Sunday, February 20, 2011

Granulomatous Lymphocytic Interstitial Lung Disease (GLILD)

Description courtesy of National Jewish Hospital 

Interstitial lung disease (ILD) is a broad category of lung diseases that includes more than 130 disorders characterized by scarring (i.e. "fibrosis") and / or inflammation of the lungs. ILD accounts for 15 percent of the cases seen by pulmonologists (lung specialists).
In ILD, the tissue in the lungs becomes inflamed and / or scarred. The interstitium of the lung includes the area in and around the small blood vessels and alveoli (air sacs) where the exchange of oxygen and carbon dioxide takes place. Inflammation and scarring of the interstitium disrupts this tissue and leads to a decrease in the ability of the lungs to extract oxygen from the air. 
The progression of ILD varies from disease to disease and from person to person. It is important to determine the specific form of ILD in patients because what happens over time and the treatment may differ depending on the cause. Importantly, each person responds differently to treatment, so close monitoring during treatment is important.

I have a form of ILD called GLILD.  I was told this is a particularly rare form caused by my immune disease - Common Variable Immunodeficiency.  It can kill me.  Crazy huh? Say it again but say it as if it's you:  It can kill me.  Let me expand.  If I get sick - flu, sinus infection, anything - and it goes to my lungs, it can be life threatening.  ISN'T THAT INSANE?  Ok ok ok.  I wanted this to be informative and not all about me lol
Precautions must be taken into consideration with this form of ILD.  You can do one of several things:
  1. Go into hiding from the world so you don't get contaminated and die
  2. Go on living life to the fullest not taking any precautions and get sick and die
  3. Find an equal middle - this mid point will be different for everyone.  
Some precautions can be:  
  • Wiping down carts with antibacterial wipes ( I carry travel size in my purse at all times)
  • Wearing masks in the wind
  • Carrying your own pen around to sign things ( I must sign my child in/out of daycare daily)
  • Hand washing
  • Hand sanitizer
  • Educating your family
  • Avoiding sick people or taking precautions when immediate family members are ill
  • Avoiding crowds - bars, concerts, children's classrooms
This is not by any means an exhaustive list.  I even have suggestions for work environments but am hesitant to post until I live my own situation.


Treatments can vary.  It is important to know that it appears that doing nothing, is the wrong way to go.  This is progressive.  I first became ill in June and was initially diagnosed with Valley Fever.  A biopsy was done and NO Valley Fever spores were found but they kept treating me.  At some point the infectious disease expert told the pulmonologist he did not feel it was VF.  He told us this twice yet the pulmonologist kept treating me for it.  Fast forward.  When I went to National Jewish Hospital they told me that the CT Scans from June 2010, October 2010 and January of 2011 all progressively got worse.  Fabulous right?  Doing NOTHING is the wrong thing to do.  The damage with MY type of ILD is irreversible.  Medications can vary.  Popular among doctors are high doses of steroids.  This drug covers a wide range of illnesses and doesn't need to attack and kill anything particular.  There are some new treatments out there that are also being used such as Rituxan (if you have B Cells causing the chaos in your lungs) and Imuran (for T Cells).  Steroids are KNOWN for being bad bad news.  They cause wild mood swings, significant weight gain, sleeplessness.  This is the treatment approach they are taking for me.  Bummer I know.  I am armed with an arsenal of questions for my family doctor and a long list of additional medications such as Foxomax for osteoporosis, Calcium with Vitamin D for bone loss, multivitamin, Xanax to help me sleep and possibly something stronger as it isn't working so well, Ativan is on standby in case I lose my marbles and go into a rage about something.  Scary huh? Um yeah.  

I think I will be chronicling my experience with the medications and tips and tricks I have for steroid use.  I've already tried to buy food that is lower in sodium.  Man that stuff is in EVERYTHING.  Ridiculous.  I'm starting to exercise everyday.  Weight gain will be my enemy.  Moon face is probably unavoidable but I will be asking doc about Lasix as well.

I also started a support group for people with ILD.  I couldn't find one.  I think its important.  Very important as most people have no idea what it is like to walk around every day wondering if that sneeze you just walked through is the one that will kill you.  You can find the support group here at:  http://www.dailystrength.org/groups/interstitial-lung-disease

Goodbye for now.  

