My mom is chronically ill.

She has a disease called Idiopathic Pulmonary Fibrosis (IPF).

As the Coalition or Pulmonary Fibrosis (CPF) defines it, “Idiopathic pulmonary fibrosis (IPF) is a progressive and generally fatal disease characterized by scarring of the lungs that thickens the lining of the lungs, causing an irreversible loss of the tissue’s ability to transport oxygen. IPF ultimately robs a patient of the ability to breathe.”

Statistically, “IPF affects about 128,100 people in the United States, with about 48,000 new cases diagnosed annually. (1) 40,000 people die each year to IPF, the same as to breast cancer.”

“IPF is five times more common than cystic fibrosis and Lou Gehrig’s Disease (or ALS), yet the disease remains virtually unknown (to general public and even among some physicians) and IPF receives a fraction of the research funding (IPF: approx. $18 million per year; Cystic Fibrosis and ALS: $85 million and $48 million per year respectively. There is no known cause, no FDA approved treatments and no cure for IPF. IPF is one of the few remaining diseases in which this is the case.”

My mom is on Oxygen 24/7, and whenever she leaves the house she has portable oxygen tanks with her all the time. Fortunately, she is able to work at home and telecommute, and doesn’t need to have disability insurance at this time. Whenever we go out, people always stare at her, for having tubes in her nose. It’s fucking pathetic, these people, glaring at my mom like she is some monster or weirdo. It’s sick of them, it’s horrible. She is currently on 2 lung transplant lists, one at the University of Minnesota and the other being at Loyola University Chicago. These are two of the best programs for lung transplants, and I’m optimistic she will get a transplant soon, but as the CPF says, “About two-thirds of IPF patients pass away within five years.”

She was diagnosed last summer, around July or August, I can’t specifically remember. It progressively gets worse, and she coughs a lot, sometimes for minutes at a time. Mundane tasks wear her down easily, and she has barely any stamina. My grandma, her mother, died from Pulmonary Fibrosis when she was in her mid-40’s. I never got to meet her unfortunately.

I am optimistic and I hope that my mom will get a fresh set of lungs and be able to continue to live life, but I have come to realize that perhaps that might not happen. Things happen, life goes on. I can’t say that I’ll pray, because I’m not quite religious, to be completely honest with you, but I can say that I will hope for the best, and continue to be there with my mom.