my original docs email today.

[Guest guest]

have been away for your last couple of clinic visits, so I have asked Dr. to update me on things. The lung biopsy results were something of a surprise, and they may indeed lead to a few changes in our thinking about your illness and what we do in our attempts to take the best possible care of you. These new findings do not mean that everything from before was done wrong, and in fact all that you have gone through up to now has been very helpful in understanding how severe your illness is and its clinical course. The pulmonary pathologist who interpreted your biopsy is a nationally known authority in this highly specialized area within his field. I have used him for the "final word" on difficult cases for nearly 20 years. Thus, I think we can rely on the accuracy of his reading. Unfortunately, even with his expertise there remain a number of important

unknowns, and this new information may or may not lead to important changes in your management. In any case, this slightly different interpretation of the pathologic basis for your interstitial lung disease raises some new possibilities for investigating its ultimate cause and also for treatment. I agree with Dr. that a formal, professional evaluation of your home environment by an industrial hygienist would be a good idea. Hopefully I will be able to staff your next visit with Dr. , so that we can all discuss the various aspects of your case and its treatment together. Joy: Any thoughts? www.thehandcraftedjewelrymall.com/joykiefner/

[Guest guest]

Joy,

That's a pretty teriffic email from your doctor. He seems pretty responsive to your concerns. I'm impressed!

From what I know about Hypersensitivity Pneumonitis (and I am by no means any kind of expert) finding out what you're allergic to is key. Therefore having your environment evaluated by a professional is an excellent place to start.

Years ago when my son was small we had purchased him a new mattress and boxspring. Starting about 3 days after it was delivered he became ill with a series of sinus infections, tonsillitis, bronchitis etc etc. THis went on for over 3 months. We had a close friend who was a "clinical ecologist" who came in and measured levels of chemicals in the air. He found levels of formadehyde gas in my sons room that were off the charts. His new mattress was "off gassing" huge amounts of formaldehyde. We got rid of it immediately and he recovered within a week. Now I'm not equating your situation with my experience, my only point is that sometimes we can be sensitive or allergic to things we would never expect. But once you find out what the issue is, you can do what you must to avoid it and preserve the lung function that you have.

I know you don't want to take prednisone but from what I've read the inflammation of HP is very treatable with prednisone. Discuss all this with your doctor and think hard about what you want to do.

I'll add my voice asking you to stick with us here. HP is a form of pulmonary fibrosis, just like my NSIP is a form of fibrosis. Yours is probably the single most treatable form. I'm actually happy for you!

We're all here when you need us!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

my original docs email today.

have been away for your last couple of clinic visits, so I have asked Dr. to update me on things. The lung biopsy results were something of a surprise, and they may indeed lead to a few changes in our thinking about your illness and what we do in our attempts to take the best possible care of you. These new findings do not mean that everything from before was done wrong, and in fact all that you have gone through up to now has been very helpful in understanding how severe your illness is and its clinical course.

The pulmonary pathologist who interpreted your biopsy is a nationally known authority in this highly specialized area within his field. I have used him for the "final word" on difficult cases for nearly 20 years. Thus, I think we can rely on the accuracy of his reading. Unfortunately, even with his expertise there remain a number of important unknowns, and this new information may or may not lead to important changes in your management.

In any case, this slightly different interpretation of the pathologic basis for your interstitial lung disease raises some new possibilities for investigating its ultimate cause and also for treatment. I agree with Dr. that a formal, professional evaluation of your home environment by an industrial hygienist would be a good idea. Hopefully I will be able to staff your next visit with Dr. , so that we can all discuss the various aspects of your case and its treatment together.

Joy: Any thoughts?

www.thehandcraftedj ewelrymall. com/joykiefner/

[Guest guest]

Joy,

That's a pretty teriffic email from your doctor. He seems pretty responsive to your concerns. I'm impressed!

From what I know about Hypersensitivity Pneumonitis (and I am by no means any kind of expert) finding out what you're allergic to is key. Therefore having your environment evaluated by a professional is an excellent place to start.

Years ago when my son was small we had purchased him a new mattress and boxspring. Starting about 3 days after it was delivered he became ill with a series of sinus infections, tonsillitis, bronchitis etc etc. THis went on for over 3 months. We had a close friend who was a "clinical ecologist" who came in and measured levels of chemicals in the air. He found levels of formadehyde gas in my sons room that were off the charts. His new mattress was "off gassing" huge amounts of formaldehyde. We got rid of it immediately and he recovered within a week. Now I'm not equating your situation with my experience, my only point is that sometimes we can be sensitive or allergic to things we would never expect. But once you find out what the issue is, you can do what you must to avoid it and preserve the lung function that you have.

