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:
- Go into hiding from the world so you don't get contaminated and die
- Go on living life to the fullest not taking any precautions and get sick and die
- 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.