Re: Re: ILD/Pulm. Fibrosis

February 28, 2009

Sunny,

I don't have IPF. I have NSIP (non-specific interstitial pneumonitis). Many auto-immune diseases Lupus and Sjorgren's among them have interstitial lung disease as a known complication. My auto-immune disease, dermatomyositis, is among them. In that case my lung disease is not idiopathic because the cause is known. All idiopathic pulmonary fibrosis means is that there is lung scarring and the cause is not known. I would strongly urge you to get another opinion about your lung disease. It seems you've been labeled as having IPF without alot of evidence.

It really worries me that you feel your pulmonologist is too busy to answer your questions and concerns. You need answers and deserve to be treated with dignity and respect. I don't know if you saw my earlier post addressed to you but you can find university medical centers with ILD specialists at www.ipfnet.org. There are others of course but these 16 are coordinating their research and efforts. Please remember that you can go to one of these, spend a day or two being evaluated and then take their recommendations back to your doctor at home. That's what many people do.

Please lose the guilt over smoking. What's done is done and let's face it you would make a different choice if you knew then what you know now. Besides with your other medical issues it seems unlikely that smoking was the thing that caused your lung disease. I know it didn't cause mine because I never smoked. Not smoking is no guarantee of anything so stop beating yourself up!

I hope I didn't come on too strong. It just pains me to see someone suffering and blaming themselves for it. A knowledgable, compassionate doctor can be your best friend. It's worth the effort to find one.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, February 28, 2009 10:34:55 AMSubject: Re: ILD/Pulm. Fibrosis

Beth, What made your doctor think your IPF was caused by the auto immune disease? After looking at lots of sites no one seems to agree but Lupus and Sjogrens are mentioned as likely causes but so is smoking and unfortunately I did that for 20 years. I have been feeling guilt consumed that I did this to myself by smoking so deserve it somehow. It has been very depressing and makes me not want to tell a sole that knows I used to smoke because I don't want to hear what they might say. Sunny> > From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> 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.>

February 28, 2009

Sunny...I am also in Oregon. We're South of Ptld about 25 miles, off I-5. You must be way eastern...never heard of Rathdrum.

When the weather gets nicer my husband Rich and I want to take a trip to ph.

No special reason, just want to see the country there. Come back through Shaniko and visit some of the old ghost towns.

I would not think these things are 'your imagination'. It's pretty obvious when we can't breathe.

Where is your nearest hospital?

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

ILD/Pulm. Fibrosis> > > > > 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.>

February 28, 2009

Sunny...I am also in Oregon. We're South of Ptld about 25 miles, off I-5. You must be way eastern...never heard of Rathdrum.

When the weather gets nicer my husband Rich and I want to take a trip to ph.

No special reason, just want to see the country there. Come back through Shaniko and visit some of the old ghost towns.

I would not think these things are 'your imagination'. It's pretty obvious when we can't breathe.

Where is your nearest hospital?

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

ILD/Pulm. Fibrosis> > > > > 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.>

February 28, 2009

Sunny - For about 28 years, my last name was Belch. I wasn't born with it either, and was always amused by how hard many people tried to alter the pronunciation to something other than Belch. I go Belsh, Belche, Belsher, Belk - sometimes even Burp. As - those were the days. LOL

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Saturday, February 28, 2009 12:35:10 PMSubject: Re: ILD/Pulm. Fibrosis

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you

live?> Others will reply who have more knowledge than I do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

Sunny - For about 28 years, my last name was Belch. I wasn't born with it either, and was always amused by how hard many people tried to alter the pronunciation to something other than Belch. I go Belsh, Belche, Belsher, Belk - sometimes even Burp. As - those were the days. LOL

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Saturday, February 28, 2009 12:35:10 PMSubject: Re: ILD/Pulm. Fibrosis

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you

live?> Others will reply who have more knowledge than I do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

Sunny...are you in Oregon or Idaho? You've written both. If you are near C d' A then I imagine you sure are in Idaho. ;o)

I just fume inside when any dr doesn't give enough time. Are you able to tell him at the beginning of a visit that you feel rushed and have questions???

I'd think Cd'A would have some pulmonologists there.

I've been thinking myself about going up to Seattle. It's about a 3+ hr drive and it's been in my mind lately to do that.

Be your own best advocate...find a dr you feel good about!

