Interstitial Lung Disease Community Group
Interstitial (in-tur-STISH-ul) lung disease actually describes a group of disorders, most of which cause progressive scarring of lung tissue. This eventually affects your ability to breathe and get enough oxygen into your bloodstream. Beyond this, the disorders vary greatly (mayoclinic.com).
I've noticed over the last week or two I have been coughing a lot more and seem to need a higher O2 setting to stop it, I am afraid this means I have had some progression......I see my pulmo in a couple of weeks and we will see what the pft's say. I have been stable for the last two years and this scares me!
I just wanted to get that out of my head ..... Maybe it's just the change in the weather? One can hope!
Thanks for listening
Beth
I just wanted to get that out of my head ..... Maybe it's just the change in the weather? One can hope!
Thanks for listening
Beth
I am on prednisone 5mg
Plaquenil 400mg
Citalopram 20mg
Pariet
Pariet, celebrex. As needed, and a bunch of vitamins and supplements
How are you feeling? Are you still coughing as much? I have a hard time this time of year, so I am praying yours is just the change of season right now. It doesn't make it any more comforting, when you are reminded that you are sick, though. I do fine mentally until I start getting the chest pain and coughing. Are any of your medications inhalers? I seem to differ from everyone with this -- I had a bronchoscopy in July, I have primarily B Cells, granulomas and enlarged lymphnodes in my lungs... however, I'm on 4 different inhalers - all various steroids - no oral medications. I have to say, other than exhastion right now, my lungs feel pretty decent. They can't figure out the immune disorder that is causing everything - so I'm heading to Mayo Clinic in January for some more answers -- I hope...
I really hope you feel better soon.
All the best,
Andee
I'm not on any inhalers, mine is a result of scarring so inhalers don't do anything for me. I did try a few in the beginning.
The coughing is much better...lol. I should know by now to check my equipment first before jumping to the worst case scenario.....I didn't turn the tank on enough and the flow as next to nothing so I was having to turn it up quite a bit more than normal......so its all good now!
I'm not sure of anything anymore.... that is why I'm heading to the Mayo Clininc in January to see some specialized immunologists. I will also see a pulmonary doctor, though I do really like my Pulmonary doctor in the ILD Clinic at NJH. He's about the only one on the ball. When I asked him about all of the treatments I have been reading about, it all comes down to my kidney disease. They are hesitant to throw me into any agressive treatments because if they blow out my kidney(s), I won't be able to get on a transplant list because of my mystery immune disorder. I've been on Prednisone - they put me on it when I get pneumonia. All of the inhalers are steroids, too. I go back to NJH on Dec 7th for more tests, and will see my ILD doctor the next day -- he is supposed to have it set for me to see the Lymphoma specialist at Stanford, as well.... that is probably the most critical... I've developed a ton more giant lymphnodes in my groin just over the last couple weeks. One of these days it will become cancer.... sometimes I think that is what they want, because they know how to treat that. :-(
I'm anxious to hear about your appointment with Dr. Routes! If I come up empty at Mayo, I may look into seeing him, as well.
Andee
Ok I have a paper on Granulomatous Disease if your interested?? I can email it to you. I've always thought they were seperate disease, but someone on the cvid board said they were the same, I will ask dr. routes but it IS interesting - so basically would get nodules in skin, organs, lungs, etc...
Gosh don't you feel like your appts are SO FREAKING FAR AWAY? haha hang in there girl!
Beth