/UIP 2004"I believe that friends are quiet angels�who lift us to our feet,�when our wings�have trouble remembering how to fly."�<3DF4D323-E730-4BCB-80BA-A76CD055F8DA>On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote:Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy>

[Guest guest]

Sher, I called the radiology department and ask them to send me my ct's and x rays and they were here with in a week.I think it is a good idea for you. Oh I hope you don't have to wait to long. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Peggy...speaking of teaching hospitals...I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept.We're not all that far from Seattle so I think I should do this too.MamaSher; 70,  IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. FibrosisSunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�Love & Prayers, PeggyFlorida, �IPF/UIP 2004"I believe that friends are quiet angels�who lift us to our feet,�when our wings�have trouble remembering how to fly."�<3DF4D323-E730-4BCB-80BA-A76CD055F8DA>On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote:Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy>

[Guest guest]

Sher, I called the radiology department and ask them to send me my ct's and x rays and they were here with in a week.I think it is a good idea for you. Oh I hope you don't have to wait to long. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  Peggy...speaking of teaching hospitals...I've sent in my requested records/tests to University of Washington (Dr. Ragu) and hopefully will get in about Aug or Sept.We're not all that far from Seattle so I think I should do this too.MamaSher; 70,  IPF 3-06, OR.   NasturtiumsDon't fret about tomorrow, God is already there! Re: Re: ILD/Pulm. FibrosisSunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�Love & Prayers, PeggyFlorida, �IPF/UIP 2004"I believe that friends are quiet angels�who lift us to our feet,�when our wings�have trouble remembering how to fly."�<3DF4D323-E730-4BCB-80BA-A76CD055F8DA>On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote:Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy>

[Guest guest]



Peggy...I hope it's not a long wait too but at least the ball is rolling. My cds went out yesterday and hopefully the pulmodude did his part too. I'll check tomorrow.

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

Re: Re: ILD/Pulm. Fibrosis

Sunny, I am glad they offered you the cd. You should keep a copy of all your tests and ct's. Also if there is a University teaching Hospital near you that would be the place to go.�

Love & Prayers, Peggy

Florida, �IPF/UIP 2004

"I believe that friends are quiet angels�who lift us to our feet,�

when our wings�have trouble remembering how to fly."�

<3DF4D323-E730-4BCB-80BA-A76CD055F8DA>

On Mar 5, 2009, at 12:46 AM, sunnypickel (AT) ymail (DOT) com wrote:

Oops I was just in a little shock. We had just returned from a trip to Oregon soooo... Anyway I am 51 and see Dr. Elmer in Spokane. The called yesterday to tell me that my sputum showed vast amounts of infection and put me on an antibiotic. 7 pills $170 with my insurance. Had my CT today and was shocked when they offered me a cd of the test and I can pick up the radiology report tomorrow. Things have sure changed from the old days when they were so secretive. Joy I would love to meet for lunch sometime. Just e-mail me and I will give you my number. Sunnyrt , sparrow4@... wrote:>> Quoting "sunnypickel@..." :>�> > Joyce, I live in a tiny town called Rathdrum Oregon.� My doctors are> > in Spokane WA but we are closer to Coeur d' Alene, ID.� How do you> > find a teaching hospital and how do you approach them?� Also how much> > does an oximeter cost.� We me not working and all the medical bills> > we are in very poor financial shape.� I applied for Social Security 3> > years ago and after 2 denials am waiting on a judge.� They say it> > might take another 17 months but with this new diagnoses things may> > go quicker.� Do I ask my pulmodoc for a referral for a second opinion> > or my primary?� I do not want to make my current pulmo guy mad as it> > took me sooooooooooo long just to see him the first time.� You are> > correc the my pulse ox is okay at rest but moving around changes that> > drastically.� I also wonder if in the morning or if lying in certain> > positions makes things worse.� I wake up drowning out of breath and> > my lungs hurt so bad. It takes quite a while of just sitting up> > before I can draw very much breath at all.� It seems like the pain in> > my lungs is much worse lying on my right side.� Is this my> > imagination do you think?> >> Sunny, I don't mean to tell you where you live but I live in Blanchard,�> Idaho. Not far from Rathdrum, Idaho and near Coeur'd'Alene. You said�> that you live in Oregon. My pulmo dr. is in Spokane. His name is�> Puruckherr. Who do you go to? I was just diagnosed Jan.6, so I am also�> new to this list. As far as I can tell the nearest IPF center is at the�> University of Wahington near Seattle. I lived on Port Orchard Wa. for�> 40 years. My children, grandchildren and greatgrandchild all live�> around there. I am planning on selling my house and moving back there.�> This summer I hope. I need to be near my children now. Since we are so�> close maybe we can meet sometine. Did you say how old you are? Beverley�> Joy>