In 2012 I was diagnosed with Idiopathic Pulmonary Fibrosis. The same disease that my dad passed away from. It’s ironic that I have a lung disease when I have never even tried a cigarette. Here is the definition of IPF...
Pulmonary fibrosis (literally "scarring of the lungs (https://en.m.wikipedia.org/wiki/Lungs
)") is a respiratory disease (https://en.m.wikipedia.org/wiki/Respiratory_disease
) in which scars are formed in the lung tissues, leading to serious breathing problems. Scar formation, the accumulation of excess fibrous connective tissue (https://en.m.wikipedia.org/wiki/Connective_tissue
) (the process called fibrosis (https://en.m.wikipedia.org/wiki/Fibrosis
)), leads to thickening of the walls, and causes reduced oxygen supply in the blood. As a consequence patients suffer from perpetual shortness of breath (https://en.m.wikipedia.org/wiki/Shortness_of_breath
There is no known cure for the scars and damage in the lung due to pulmonary fibrosis.[ (https://en.m.wikipedia.org/wiki/Pulmonary_fibrosis#cite_note-medicinenet-2
I have been on oxygen 24/7 since 2013. You learn to adapt being tethered to a breathing apparatus. Not many doctors know much about IPF. But I was fortunate to find Dr. DiBello who knows this disease. He practices right here in DeLand.
He is the first doctor to give me hope of survival. He suggested that we work towards a bi-lateral lung transplant. One of the criteria to be accepted as an organ recipient is to have a certain BMI. Mine is definitely too high. But as the doctor says, it’s almost impossible for me to lose weight due to my high doses of steroids that keep me alive. Also I cannot exercise due to my breathing.
I am now at the final stage of the disease. My time is running out. But I’m still hopeful.
But on top of my respiratory issues I was recently diagnosed with Spinal Stenosis.
Spinal stenosis is an abnormal narrowing (https://en.m.wikipedia.org/wiki/Stenosis
) of the spinal canal (https://en.m.wikipedia.org/wiki/Spinal_canal
) or neural foramen (https://en.m.wikipedia.org/wiki/Neural_foramen
) that results in pressure on the spinal cord (https://en.m.wikipedia.org/wiki/Spinal_cord
) or nerve roots (https://en.m.wikipedia.org/wiki/Nerve_roots
It is severe and progressing. The pain is unbearable. I cannot walk, sit, lay or stand without excruciating pain. I am confined to an electric scooter to move around. Surgery is the only option to help the pain but I cannot go under anesthesia due to my lungs. So at this time I am being referred to Shands Hospital in Gainesville.
So this is my long and crazy story. I try to stay positive and have faith that God will get me through this.