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Kitty-TN
Rookie

USA
1 Posts

Posted - Feb 24 2015 :  4:18:11 PM  Show Profile  Reply with Quote
Not thrilled to join this club, but happy to find the group!

My history is, I was diagnosed with Cryptogenic Organizing Pneumonitis, a rare interstitial lung disease, four years ago. It's designated as an "orphan" disease because it's so rare that no real research is being done even though it kills one out of three. I survived and am in remission, but it may have led to my current diagnosis of COPD/bronchiectasis, another rare one. It seems I only get the unique, boutique conditions - LOL lucky me! I'm 64 years old and have never smoked. I have a new pulmo (this one actually seems to like me, but that is another story).

I am an Alpha-1 carrier but did not know that until about a year or two ago, for whatever that is worth.

I may outlive this thing, or it may kick my butt. Either way, I vow to go down fighting. In the meantime, I will be here asking y'all questions, getting advice, asking for suggestions and for your help. Hope to possibly find some friends.

Kitty


Haven't thought of a jazzy signature line just yet

Daisy
Rookie

USA
23 Posts

Posted - Feb 24 2015 :  5:15:30 PM  Show Profile  Reply with Quote
Hi Kitty, I'm Daisy & am also pretty recent to this board. I have stage 2 COPD. Welcome. I'm sure you will find lots of great information here.
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GoodWitch
Member

70 Posts

Posted - Mar 02 2015 :  12:40:34 AM  Show Profile  Reply with Quote
Kitty, I'm Glenda, also relatively new and glad I found this forum. I've been labeled Stage 3 COPD but have my doubts about that. Most people resent the insinuation that some of their symptoms might be psychosomatic, but I would be thrilled if that would turn out to be the case for me. My father died from COPD seven years ago at the age of 88. I am 71 and starting two years ago began to show symptoms he didn't have until his mid-80s. I'm not doubting the COPD, just hoping the severity of it has been exaggerated by my anxiety, understandable, I think, given the fact that I was my father's sole caregiver and know of so many peripheral problems few people ever mention. Once in a while, though, somebody does, and it's such a relief to know that so much of this is common to a lot of us.
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jarca
Member

USA
25 Posts

Posted - May 23 2015 :  06:36:09 AM  Show Profile  Reply with Quote
Hi kitty,
I have copd and an interstitial lung disease--copd is "obstructive" disease & ILD is a "restrictive" disease. which confused me in the symptoms.
I found a support group for ILD and it has really helped me understand the differences and why I didn't "fit" in any one support group. It is a very active group. I'm not sure if your rare disease is covered specifically; but it sure has helped me understand the opposite symptoms of restrictive & obstructive---I go to both and i can usually find answers that before i though i was just "odd".
COPD has 2 diseases; ILD has over 200!
I hope it helps you find information as it has me;
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jarca
Member

USA
25 Posts

Posted - May 23 2015 :  06:40:31 AM  Show Profile  Reply with Quote

oops, i guess it helps if i put the link to it ;
https://www.inspire.com/find-group/?query=ILD&submit.x=28&submit.y=21
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