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  • Extrinsic allergic alveolitis / hypersensitivity pneumonitis

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    Old 07-18-2003, 06:07 PM   #1
    mom2katie
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    Question Extrinsic allergic alveolitis / hypersensitivity pneumonitis

    I just received the results from the pathology report of my VATS biopsy. The surgeon read the results to me, and it said that the biopsy was *most consistent with extrinsic allergic alveolitis (hypersensitivity pneumonitis)*

    I did a little searching on the web, and found that this is a category of diseases that are caused by inhaling organic dust. There are various types of organic dust that can cause it, and each type of organic dust brings rise to a different name for the disease it causes. (For example, Bird Fancier's Lung is caused by intense, prolonged exposure to birds and bird droppings.)

    I can't think of a single thing I could have been exposed to that could cause this disease in me. I'm 28 years old, and I've never worked in agriculture, kept birds, worked with air conditioning systems, or any of the other high-risk occupations. I grew up in the Sacramento valley, but I grew up in town, not in the country. I am just at a total loss as to what I could possibly be allergic to?

    Is it possible that the biopsy result was wrong - that there is something else that looks similar to EAA/HSP in a biopsy but is NOT caused by an allergen? Or are there other allergens I am not likely to be aware of? I feel SO confused!

     
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    Old 07-21-2003, 07:58 AM   #2
    caregiver
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    The best advice I can give you is have a sit down long talk with your pulmonolagist (sp?) and have him or her explain it better. If you don't have a pulm doc, research for the best hospital in your area and get one. You could always ask for the biopsy report and take it to another doc for a second opinion as well. This is YOUR health and you need to be comfortable with your doc and you should also have a voice in the course of treatment decided upon. You didn't mention it in your post, how are they planning to treat this and what is the extended outlook?

     
    Old 07-21-2003, 01:59 PM   #3
    mom2katie
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    I have an appointment with the pulmonologist on Wednesday. However, if he tells me he believes that this is really an allergic reaction to something, I'm going to be looking for a second opinion. It just doesn't seem possible to me. Hopefully, though, I'll know more on Wednesday.

     
    Old 07-23-2003, 03:11 PM   #4
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    How did your appt with your pulm doc go?

     
    Old 07-24-2003, 12:57 AM   #5
    mom2katie
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    Well, I got a real suprize, because it turns out that I DO have EAA/HSP! All of the pathologists in the office examined my tissue samples and agreed on the diagnosis, and they're very sure of it.

    They think the culprit is our dog, unfortunately. We got her around the time the symptoms started, and she just seems like the most likely reason for the problems I'm having. Which is good and bad news. The good news is, it is an easy thing to fix - no more dog, no more problem. The bad news is - no more dog!

    I'm also seriously considering replacing our dusty, icky carpets with laminate flooring throughout our house. Since dust is another possible problem, I'd just rather get rid of the carpets and not have that to worry about as much any more. Plus, I have *regular* allergies to dust that are a problem, and it would be nice to not have to deal with those any longer, too. So, hopefully by getting rid of the carpet and the dog, I'll be breathing a little easier soon!

    The plan is to find a new home for our dog and clean the house from top to bottom in the next couple of weeks, and then to start Prednisone. Hopefully, I'll only be on a high dose for a week or two, and then will be weaned off of it over the course of a few more weeks. If that takes care of the problem and the symptoms don't return, we'll know that the dog was the culprit. If it doesn't, we'll know we have to keep looking for the cause of the allergic reaction. But right now, the doctor thinks the dog is a fairly likely source of the problem.

     
    Old 07-24-2003, 07:13 AM   #6
    caregiver
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    I know this sounds like bad news now, my dog is part of my family and I would be upset at the thought of losing her. The absolutly GREAT news is this is relativly easy to treat. I am SO happy for you and your family. I wasn't going to say anything until you had the diagnosis from the biopsy but the news was not as good when my husband had the surgery. He was diagnosed with Idiopathic Pulmonary Fibrosis or IPF. He battled long hard but lost ultimatly lost the battle March 29th of this year. I know I don't know you but I really am almost crying in relief for you and your family. You will be able to watch your daughter grow up and have many wonderful years ahead of you. I'm sure you will be able to find a good home for your puppy and you may even be able to arrange "visitations".

    Take good care of yourself and keep us posted on your progress.

     
    Old 07-25-2003, 02:15 PM   #7
    mom2katie
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    Wow, I'm so sorry for your loss! That is terrible! I'm so thankful that this is something easy to treat. I was pretty worried that I'd have something more along the lines of what your husband had, and I'm SO happy that it didn't turn out that way. But I wish that your news could have been as good. Thank you so much for your support through all of this.

     
    Old 07-29-2003, 09:05 PM   #8
    ericbrown
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    Caregiver, I too am sorry to here about your loss. I was reading this forum because of recent "air hunger" experiences that have been flaring up personally for the last few months. Today just happened to be a REALLY bad day for me. Your post jumped out at me because my birthday is March 29th. You have my prayers!

    Respectfully,

    Eric D. Brown
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    Eric D. Brown

     
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