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

ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

Sunny...are you in Oregon or Idaho? You've written both. If you are near C d' A then I imagine you sure are in Idaho. ;o)

I just fume inside when any dr doesn't give enough time. Are you able to tell him at the beginning of a visit that you feel rushed and have questions???

I'd think Cd'A would have some pulmonologists there.

I've been thinking myself about going up to Seattle. It's about a 3+ hr drive and it's been in my mind lately to do that.

Be your own best advocate...find a dr you feel good about!

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

ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

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

February 28, 2009

Sunny...yes, I know the area. It is truly beautiful. My daughter Lysa's in-laws live in Veradale and the kids would LOVE to move to Cd'A...

Moving from Vancouver makes you aware of my area too. If you are ever down this way give me a call or email me at

bofus@... and perhaps we can have lunch.

In my opinion, depression is a part of every serious/fatal illness. Many here on the board take anti-depressants including me.

I was on Cymbalta which worked so well for me but I could no longer afford it since it's not generic.

Last year my Rxs threw me into the donut hole with insurance and we had to buy full price after August. That was hard to do, our savings went down some thousands of dollars.

I'm still not sure how we did it. God has mercy for sure.

But this year, I discontinued Cymbalta for Celexa...it's a generic. It isn't working so well yet but I haven't been on it very long.

If you have problems w/what you think is depression ask your 'minute man' to give you a Rx for something. We need all the support we can muster Sunny...medical or otherwise.

I know it's hard on your Rich. It does get easier to cope with after awhile. I guess acceptance of what we cannot change strengthens up our coping skills.

I read all your posts even tho' I don't reply each time...someone usually answers with more info...

I'm sorry you are going through so much.

Keep on keepin' on!

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

ILD/Pulm. Fibrosis> > > > > > > > > > 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.> >>

February 28, 2009

Hello Sunny, I already answered this post but I didn't get a reply. I think that I don't always get seen because with my localnet I have to put my reply underneath the original post. I am going to send this from windows mail and see if it goes through. It wouldn't go withoutlook express. In case you didn't see it I live in Blanchard so I knew that you were in Idaho. We aren't far from each other. Your tiny town is huge compared to Blanchard. Beverley Joy

Re: ILD/Pulm. Fibrosis

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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?

February 28, 2009

Sunny, Yes, depression comes along for the

ride!!! I'm sorry that it has hit you!

Your medical circumstances would make anyone depressed. Be kind to

yourself,

and don't beat yourself up for feeling down. Tomorrow is another day

and " the sun will come out tomorrow"...

Sorry I just had to type that!

Z fibriotic NSIP/05

Z 65,

fibriotic NSIP/o5/PA

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

sunnypickel@... wrote:

Sher, Rathdrum is in Idaho about 15 miles north of Spokane, WA. It

is

lovely here. We live at the base of a beautiful mountain and get to

see elk, moose, deer, bald eagles, hawks and nature unsullied. There

are only about 4,000 people in Rathdrum and everyone we have met has

been so friendly. Funny, my husband's name is also Rich. Our closest

hospital is in Coeur d' Alene, ID but I usually go in to Spokane

where there are four different hospitals. But I think for my second

opinion I am going to go to the teaching hospital in Seattle. We

moved here from Vancouver, WA and my husband still has lots of family

there and in White Salmon. I wonder if depression is part of IPF as

today has been a rough one for me. I feel cheated by my doctor for

not explaining more. I am not comfortable telling anyone yet as I

want to have the other tests and see someone else first so it's just

me and my husband. He is in denial most of the time or treats me

like I might break any minute. I guess I am just very scared because

every one of my illness' have progressed much faster than any of the

doctors thought. This IPF thing happened over a much shorter period

of time than it seems to have progressed with most others. I mean

losing 60% in a year and the nasty systems just started a few months

back and get worse every day. Well, I guess I just have to leave it

in God's hands. In heaven there are no tears or pain so no worries.

Right

> >

> > From: rpickel1@ <rpickel1@>

> > Subject: Re: ILD/Pulm. Fibrosis

> > To: Breathe-Support

> > Date: Saturday, February 28, 2009, 4:13 AM

> >

> > Hi Margaret,

> >

> > This site is so wonderful. I can't believe I have gotten so

many

> nice replies so quickly. My name is Sunny and I used to live up

to

> it but the last few years have slowed down my laugh track. My

> pulmdoc found the glass last year but didn't think it worth doing

a

> biopsy since I did not have any symptoms and had 100% lung

function.

