Originally Posted by
Aylasnan
Quick update for all my new friends here.. been told it's COPD. On steroids and antibiotics and will be CT scanned again in a months time. Sorry I've not updated before but a bunch of family problems (unrelated) have all hit at the same time .. Thanks everyone for your concern really means a lot. Don't know what stage etc yet still in shock
I'm there with ya! I have COPD as part of the Wegeners package!
I had to be Dx'd with COPD and then Dx'd with pneumonia and with in a couple months lost 2 lobes of the right lung due to a growth attached to a blood vessel! It was found not be cancerous as I have a history of cancer!
It was 3 or so months after that, I flared and the Wegeners was revealed to the Drs who were trying to decipher my complaints over the previous 4 years!
What it boils down to is that I have WEGS and COPD from the wegs, kidney involvement, obviously the lungs, and the left heart ventricle pumps too soft I guess???!
The COPD is in the severe stage!
Last Thursday, I had an appointment with my RA and I get a message on my phone saying that I am to cut back to one Cellcept a day because my liver numbers were elevated!
I'm Ok with all of this but its frustrating with the wegs and you never know what will pop up next!
As far as your stage goes, just take care of yourself, do what the Dr says, do pulmonary rehab no matter what stage! Its all good info.
You are in for a life changing experience, you need to take care and listen to your body more than ever!
As for me, I'm on 02, 24/7 , 2 liters and was advised by Pulmo that I should go to 3 liters with activity. Also, no more work or exertion! Walk if I want to exercise, but no more work!
It sucks that its not curable but is tolerable if you accept and work around it!
Have a good day!
Nobody knows how we got to the top of the hill. But since were on the way down, we might as well enjoy the ride!
James Taylor, Secret Of Life
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