Days after I was on the organ transplant list I made a list of reasons for myself as to why I should be on the list. For some reason my life experience, lab test results and internal suffering was not enough. I had to see it on paper in order to try and justify it to myself.
I have been on oxygen 24/7 since the end of June 2010. So I keep at a level that is good enough for me just sitting or laying down. If I have to stand up or move or talk I have to adjust the level higher.
This was a list I created months ago:
Moving in bed, walking to the bathroom, brushing my teeth, bathing, talking and standing up. I kept telling myself, this is not normal Alma. It may be part of my world and others dependent on oxygen supplementation but it certainly is not normal. Nor are the coughing spells I go into. I can cough anywhere from 3 to 4 minutes to 20 to 25 minutes. These spells come from anything. Sometimes it is from exertion where I did not get enough oxygen, sometimes it could be the weather. Be it humidity, heat, cold or wind. It could be pollen, dust, perfume or scents. People with IPF (Interstitial Pulmonary Fibrosis) are hyper-sensitive to many smells.