> I will find out next week if there are more of the nodules than

> before. I have seen the ground glass nodules mentioned on some

med

> sites. I think maybe webmd but I had googled ILD and looked at a

lot

> of sites. They did tell me I had COPD last year and put me on

oxygen

> but I improved so much in 5 months he took me off it. My O2 at

rest

> is about 98% but drops significantly when walking. I think he is

> just waiting for the CT and sputum reports before he starts any

> treatment. Since I am already on Prednisone and that seems to be

the

> first line of treatment for ILD I think he's just being

conservative

> then again he

> > only spent about 2 minutes with me and seemed confused and a

> little angry when I started crying after the diagnoses. When he

said

> I had already lost 60% lung capacity I was freaked. My disease

seems

> to be progressing much more rapidly then usual. I can deal with

the

> shortness of breath much easier than I can the chest pain and

> coughing. I am hoping he will do something about that when I see

him

> next. I am also considering getting a second opinion since my

doc

> doesn't seem to have time or compassion. Don't hesitate to write

if

> you think I can help in any way.

> >

> > Sunny

> >

> > From: Margaret McConnell

> > Sent: Friday, February 27, 2009 10:21 PM

> > To: Breathe-Support@ yahoogroups. com

> > Subject: Re: ILD/Pulm. Fibrosis

> >

> > Hi 'rpickel', do you have another name?

> >

> > You are the first that I have heard use the term 'ground

glass'

on

> this board, that was one of my first PH symptoms. I was diagnosed

> with pneumonitis in 97, PH in 06, COPD and PF most recently. I

was at

> 43% lung capacity the first time they gave me a PFT. They called

my

> pulmonologist immediately and sent me home with oxygen 24/7 right

> then at 2lt. We say that we are all different but I would say

from my

> experience that you need oxygen NOW, especially with all of your

> other physical problems. Our bodies need the oxygen to function

and

> heal properly. I do not have GERD or any autoimmune disease but

> others on the board do and can tell you more about them.

> >

> > I am relatively new on the board but can tell you that there

is

> alot of information to be found for your questions. I hope they

give

> you oxygen on your next visit, I have a nifty liquid oxygen back

> pack. I was very active before also. I would also add not to rush

or

> be in a hurry, allow extra time and go slow, breath in through

your

> nose and out through pursed lips so that you don't end up gasping

> like a fish out of water...like I did...

> >

> > Margaret

> >

> > From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>

> > To: Breathe-Support@ yahoogroups. com

> > Sent: Friday, February 27, 2009 8:05:21 PM

> > Subject: ILD/Pulm. Fibrosis

> >

> > 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.

> >

>

No virus found in this incoming message.

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February 28, 2009

Barb, that was funny - I also had to tell everyone how to spell my married name at the time which was "CARD" lol, Ginny Ginny, IPF6-08,COPD5-98,Richmond,VA

To: Breathe-Support Sent: Saturday, February 28, 2009 12:45:24 PMSubject: Re: Re: ILD/Pulm. Fibrosis

Sunny - For about 28 years, my last name was Belch. I wasn't born with it either, and was always amused by how hard many people tried to alter the pronunciation to something other than Belch. I go Belsh, Belche, Belsher, Belk - sometimes even Burp. As - those were the days. LOL

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 12:35:10 PMSubject: Re: ILD/Pulm. Fibrosis

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you

live?> Others will reply who have more knowledge than I do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

Sunny, When I lived in Washington I went to UW. It was huge back then, make sure they send a good map. The doctor I saw was world renowned. I had heard him do a presentation on PBS and knew he was the one I wanted to see. He was elderly then but really knew everything there was to be known about his field.

I know you will be in good hands there.

