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).

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  • twoster

    New here

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    I'm hoping there are active people here. I live in Sun City Az and have just been diagnosed with ILD, no fibroids.  That's really all I know. I'm on oxygen, 2 liters 24 hrs per day. I started having shortness of breath some years ago, but thought it was heart issue. I have CHF, congestive heart failure. It finally got really bad so I went through a bunch of cardiac tests and it showed no change...
  • Perri

    Is this group still active?

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    Hi,I am a new patient of Dr Routes. I live in Ohio and had the pleasure of seeing him last week for an evaluation and diagnosis GLILD. I was diagnosed with CVID IN 2012 and have been infusing immunoglobulin since September of 2012 subQ weekly with Hizentra. I started my downhill journey in health so many years ago but had my first big platelet crash was in 2010. That was the beginning of the end...
  • lheisey

    CAN ANYONE HELP ME

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    Hello.  My sister has been diagnosed with ILD.I am seeking help for me so that I can help her.on here I saw someone ask what type of ILD does anyone have.  I didn't know there were mutiple types.If anyone can talk with me let me know when you are online.
  • wooz4

    Glild

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    so what does everybody do once they are done with the rituxan and Imuran/cellcept treatment protocol ??
  • Group Founderkelli1b

    Conference notes - dealing with lung disease

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    Ok, SUCH AN AWESOME SEMINAR TODAY! Dr. John Routes (pronounced root-ez). So lets start here:All things that wheeze are not asthma! People are getting mis-diagnosed with asthma all the time! To find out for sure get a methocolaine test (sp?).For sinus issues you must have good nasal hygiene! Do steroid nasal spray and sinus washes DAILY. Do not use: augmentin, cipro, etc. In CVID,...
  • deleted_user

    Newly diagnosed GLILD looking for your advice/stor

    Hi All!I am a 26 yr old female from Canada. In the past year my health has spiraled out of control. From working out 5 days a week to now feeling like CRAP every day.Started with shortness of breathe last Nov, leading to a bronch, then an open biopsy to diagnose GLILD. My CVID was also diagnosed in May...never ever had any issues with sickness in the past but something hit me hard last fall that...
  • Group Founderkelli1b

    New Treatment For GLILD research!

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    Well its not new to me but its the first time I've seen this paper by my doc :) you remember? The one who wouldn't treat me:http://www.news-medical.net/news/20120901/Researchers-define-new-treatment-for-potentially-fatal-lung-disease-in-patients-with-CVID.aspx
  • Group Founderkelli1b

    Welcome!

    Hi, my name is Kelli and I have GLILD - Granulomatous Lymphocytic Interstitial Lung disease. I couldn't find a designated support group for ILD so I just started one! Please feel free to join and lets get some discussions rolling :)
  • Group Founderkelli1b

    Helloooo is anyone out there?

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    I haven't posted on here in awhile but have been thinking about you all and wondering how you are doing? Me, I seem to still be stable which is all I can hope for right? I must admit, I got really scared yesterday. During my shower, I lost a lot of hair. By itself not so scary, but on the back of me working and coming home and laying on the couch until bed totally exhausted every day for...
  • tinaunger50

    update on dr visit

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    I hope this finds you well. I went back to pulm Dr yesterday and the ILDs (I guess more than one) he says is called " farmers lung" and alveoli inflammation"...something to do with pneumonitis? anyway it dident help much for looking it up. he says theres over 100 different ILDs. the inflammation is comming down and Im feeling better in my lungs.but still have chest pain. he did take me down to 30...
  • tinaunger50

    new to the site and nobody here?

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    I really wish there was a support group here. I was recently diagnosed and trying to educate on whats going on with me. I also have R.a. Ive read posts that were here, not alot of people need the support I suppose, well they did say its rare diseases..I guess they may be right. I will check in again. for who sees this, I wish you pain free Beautifull days. Tina
  • Group Founderkelli1b

    Merry Christmas

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    You all are a very special part of my "sickie" family. I wish you all the best and a really wonderful, loving, peaceful Christmas and a HEALTHY New Year!
  • Group Founderkelli1b

    Off to Childrens Hospital of Wisconsin

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    In mid January I go see Dr. Routes...boy wish me luck...last ditch effort to...save my life I guess LOL
  • brunob

    Coughing more

    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?...
  • Group Founderkelli1b

    Anyone want to share? Diagnosis, treatment, outcom

    I was thinking we should maybe try to get one post going here. Would anyone like to share which ILD they have, the process they went through to get diagnoses and symptoms they were having, the treatment they are/were on and their outcome? I think it might be helpful to all of us as well as new people :)