Much love,

SpecialK

11 comments:

  1. Kelli~This is a wonderful discription of your illness and how you are approaching it...you write so well....start that book, ok??? I am so proud of you starting a support group, I did not know this! Your amazing, girl! As you know...I myself had to take LARGE quantities of steroids, too! :o( YES....not fun, yet it is amazing how it can turn things around for you and STOP the progression of disease. It was amazing how it helped me with the RSD~~~I was hearing how the worst case scenerio...I would not be able to use my left arm anymore...all muscle would desolve...so, I had to go with what they told me...saw several doc's and had the same opinion....so with physical therapy and steriod treatment...I had positive results! :o) What I wanted to tell you that I think being on the Lasix is so helpful...I am still on this as I take 5 mg of Prednisone still. It really helps you lose the water weight. I think with the right exercise and watching your sodium intake you will find you will be ok....yes, u may develop a little "round" face. It talks away ALL wrinkles!!! LOL~~~~I was fortunate as I did not have the mood swings...but, taking meds will help you with this. Stay positive and keep the faith that with being pro-active with all of this stuff you are doing...you may be surprized at how this helps with your illness! OK....now will you start writing your story...from a child to date!!! I mean it girlie...you have a story to tell and a gift to write...USE IT! :o) This is such a rare thing...it would be helpful to many~~~~I sure love ya girlfriend! Soon, we will start our bakery/coffee shop, ok? God Bless~Tory xo

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  2. Oh girlfriend thank you so much! I hope hope hope it was informative and accurate. I wasn't able to find anything on the internet and had to wait 4 months to know anything yikes, not cool. Thank you my friend for sharing your positive experiences with the steroids. Love you xoxo ps - a book? Girl you crazy hehe

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  3. Thinking of you. Its awesome that you are so proactive about your condition and that you also do your own research.

    Still praying for you girl!!!

    Hugs

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  4. The AlgaeCal Bone Health Program is a natural <a href="http://www.algaecal.com/osteoporosis-treatment.html>osteoporosis treatment</a> that combines all of the above advice.This natural osteoporosis treatment consists of AlgaeCal Plus, Strontium Boost and weight bearing exercise.

    AlgaeCal Plus is the world's only plant source calcium and It also includes magnesium, trace minerals, vitamin D3 and vitamin k2. Strontium Boost is a supplement consisting of strontium citrate, learn more about strontium, a powerful bone building mineral.

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  5. Thank you for the information Jack. It sounds very beneficial.

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  6. Hi I am janna Allon
    I also glild I had a different diagnosis, but it beat all not so new trials and tog glild pretniezon I had but it was really scream had been suffering from depression I now get endoxdan it worked first time but now it not have had a scan last week in January and hear the game got really curious now I understand very well what you are going through and would like to wish Contakt perhaps through mail my mail veins is j.allon @ live.nl you therefore CVID because the doctors said that first you need to have CVID glild you can get
    I myself have CVID glild alps itp glild but I have so far managed to live with good aarig hopefully will email again

    Greetings janna

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  7. Hi Janna,

    I emailed you, hopefully you got it??

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  8. I totally agree with Jake.
    AgaeCal is a very good natural osteoporosis treatment.

    I also suggest to check out the Save our bones program.

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  9. I would love to chat if you ever get the chance! I was just diagnosed with GLILD. You responded the Facebook post I made in December about going ahead with the open lung biopsy or not.
    I would love to hear about your experiences at National Jewish as well.

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  10. Hi all... I have been battling ITP,CVID, GLILD, And several others this seems tto be a snowball disease. Treatment for me is failing... my lungs worsen, my energy levels drag and constantly getting phenmonia broncitis and a host of others. Would love to compare treatments to see if maybe there is a better way to attack this. Thanks so much ben27wen22@gmail.com

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  11. Hi Everyone,

    My name is Lauren and I was just diagnosed with GLILD after beginning to have shortness of breath in Nov 2013. I am 26 years old. Worked out 4 times a week before, best shape of my life, never sick, etc and then out of the blue, I started to get a wheeze. I have been through hell and back in the past year but have finally received a diagnosis. I did go through with the VATS (video assisted thoracic lung surgery) in May to have a definitive diagnosis as a bronchcoscopy was not helpful. Just started IV treatment mid July and am doing that for three months until I am able to look at treating my lungs. I feel like nothing is known about GLILD...there is little to no information out there unfortunately.

    I am considering going to the US (I live in Canada) to the Mayo clininc- has anyone ever given that a thought- they do have stem cell transplants to replace immune systems..

    Thanks for listening :)

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