Margaret

To: Breathe-Support Sent: Saturday, February 28, 2009 9:29:50 PMSubject: Re: Re: ILD/Pulm. Fibrosis

Barb, that was funny - I also had to tell everyone how to spell my married name at the time which was "CARD" lol, Ginny Ginny, IPF6-08,COPD5- 98,Richmond, VA

From: Barbara McD <bamny (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 12:45:24 PMSubject: Re: Re: ILD/Pulm. Fibrosis

Sunny - For about 28 years, my last name was Belch. I wasn't born with it either, and was always amused by how hard many people tried to alter the pronunciation to something other than Belch. I go Belsh, Belche, Belsher, Belk - sometimes even Burp. As - those were the days. LOL

B

Barbara McD

IPF, Sept 08

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

From: "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 12:35:10 PMSubject: Re: ILD/Pulm. Fibrosis

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you

live?> Others will reply who have more knowledge than I do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

February 28, 2009

Sunny, I had depression even before all of the lung conditions came along. I take lexapro 20mg & wellbutrin xl 450mg and still have some pretty bad days. Sometimes I stay in bed reading or watching TV or don't go out of the house for a week at the time. I have alprazolam 0.5mg for when the anxiety and stress are just too much to deal with. I have finally started putting my needs first and the world has not stopped turning. Idaho is one of the 14 states I have left to visit. I want to either drive through Canada from Alaska or take the car on the ferry to Bellingham. I need to figure out the oxygen and passport first.

To: Breathe-Support Sent: Saturday, February 28, 2009 2:25:34 PMSubject: Re: Re: ILD/Pulm. Fibrosis

Sunny...yes, I know the area. It is truly beautiful. My daughter Lysa's in-laws live in Veradale and the kids would LOVE to move to Cd'A...

Moving from Vancouver makes you aware of my area too. If you are ever down this way give me a call or email me at

bofus (AT) wbcable (DOT) net and perhaps we can have lunch.

In my opinion, depression is a part of every serious/fatal illness. Many here on the board take anti-depressants including me.

I was on Cymbalta which worked so well for me but I could no longer afford it since it's not generic.

Last year my Rxs threw me into the donut hole with insurance and we had to buy full price after August. That was hard to do, our savings went down some thousands of dollars.

I'm still not sure how we did it. God has mercy for sure.

But this year, I discontinued Cymbalta for Celexa...it' s a generic. It isn't working so well yet but I haven't been on it very long.

If you have problems w/what you think is depression ask your 'minute man' to give you a Rx for something. We need all the support we can muster Sunny...medical or otherwise.

I know it's hard on your Rich. It does get easier to cope with after awhile. I guess acceptance of what we cannot change strengthens up our coping skills.

I read all your posts even tho' I don't reply each time...someone usually answers with more info...

I'm sorry you are going through so much.

Keep on keepin' on!

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

ILD/Pulm. Fibrosis> > > > > > > > > > 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.> >>

March 1, 2009

Sunny,

An oximeter is absolutely necessary for those of us with PF or any one of its many manifestations. It can save your life.

If you are unable to afford an oximeter, send me your full name, your street address and your personal email and I will have one sent to you as a gift. Please send this info to me at JMARSHALL6867@.... Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Saturday, February 28, 2009 10:17:50 AMSubject: Re: ILD/Pulm. Fibrosis

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?> > From: rpickel1@... <rpickel1@.. .>> Subject: Re: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 4:13 AM> > > > > > > > Hi Margaret,> > This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I

did not have any symptoms and had 100% lung function. I will find out next week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he> only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My

disease seems to be progressing much more rapidly then usual. I can deal with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.> > Sunny> > > > > From: Margaret McConnell > Sent: Friday, February 27, 2009 10:21 PM> To: Breathe-Support@ yahoogroups. com > Subject: Re: ILD/Pulm. Fibrosis> > > > > > Hi 'rpickel', do you have another name?> > You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH

in 06, COPD and PF most recently. I was at 43% lung capacity the first time they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.> > I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you

don't end up gasping like a fish out of water...like I did...> > Margaret> > > > > > From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Friday, February 27, 2009 8:05:21 PM> Subject: ILD/Pulm. Fibrosis> > > > > 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.>

March 1, 2009

Sher

i lived in Boise Idaho for about 2 years, my oldest daughter was born there in 1970.

beautiful state, never did go up the panhandle

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 1:00 PM

Sunny...are you in Oregon or Idaho? You've written both. If you are near C d' A then I imagine you sure are in Idaho. ;o)

I just fume inside when any dr doesn't give enough time. Are you able to tell him at the beginning of a visit that you feel rushed and have questions???

I'd think Cd'A would have some pulmonologists there.

I've been thinking myself about going up to Seattle. It's about a 3+ hr drive and it's been in my mind lately to do that.

