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).
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 so to speak. I just kept getting sick with "Bronchitis" and eventually pneumococcal pneumonia hit me and set the doctors out on trying to find some answers. I hand an open lung biopsy in 2013. Healing from that was worse than labor!!!
I don't know anyone else with my disease. I don't like to talk about it and I don't really complain to people about how much like death warmed over I feel a lot of the time.
Not sure if this forum would be useful or not.
I see someone has been through the rituxan chemo treatment, I will be doing that soon here. Just wondering how your doing now?
We have stated juicing everyday. Different types of juices to help heal the body. We will find out in a few weeks of that has been working when she re takes her labs.
It's good to know there is a site where we can share our experiences. Hope to hear from more people.