I know you don't want to take prednisone but from what I've read the inflammation of HP is very treatable with prednisone. Discuss all this with your doctor and think hard about what you want to do.

I'll add my voice asking you to stick with us here. HP is a form of pulmonary fibrosis, just like my NSIP is a form of fibrosis. Yours is probably the single most treatable form. I'm actually happy for you!

We're all here when you need us!

Beth in NY Fibrotic NSIP 06/06

"At the evening of life we shall be judged on our love."

St of the Cross

my original docs email today.

have been away for your last couple of clinic visits, so I have asked Dr. to update me on things. The lung biopsy results were something of a surprise, and they may indeed lead to a few changes in our thinking about your illness and what we do in our attempts to take the best possible care of you. These new findings do not mean that everything from before was done wrong, and in fact all that you have gone through up to now has been very helpful in understanding how severe your illness is and its clinical course.

The pulmonary pathologist who interpreted your biopsy is a nationally known authority in this highly specialized area within his field. I have used him for the "final word" on difficult cases for nearly 20 years. Thus, I think we can rely on the accuracy of his reading. Unfortunately, even with his expertise there remain a number of important unknowns, and this new information may or may not lead to important changes in your management.

In any case, this slightly different interpretation of the pathologic basis for your interstitial lung disease raises some new possibilities for investigating its ultimate cause and also for treatment. I agree with Dr. that a formal, professional evaluation of your home environment by an industrial hygienist would be a good idea. Hopefully I will be able to staff your next visit with Dr. , so that we can all discuss the various aspects of your case and its treatment together.

Joy: Any thoughts?

www.thehandcraftedj ewelrymall. com/joykiefner/

[Guest guest]

I understand your anger at having been misdx'ed, dealing with impending mortality & putting your family thru that, as well. However, the new dx is encouraging tho it will still be challenging. One woman I met was allergic to all petroleum products which are widely used in making products we have in our home. They had to take up all their carpet & take everything out of their home that was made with petroleum. While this is a major hassel & they were living on exposed subflooring throughout their home, and their were lots of products they could not use, SHE WAS WELL! It all seems overwhelming at times & it takes time to adjust and find your core of motivation, but keep working on it. Peace be with you. bonnie/SC/IPF

Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

[Guest guest]

Hi Bonnie, I am glad for the woman you met, but I will never be well. I have too much damage, and my allergies are so encompassing, that we can't find out which one or all that keep me ill.On top of the HP, the COPD is just a deadly, it just takes longer to end my life. Some of us have just as hard a time of breathing as ithe IPFers, we will also at some time be put on O2. So I'm sorry if I can't be as upbeat as you think I should be. Instead of the 2-4 yr dx, the dr. has given me maybe 10yr dx. I have moved into a new apt, gotten rid of all pets and have done everything that anyone thought might help. IT HASN'T.I am still sick and tired of being sick and tired.I still can't breath and I still can't eat. So you tell me how you think I can get WELL. Bonnie Faulkner wrote: I understand your anger at having been misdx'ed, dealing with impending mortality & putting your family thru that, as well. However, the new dx is encouraging tho it will still be challenging. One woman I met was allergic to all petroleum products which are widely used in making products we have in our home. They had to take up all their carpet & take everything out of their home that was made with petroleum. While this is a major hassel & they were living on exposed subflooring throughout their home, and their were lots of products they could not use, SHE WAS WELL! It all seems overwhelming at times & it takes

time to adjust and find your core of motivation, but keep working on it. Peace be with you. bonnie/SC/IPF Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.

[Guest guest]

Hi Bonnie, I am glad for the woman you met, but I will never be well. I have too much damage, and my allergies are so encompassing, that we can't find out which one or all that keep me ill.On top of the HP, the COPD is just a deadly, it just takes longer to end my life. Some of us have just as hard a time of breathing as ithe IPFers, we will also at some time be put on O2. So I'm sorry if I can't be as upbeat as you think I should be. Instead of the 2-4 yr dx, the dr. has given me maybe 10yr dx. I have moved into a new apt, gotten rid of all pets and have done everything that anyone thought might help. IT HASN'T.I am still sick and tired of being sick and tired.I still can't breath and I still can't eat. So you tell me how you think I can get WELL. Bonnie Faulkner wrote: I understand your anger at having been misdx'ed, dealing with impending mortality & putting your family thru that, as well. However, the new dx is encouraging tho it will still be challenging. One woman I met was allergic to all petroleum products which are widely used in making products we have in our home. They had to take up all their carpet & take everything out of their home that was made with petroleum. While this is a major hassel & they were living on exposed subflooring throughout their home, and their were lots of products they could not use, SHE WAS WELL! It all seems overwhelming at times & it takes

time to adjust and find your core of motivation, but keep working on it. Peace be with you. bonnie/SC/IPF Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.