Be your own best advocate...find a dr you feel good about!

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

ILD/Pulm. Fibrosis> > > > 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.>

March 1, 2009

Sunny pickel

i was told that the lungs themselves do not hurt of feel pain. someone else on the board will explain it better than i can.

i don't remember if you are on supplemental o2, but it will help, it becomes your best friend

changing positions is what makes things worse for me

when i was applying for social security disabilty, my pulmonary doc said that they usually give to people who are on oxygen

i had no problem getting it. it took me a long time to gather the paper work, i made an appt., walked with O2 and no make up

the check for 6 months was in my bank account before I received the letter telling me i was approved

someone else on the board did not go for an inperson appt, she did hers over the phone and was approved quickly to

when the pulmonary who diagnosed me said he couldn't do anything for me, i called the pulmonary department at U of Pennsylvania (a teaching hospital) and took the first available appt, I think it was less than a month wait

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: ILD/Pulm. FibrosisTo: 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

March 1, 2009

Sunny pickel

i was told that the lungs themselves do not hurt of feel pain. someone else on the board will explain it better than i can.

i don't remember if you are on supplemental o2, but it will help, it becomes your best friend

changing positions is what makes things worse for me

when i was applying for social security disabilty, my pulmonary doc said that they usually give to people who are on oxygen

i had no problem getting it. it took me a long time to gather the paper work, i made an appt., walked with O2 and no make up

the check for 6 months was in my bank account before I received the letter telling me i was approved

someone else on the board did not go for an inperson appt, she did hers over the phone and was approved quickly to

when the pulmonary who diagnosed me said he couldn't do anything for me, i called the pulmonary department at U of Pennsylvania (a teaching hospital) and took the first available appt, I think it was less than a month wait

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: ILD/Pulm. FibrosisTo: 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

March 1, 2009

I feel pain when I breathe deeply also. It is a definite discomfort. I was wondering about that.Sent on the TELUS Mobility network with BlackBerryFrom: Joyce T Rosenberg Date: Sun, 1 Mar 2009 12:06:27 -0800 (PST)To: <Breathe-Support >Subject: Re: Re: ILD/Pulm. Fibrosis Sunny pickeli was told that the lungs themselves do not hurt of feel pain. someone else on the board will explain it better than i can.i don't remember if you are on supplemental o2, but it will help, it becomes your best friend changing positions is what makes things worse for me when i was applying for social security disabilty, my pulmonary doc said that they usually give to people who are on oxygen i had no problem getting it. it took me a long time to gather the paper work, i made an appt., walked with O2 and no make upthe check for 6 months was in my bank account before I received the letter telling me i was approved someone else on the board did not go for an inperson appt, she did hers over the phone and was approved quickly to when the pulmonary who diagnosed me said he couldn't do anything for me, i called the pulmonary department at U of Pennsylvania (a teaching hospital) and took the first available appt, I think it was less than a month waitPink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09www.transplantfund.orgFrom: sparrow4 (AT) localnet (DOT) com <sparrow4 (AT) localnet (DOT) com>Subject: Re: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 3:11 PMQuoting "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

March 1, 2009

Sunny pickel

when you go to the docs, take a notebook, with written questions and write down whatever the docs say

also, collect all the lab and xray reports and take them with you when going to a different doc, all of the docs should have the same info so they are all taking care of you

i have a 3 ring binder with all of the info collected since diagnosis

even the mammograms and EKGs, etc go in that book, and the pft and 6 minute walk results to

the book is to heavy to carry now, so i just carry the most recent results from doctor to doctor and then put them in the book

also, i keep a list of my meds on the computer and take the list to my appts. all of the docs know what i take for what

this way they can compare apples to apples instead of apples to oranges and you can be in charge of your health care

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 10:29 AM

Hoyce, my CRP and Sed rate were part of the critera for my Lupus and Sjogrens diagnoses. So mine abnormal blood tests in that area were there years ago when my lungs were clear. I agree with you about the O2. I believe I do need it at night and when up and around but my doc is so conservitive and busy. He was gone before I could even get an explanation of his diagnoses, a prognosis or discuss treatment. I wasn't even given the opportunity to ask if there was a way to relieve my lung pain. Unfortunately the news from him has stressed me so badly that my Lupus has started to flare from the neck down. The joint pain is unreal and today I had a horrible cramp in my leg that took forever to go away. I am wondering if low O2 could cause this as it was not a normal auto immune symptom before and only started about 3 months ago. This is all so confusing. I wish my doctors talked to each other about my

health so I could sort out what's causing different things. Oh well, if wishes were horses mine would have wings and I'd fly away.> > From: rpickel1@... <rpickel1@.. .>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> 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.>

March 1, 2009

Sunny

there are a lot of us with pf who never smoked, myself almost included

as an adolescent, i tried it a couple of times, yuk, never could understand what my friends were talking about when they discussed the different tastes, it all tasted the same to me -- bad

i do wonder about second hand smoke, i was exposed to that most of my life

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 10:34 AM

Beth, What made your doctor think your IPF was caused by the auto immune disease? After looking at lots of sites no one seems to agree but Lupus and Sjogrens are mentioned as likely causes but so is smoking and unfortunately I did that for 20 years. I have been feeling guilt consumed that I did this to myself by smoking so deserve it somehow. It has been very depressing and makes me not want to tell a sole that knows I used to smoke because I don't want to hear what they might say. Sunny> > From: rpickel1 (AT) msn (DOT) com <rpickel1 (AT) msn (DOT) com>> Subject: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> 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.>

March 1, 2009

you made me laugh

thanks

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 12:35 PM

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you live?> Others will reply who have more knowledge than I

do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

March 1, 2009

you made me laugh

thanks

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 12:35 PM

Thanks for the welcome Sher. I checked the morning and found out there is a teaching hospital in Seattle about 7 hours away. I am going to contact my insurance company and make sure it's covered but I think I can make an appointment there without a referral. I also checked in to getting an oximeter. I live in Rathdrum ID. That's about 6 miles NW of Coeur d' Alene ID and yes I have a pulmodoc that diagnosed me. I think I am going to start calling him the minute man cause that's the amount of time he give me. My name is Sunny Pickel. Yes that's right, my last name is Pickel but at least I didn't grow up with it like my husband whose name is . He was Dick Pickel in school. Luckily he is a big guy and he might have been given many high school swirlees. I am amazed at the support and quality info I have received since I signed up. Everyone here is just a blessing.>> rpickel (what is your name?)> Wow, you have been through so much. I'm sorry for the plates you have to juggle. One good thing tho' is you are in the right place for support and info.> In my case, it wasn't the lung function lost it was that the oxygen level in my blood was not enough...our levels should be above 90-91 all the time. O2 level is measured with an oximeter and many of us have our own. They can be purchased for $65 at> www.portablenebs. com they are FDA approved and work well. It's the yellow one. It just clamps on a finger...> SOB (shortness of breath) is certainly a sign you may need 02. > Are you seeing a pulmonologist?> In what State do you live?> Others will reply who have more knowledge than I

do.> But welcome, I'll watch for your posts...> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > ILD/Pulm. Fibrosis> > > > 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.>

March 1, 2009

coughing up blood makes me very uncomfortable

the "pain in your lungs" makes me uncomfortable too

get thee for a second opinion real soon

or go to the ER to get this ball rolling

tell the ER that you are coughing up blood and see what happens

yes it is very scary and depression will be very normal, so will not knowing what to do next and take someone with you,

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Saturday, February 28, 2009, 5:38 PM

Sorry for the confusion, yes it's Idaho not Oregon. My mind hasn't been very clear since they so abruptly gave me the diagnoses. He spent about 3 minutes with me when I first arrived asking about my symtoms, listened to my lungs and then sent me to others for a battery of tests. He didn't give me any of the results just that I had Idiopathic Interstitial Lung Disease/Pulm. Fibrosis and that I only had 40% lung capcity left then he walked out. I had to find this site just to try and understand what he was talking about. He ordered a CT and Sputum test but never discussed what my O2 stats were with movement. And told me to come back in 1 month. With the way this thing is progressing I am very uncomfortable with waiting that long. He didn't even address the coughing up blood point. I can understand from what I have read here, WebMD and other sites that this is supposed to be a slow progressive disease

but does that factor in a compromised immune system? I just want some answers now. The next month is going to last forever.> >> > rpickel (what is your name?)> > Wow, you have been through so much. I'm sorry for the plates you > have to juggle. One good thing tho' is you are in the right place for > support and info.> > In my case, it wasn't the lung function lost it was that the oxygen > level in my blood

was not enough...our levels should be above 90-91 > all the time. O2 level is measured with an oximeter and many of us > have our own. They can be purchased for $65 at> > www.portablenebs. com they are FDA approved and work well. It's > the yellow one. It just clamps on a finger...> > SOB (shortness of breath) is certainly a sign you may need 02. > > Are you seeing a pulmonologist?> > In what State do you live?> > Others will reply who have more knowledge than I do.> > But welcome, I'll watch for your posts...> > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums> > Don't fret about tomorrow, God is already there!> > > > ILD/Pulm. Fibrosis> > > > > > > > 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.> >>

March 1, 2009

jack

that is so nice of you

i wish i knew you 2 years ago

i would also like to visit your neighbor lol

sounds like a great birthday celebration

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09

www.transplantfund.org---

Subject: Re: Re: ILD/Pulm. FibrosisTo: Breathe-Support Date: Sunday, March 1, 2009, 11:08 AM

Sunny,

An oximeter is absolutely necessary for those of us with PF or any one of its many manifestations. It can save your life.

If you are unable to afford an oximeter, send me your full name, your street address and your personal email and I will have one sent to you as a gift. Please send this info to me at JMARSHALL6867@ roadrunner. com. Jack79/IPF - UIP/dx06/05 Maine

From: "sunnypickel@ ymail.com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, February 28, 2009 10:17:50 AMSubject: Re: ILD/Pulm. Fibrosis

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?> > From: rpickel1@... <rpickel1@.. .>> Subject: Re: ILD/Pulm. Fibrosis> To: Breathe-Support@ yahoogroups. com> Date: Saturday, February 28, 2009, 4:13 AM> > > > > > > > Hi Margaret,> > This site is so wonderful. I can't believe I have gotten so many nice replies so quickly. My name is Sunny and I used to live up to it but the last few years have slowed down my laugh track. My pulmdoc found the glass last year but didn't think it worth doing a biopsy since I did not have any symptoms and had 100% lung function. I will find out next

week if there are more of the nodules than before. I have seen the ground glass nodules mentioned on some med sites. I think maybe webmd but I had googled ILD and looked at a lot of sites. They did tell me I had COPD last year and put me on oxygen but I improved so much in 5 months he took me off it. My O2 at rest is about 98% but drops significantly when walking. I think he is just waiting for the CT and sputum reports before he starts any treatment. Since I am already on Prednisone and that seems to be the first line of treatment for ILD I think he's just being conservative then again he> only spent about 2 minutes with me and seemed confused and a little angry when I started crying after the diagnoses. When he said I had already lost 60% lung capacity I was freaked. My disease seems to be progressing much more rapidly then usual. I can deal

with the shortness of breath much easier than I can the chest pain and coughing. I am hoping he will do something about that when I see him next. I am also considering getting a second opinion since my doc doesn't seem to have time or compassion. Don't hesitate to write if you think I can help in any way.> > Sunny> > > > > From: Margaret McConnell > Sent: Friday, February 27, 2009 10:21 PM> To: Breathe-Support@ yahoogroups. com > Subject: Re: ILD/Pulm. Fibrosis> > > > > > Hi 'rpickel', do you have another name?> > You are the first that I have heard use the term 'ground glass' on this board, that was one of my first PH symptoms. I was diagnosed with pneumonitis in 97, PH in 06, COPD and PF most recently. I was at 43% lung capacity the first time

they gave me a PFT. They called my pulmonologist immediately and sent me home with oxygen 24/7 right then at 2lt. We say that we are all different but I would say from my experience that you need oxygen NOW, especially with all of your other physical problems. Our bodies need the oxygen to function and heal properly. I do not have GERD or any autoimmune disease but others on the board do and can tell you more about them.> > I am relatively new on the board but can tell you that there is alot of information to be found for your questions. I hope they give you oxygen on your next visit, I have a nifty liquid oxygen back pack. I was very active before also. I would also add not to rush or be in a hurry, allow extra time and go slow, breath in through your nose and out through pursed lips so that you don't end up gasping like a fish out of water...like I did...> >

Margaret> > > > > > From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Friday, February 27, 2009 8:05:21 PM> Subject: ILD/Pulm. Fibrosis> > > > > 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.>

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